Untitled - Fundação D. Pedro IV

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Índice
I.
Sessões Solenes
A.
Sessão de abertura
Professor Doutor António Sousa Guerreiro………………………………………………………………… 1
Presidente do Conselho Científico da Faculdade de Ciências Médicas
Universidade Nova de Lisboa
Eng. Vasco do Canto Moniz…………………………………………………………………………………. 3
Presidente do Conselho de Administração da Fundação D. Pedro IV
Professor Doutor António Manuel Bensabat Rendas……………………………………………………. 5
Magnífico Reitor da Universidade Nova de Lisboa
Dra. Ana Jorge ………………………………………………………………………………………………… 7
Sua Excelência a Ministra da Saúde
B.
Sessão de encerramento
Professor Doutor António Sousa Guerreiro…………...…………………………………………………... 9
Presidente do Conselho Científico da Faculdade de Ciências Médicas
Universidade Nova de Lisboa
II.
Notas biográficos, Resumos e Comunicações
Prof. Doutora Ana Alexandra Fernandes ………………………………………………………………... 11
Moderadora “Abordagem Socio-Biológica ao Envelhecimento”
Prof. Doutor Tony Warnes ….……………………………………………………………………………...… 13
The medical and care challenges of a growing older population.
Prof. Doutora Constança Paúl ..……………………………………………………………………………. 25
Envelhecimento Activo.
Prof. Doutor Philippe Pitaud …..………………………………………………………………………….…. 29
Responding to dependency in old age.
Prof. Doutora Amália Botelho ..…………………………………………………………………………….. 33
Moderadora “Abordagem Bio-Neurológica ao Envelhecimento”
Prof. Doutor Alexandre Castro Caldas --…………………………………………………………………. 35
Geriatria e envelhecimento saudável.
Prof. Doutora Dawn Brooker ...……………………………………………………………………………… 39
The enriched opportunities programme for people with dementia in extra care housing.
Prof. Doutor Manuel Gonçalves Pereira .………………………………………………………………… 57
A depressão nos mais velhos: Aspectos relativos à família.
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I. Sessões Solenes
A. Sessão de abertura
Prof. Doutor António Sousa Guerreiro
Presidente do Conselho Científico da Faculdade de Ciências Médicas, da Universidade Nova de Lisboa
Muito bom dia a todos. Eu queria começar por lhes dar as boas-vindas, mas, antes disso, cumprimentar a
Senhora Ministra da Saúde e dizer-lhe que é com enorme prazer que a Faculdade de Ciências Médicas, uma vez
mais, a recebe.
Por outro lado também, não queria deixar de lhe apresentar não só os cumprimentos institucionais, mas,
também os cumprimentos pessoais a quem ao longo da vida muitas vezes tenho privado e começámos a privar
na altura dos bancos da Faculdade de Medicina, quando fomos colegas de curso.
- Magnífico Reitor da Universidade Nova de Lisboa, Sr. Prof. Doutor António Rendas, também uma vez mais
nos honra com a sua vinda à Faculdade de Ciências Médicas e, quero dizer-lhe, também, que tive a oportunidade de além de o cumprimentar do ponto de vista institucional, do ponto de vida pessoal também, já que nos
liga, como sabe, uma grande amizade. E, quer do ponto de vista profissional, quer do ponto de vista pessoal, o Sr.
Prof. Doutor António Rendas tem sido uma referência para mim. Desta maneira apresento, os meus mais respeitosos cumprimentos.
- Sr. Eng. Vasco do Canto Moniz, Presidente do Conselho de Administração da Fundação D. Pedro IV, os
meus mais respeitosos cumprimentos e creio que é também com muita satisfação que o recebemos nesta casa.
Quero-vos dizer que na qualidade de Subdirector da Faculdade de Ciências Médicas e Presidente do
Conselho Científico, esta parceria entre a Faculdade de Ciências Médicas e a Fundação D. Pedro IV não é um
acto isolado. Para além da componente social que é extremamente importante, tem como grande objectivo,
também, promover a investigação na área do Envelhecimento.
Nós somos uma Faculdade nova, e como Faculdade nova temos que pensar no futuro, e o futuro passa
indiscutivelmente por cada vez mais prestarmos atenção aos problemas do Envelhecimento, quer o envelhecimento saudável, quer o envelhecimento com a sua componente patológica.
Nesse sentido, a Faculdade de Ciências Médicas já há 2 anos que iniciou o Mestrado sobre Saúde e Envelhecimento, coordenado pelas Prof. Doutora Amália Botelho e Professora Doutora Ana Alexandre Fernandes. Ao
mesmo tempo, também em perspectiva de futuro e numa perspectiva de pós-graduação, mas agora na área
doutoral, a Faculdade de Ciências Médicas é uma parceira de um curso de Doutoramento sobre Envelhecimento e Sistemas biológicos complexos (curso da Faculdade de Medicina da Universidade de Coimbra), bem como
em parceria com a Faculdade do Minho.
Finalmente, e esta parte diz-me realmente muito respeito, já há anos que, como Professor de Medicina
Interna desta casa, começámos a introduzir no ensino clínico noções de geriatria na cadeira que actualmente
estou a reger a nível do 5.º ano. Inicialmente, essa colaboração fez-se quando eu ainda estava no Hospital Pulido
Valente e em colaboração, na altura, com o Professor João Pedro Gorjão Clara.
Mais recentemente, tenho tido a prazer de colaborar com uma pessoa que tem sido fundamental para o
dinamismo do interesse por esta área, na Faculdade de Ciências Médicas, que é a Prof. Doutora Maria Amália
Botelho que nesta Conferência tem o papel de coordenação muito importante.
Assim, o que vos quero dizer é que neste momento os alunos desta Faculdade, no nível do 5.º ano, dentro
da área de medicina interna, frequentam geriatria não só numa perspectiva teórica, mas também, e no âmbito
desta parceria (já que esta Faculdade caracteriza-se por ter diversas parcerias) com o Hospital do Mar e em
colaboração, com a Prof. Doutora Maria Amália Botelho e com o Prof. Doutor Manuel Caldas de Almeida, os
nossos alunos têm a vivência com os problemas relacionados com a geriatria a nível do Hospital do Mar.
Quero dizer, também, que do ponto de vista da investigação, nós na Faculdade também temos dois Centros de Estudos reconhecidos pela FCT, e um deles é o Centro de Estudo de Doenças Crónicas, em que um dos
seus grandes objectivos é o estudo da inflamação crónica e, como calculam, inflamação e Envelhecimento
estão extremamente relacionados.
Portanto, um dos nossos grandes objectivos é também ter atenção ao problema do Envelhecimento nas
várias perspectivas: a perspectiva assistencial educacional e de investigação – e dentro da investigação, a investigação clínica, investigação transrelacional, investigação básica - e, neste caso, nunca esquecer um ponto muito importante: a investigação também numa perspectiva social.
É por essa razão que esta Conferência sobre o Envelhecimento, que hoje vai ter lugar, é a prova de que o
Protocolo que foi assinado com a Fundação D. Pedro IV está a ser cumprido, porque um dos pressupostos é que
existisse uma Conferência anual sobre este tema no mês de Outubro. Portanto, cá estamos nós, no mês de Outubro, a ter essa Conferência,
Desejo que esta Conferência corra o melhor possível e que, no final da tarde, possamos dizer que enriquecemos, e ao nos enriquecermos estamos seguramente a contribuir para que o problema do Envelhecimento não
seja um problema esquecido, mas realmente um problema mais actual, a que cada vez mais temos que tomar
atenção.
Muito obrigado.
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Eng. Vasco do Canto Moniz
Presidente do Conselho de Administração da Fundação D. Pedro IV
Envelhecimento: Enquadramento demográfico, Consequências, Respostas Sociais, Respostas Políticas
- Exma. Senhora Ministra da Saúde, Dr.ª Ana Jorge;
- Magnífico Reitor da Universidade Nova de Lisboa, Prof. Doutor António Bensabat Rendas;
- Exmo. Presidente do Conselho Científico da Faculdade de Ciências Médicas, Prof. Doutor António Sousa
Guerreiro;
- Senhores Professores;
- Minhas Senhoras e Meus Senhores;
Bem-Vindos à Conferência Internacional Sobre Envelhecimento
O Envelhecimento é uma realidade conhecida nas sociedades desenvolvidas que está já presente na
realidade portuguesa. As suas consequências fazem sentir-se hoje ao nível da carência de recursos financeiros e
de respostas sociais alargadas, e far-se-ão sentir de um modo particularmente preocupante nas próximas décadas, com a realidade que se perspectiva: a duplicação da população idosa.
A Fundação D. Pedro IV, como parte activa da sociedade civil actuando nesta área, não podia deixar de
se debruçar sobre a problemática do Envelhecimento, em especial na procura de novas soluções para tão
importante questão social.
Desde logo, na necessidade de se aprofundar o conhecimento nas vertentes biológica e neurológica que
estão intrinsecamente ligadas ao fenómeno do envelhecimento.
E também, por ser da sua actividade directa, na procura de novas soluções na acção social de apoio à pessoa
idosa.
Neste sentido celebrámos no início deste ano um Protocolo de Cooperação científica com a Faculdade
de Ciências Médicas, da Universidade Nova de Lisboa, tendo por objecto potenciar a colaboração científica e
pedagógica entre a Faculdade de Ciências Médicas e a Fundação D. Pedro IV para o desenvolvimento conjunto na área da formação e investigação em Envelhecimento.
Com esta parceria comprometemo-nos também a organizar anualmente uma Conferência Internacional,
com o pressuposto de fomentar a interacção entre investigação e práticas na temática do Envelhecimento, com
consequências irrecusáveis na análise de políticas públicas que viabilizem as respostas que é indispensável promover e organizar na sociedade.
Desejamos que esta Conferência potencie uma real oportunidade para partilha de conhecimentos e
práticas, que com a sua continuidade no tempo e diversidade será igualmente determinante para o desenvolvimento do presente e do futuro nas áreas da geriatria, inclusive face às alterações nas estruturas económicas,
sociais e políticas que o processo do envelhecimento demográfico determinará inelutavelmente.
Com a participação de especialistas de formação diversificada – o que nos permite que as temáticas do
Envelhecimento sejam também analisadas numa perspectiva internacional comparada -, cremos que conseguiremos alcançar o objectivo de promover um debate científico de elevado potencial particularmente atractivo
face à multidimensionalidade das grandes áreas que nos propomos reflectir: Biológica, Neurológica e Social.
O impacto do Envelhecimento no processo de formulação e implementação de políticas públicas vai
requerer a reformulação e a implementação de políticas destinadas a este estádio de desenvolvimento demográfico e segmento de população que, se no ano de 2010 em Portugal representa já 17,8%, em 2030 poderá
representar 23,30% e, em 2050, 30% da população portuguesa (Eurostat, 2008; Eurostat 2010) 1.
Tendência que de igual modo se verificará na UE - 24% em 2030 e 29% em 2050 (Eurostat 2010; Eurostat
2008), e que significará, também, que em 2050, cerca de 50% da população europeia terá mais de 50 anos
(European Comission, 2009: 20)2.
Neste contexto, e indo ao encontro de iniciativas já em curso no nosso País, propomo-nos colaborar na
reflexão sobre as consequências do envelhecimento e promover as bases do conhecimento que servirão de
suporte às necessárias respostas políticas e sociais.
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1 Eurostat.(2008). “Ageing characterises the demographic perspectives of the European Societies” Statistic in Focus, 72/2008, disponível http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/KS-SF-08-072/EN/KS-SF-08-072-EN.PDF , 28 Setembro 2010
2 Eurostat.(2010). “Regional Population Projections EUROPOP 2008: Most EU Regions FACE Older population profile in 2030” Statistic
in Focus, 1/2010, disponível em http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/KS-SF-10-001/EN/KS-SF-10-001-EN.PDF, 28
Setembro 2010
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Envelhecimento: Enquadramento demográfico, Consequências, Respostas Sociais e Respostas Políticas
Perante o fenómeno multidimensional do Envelhecimento, urge a necessidade de preparar as respostas às
suas consequências. O aumento da esperança média de vida – que em 2010 está estimado em 76 anos para os
Homens e 83 anos para as Mulheres; em 2030 será de 80 anos e 85 anos, respectivamente; e em 2050 de 83 anos
e 88 anos, respectivamente (European Comission, 2009) - implicará, nomeadamente, uma nova estrutura etária
de activos, com maior percentagem entre os 50/ 70 anos e uma nova classe de potencialmente activos acima
dos 70 anos, cuja saúde e capacidade de vida exigirão novas formas de ocupação produtiva.
Repare-se que, em 2030, e muitos dos hoje aqui presentes viverão essa realidade, com o aumento acima
referido da esperança média de vida, as pessoas implicarão para a Segurança Social um esforço financeiro
durante mais 3 anos, isto é, mais 20% do tempo na situação de reforma com os encargos inerentes.
No mesmo sentido, constitui expectativa da comunidade que o Estado/ Segurança Social assuma a provisão dos recursos para o natural aumento das prestações sociais e apoios de saúde.
Segundo a Comissão Europeia, a garantia da provisão das pensões em Portugal no ano 2060, obrigará a
um aumento correspondente a 2,1% do PIB, e correspondente a 1,9% do PIB para os cuidados de saúde.
Isto é, e só na Segurança Social, 2,1% do PIB (European Comission, 2009: 26), para um PIB actual de cerca
de 169 mil milhões de euros dar-nos-á um acréscimo de despesa pública de 3,5 mil milhões de euros. Sendo o
orçamento das prestações sociais da Segurança Social no Orçamento de Estado de 2009, de 19,6 mil milhões de
euros, teremos um esforço de 18 % nas prestações sociais da Segurança Social.
Este acréscimo de esforço significará, em média, para cada activo, um aumento de cerca de 580 euros
por ano, só para a Segurança Social.
Neste contexto, a continuidade da garantia de resposta por parte do Estado ao modelo de apoio social
com mais de meio século exigirá, parece não haver dúvidas hoje, uma nova formulação para a idade de reforma, bem como uma mudança profunda na afectação de recursos públicos e privados.
Assim sendo, impõem-se desde já itinerários de reflexão que configurarão novas respostas sociais, que
garantam a qualidade de vida e o bem estar, tendo em vista o adiamento da institucionalização da Pessoa Idosa, com a generalização do apoio domiciliário, agora com uma significativa componente de saúde, bem como
o reforço das parcerias com as organizações da sociedade civil, em especial instituições de solidariedade social,
na linha da tradição secular do seu serviço às comunidades locais.
Esta reflexão vai conduzir-nos não só a uma nova geração de respostas sociais em quadros de cidadania
activa (Sociedade Civil e Voluntariado), mas também a um ajustamento do paradigma no âmbito das respostas
políticas que apele e garanta a contrapartida dos recursos necessários para a qualidade e continuidade das
prestações sociais e dos serviços de saúde.
Podemos dizer, concluindo, que se impõe uma reflexão sistemática, continuada e profunda sobre os problemas que o envelhecimento coloca e sobre as respostas concretas que o futuro nos vai exigir a médio prazo.
Não o fazer é condenar a Pessoa Idosa ao abandono e ao sofrimento.
De nada adianta proclamar o Estado Social se não houver a coragem de criar, e aplicar, com realismo, as
políticas públicas que o viabilizarão.
Muito obrigado.
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Vasco do Canto Moniz, Engenheiro, é Presidente do Conselho de Administração da Fundação D. Pedro IV, Fundação de
Solidariedade Social, que com cerca de 300 colaboradores actua sobretudo em duas grandes áreas sociais: Infância (onde
detém 7 estabelecimentos em Lisboa com cerca de 800 crianças abrangendo as valências de Creche e Jardim-de-Infância) e
Lares de Idosos e Deficientes, onde gere um dos maiores equipamentos do País, em Lisboa – a Mansão de Santa Maria de Marvila,
com cerca de 160 pessoas institucionalizadas.
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Prof. Doutor António Sousa Bensabat Rendas
Magnífico Reitor da Universidade Nova de Lisboa
Muito bom dia a todos:
- Senhora Ministra da Saúde,
- Sr. Eng. Vasco do Canto Moniz,
- Sr. Prof. Doutor António Sousa Guerreiro,
- Sr.ª Prof. Doutora Amália Botelho,
- Senhores Convidados,
- Minhas Senhores e Meus Senhores,
Queria começar por agradecer o convite que foi pela Organização e dizer que é um gosto muito grande
colaborar nas iniciativas da Faculdade de Ciências Médicas – que é a minha casa de origem –, e é também um
gosto muito grande verificar o progresso que tem sido feito em múltiplas áreas, das quais a área do Envelhecimento é um excelente exemplo.
Para além de vir desta Casa, também venho um pouco deste tema (e estão aqui algumas testemunhas muito
evidentes desse meu percurso) e não me levarão a mal que teça algumas considerações que vão ser de índole
pragmática. Não vou falar de grandes conceitos, vou falar de coisas muito concretas relacionadas com este tipo
de iniciativas.
Em primeiro lugar, queria dizer que há aqui um compromisso comum – todos nós somos da mesma geração, todos nós dizemos e fazemos – e isso é importante, face às dificuldades que estamos a atravessar, porque se
não há coerência entre aquilo que é a nossa palavra e aquilo que são os nossos actos, penso que tudo isto fica
mais fragilizado.
Portanto, Senhora Ministra - agora do ponto de vista de amizade e de consideração , - Sr. Prof. Doutor
António Sousa Guerreiro - retribuo como é lógico aquilo que me disseram – mas, tenho a consciência que há aqui
uma responsabilidade de uma geração que engloba, como é óbvio, Sr. Eng. Vasco do Canto Moniz. Não o
conhecia pessoalmente, mas foi um gosto muito grande ouvi-lo e a forma organizada como apresentou esta
temática também me deixou entusiasmado em relação ao futuro.
Um aspecto muito concreto: talvez não se apercebam que no fim do quarteirão que começa na Fundação D. Pedro IV, está neste momento a ser reconstruída uma parte do Instituto Câmara Pestana aonde vai ser
instalada uma unidade laboratorial única no nosso país.
Foi um esforço de muitos anos. Acho que é o momento certo de se dizer isto, porque vão ficar ali colocados os laboratórios da Faculdade de Ciências Médicas, que nunca teve laboratórios de raiz, e essa infra-estrutura
vai ter a ver com aquilo que foi aqui dito pelo Sr. Eng., porque vai lá ficar instalado o CEDOC – Centro de Estudo
de Doenças Crónicas, da Faculdade de Ciências Médicas. Muita da investigação que vai lá ser feita - espero,
tenho essa enorme expectativa – vai ter também a ver com esta ponte entre o papel da Universidade e o papel
da Sociedade Civil. Já não é possível hoje olhar para a investigação científica sem que isso tenha uma perspectiva objectiva.
Outro excelente acontecimento, que teve lugar há uns dias na cidade de Lisboa, foi a inauguração do
Centro Champalimaud para o Desconhecido. Como algumas pessoas que aqui estão hoje também estiveram lá
presentes. Vou apenas recordar quilo que o Coordenador da Comissão Científica, o Professor Watson, disse a
propósito da investigação sobre o Cancro: - “Sou um investigador de primeira-água relacionado com o Cancro
há quarenta anos e vou dar mais dez anos às pessoas para resolverem a cura do Cancro”.
Ou seja, é importante nesta altura recordar que, em relação à investigação científica, como em relação
a muitas outras coisas, existe uma máquina montada que ao longo do tempo vai gerando a sua própria dinâmica, é essencial que as pessoas percebam que a investigação serve para descobrir. Ou seja, o Professor Watson
disse é que uma coisa é fazer investigação científica, outra coisa é descobrir.
Todos nós (e o símbolo do descobrimento tem muito a ver com o local da Fundação D. Pedro IV) intervimos na Sociedade. A Investigação é uma componente para fazer coisas novas e a capacidade de fazer coisas
novas, implica partilha de recursos. A partilha implica que as pessoas têm de se despir um pouco daquilo que é o
seu papel, o seu estatuto e a sua forma de actuar para, colaborando na área da Medicina, na área da Segurança Social, da Demografia, poderem fazer com que o todo seja mais do que a soma das partes.
Este era o segundo ponto que queria juntar. Penso que há aqui uma conjugação que não foi pensada,
nem foi planeada. Na altura, quando lutei tanto para que o Câmara Pestana fosse um espaço laboratorial de
qualidade, não estava propriamente a pensar que ia lá estar o Centro de Estudo de Doenças Crónicas. Confesso
que quando passava todos os dias para apanhar o elevador do Lavra, pela Fundação D. Pedro IV, nunca estaria
a pensar que esta parceria entre a Faculdade e a Fundação pudesse acontecer.
Mas, são as pessoas que fazem estes novos desafios. É um ponto que me parece muito importante, porque a
proximidade geográfica, neste caso, pode ajudar a que isso aconteça.
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A última reflexão tem a ver com aquilo que o Sr. Eng. Vasco do Canto Moniz falou sobre este problema de
nós podermos assumir responsabilidades na sociedade. Fala-se muito agora de liberdade. Aliás, a palavra liberdade acho que já está esgotada.
Para mim, a liberdade tem a ver com responsabilidade, com direitos e deveres, com o direito a poder
trabalhar, investigar, actuar. Tem a ver com o direito dos Idosos a poderem também ter a sua qualidade de vida.
Mas, se não for associada à responsabilidade, ao dever que todos nós temos de colaborar – desde os Idosos, até
às pessoas que estão aqui sentadas nesta mesa – muito daquilo que nós pensamos aqui com estes projectos
acabaria por não ser realidade.
Não me vou esquecer, provavelmente por muitos anos, daquilo que o Professor Watson disse, porque
todos nós temos alguma capacidade de nos auto-alimentar nos nossos pequenos espaços. O que está aqui em
causa são os desafios que os tempos que vivemos agora nos colocam, que é exactamente fazer diferente e fazer
melhor, com aquilo que temos.
Neste momento fico muito satisfeito e estarei disponível para acompanhar o desafio, da constituição deste nicho de qualidade se desenvolve na área do Envelhecimento. Acho que esta preocupação de estudar as
múltiplas facetas do envelhecimento vem de longe. Aprendi a olhar para o Idoso com uma pessoa que está aqui
muito bem representada, por outro amigo meu, que é o Professor Fausto Amaro. Estou a falar do nosso querido
amigo Almerindo de Lessa.
Termino lembrando o seu ex-libris do, que dizia o seguinte: “Sempre insatisfeito.” Acho que nós só conseguimos realmente mudar e inovar se tivermos uma atitude de insatisfação. Estou a ver muita gente nova, espero que
alguns sejam estudantes da Faculdade de Ciências Médicas, porque os futuros médicos têm aqui um papel também muito importante. Talvez tratar de idosos não seja uma actividade aparentemente tão prestigiante como
operar a artéria circunflexa, ou fazer uma cirurgia altamente complexa, ou ida que vão ter utilizar fármacos altamente sofisticados, mas, esses idosos (tal como disse há pouco tempo quando abri o meu curso na Faculdade),
vão ser os vossos pacientes, os vossos doentes no sentido mais lato do termo.
Vão ser aquelas pessoas em relação às quais vão ter uma enorme responsabilidade em relação á qualidade de vida presente e futura.
Portanto, o Sr. Eng. Vasco do Canto Moniz passou-me a informação relativa à história da Fundação. A
Fundação D. Pedro IV tem alguma ligação ao Instituto Câmara Pestana. Mais uma razão para juntarmos esforços,
não perdendo a nossa identidade. Com rigor, mas também com generosidade e com o exemplo para podermos
fazer com que estas iniciativas, que estão um pouco dispersas, possam transformar-se num todo para bem da
Sociedade, que é aquilo que nós realmente queremos. 6
Dra. Ana Jorge
Sua Excelência a Ministra da Saúde
Senhor Presidente da Fundação D. Pedro IV,
Senhor Vice-Presidente do Conselho Científico da Faculdade de Ciências Médicas da Universidade Nova
de Lisboa,
Minhas Senhoras e Meus Senhores,
É com gosto que participo nesta conferência cujo tema não pode ser mais actual. Ao longo deste dia de
trabalho, a reflexão sobre o envelhecimento da população e os desafios que esta realidade coloca serão
amplamente discutidos.
Aguardo com expectativa o resultado dessa reflexão que importa a todos e que é essencial na saúde.
As alterações demográficas que marcam as sociedades modernas conduziram ao envelhecimento da
população, colocando aos Estados e às famílias desafios novos para os quais não estavam preparados.
Portugal, à semelhança de outros países da Europa do Sul, acelerou, nas últimas décadas, o processo do envelhecimento da população, como resultado da baixa de fecundidade e do extraordinário aumento da esperança
média de vida.
Hoje, o cidadão tem acesso a cuidados de saúde de qualidade, a par de terapêuticas que permitem
controlar a doença que é inerente ao processo de envelhecimento nas sociedades modernas.
Proporcionar a oportunidade da população portuguesa envelhecer com saúde, autonomia e independência é uma das missões que o Serviço Nacional de Saúde tem vindo a cumprir, ao longo dos seus 31 anos de
existência.
Falar de envelhecimento da população não é falar de um problema. É assumir um desafio à responsabilidade individual e colectiva, de manter integrado um grupo de cidadãos que está a viver uma fase natural e útil
do seu ciclo de vida.
Uma fase que deve ser vivida de forma saudável e autónoma. Uma fase que exige respostas especificas do Serviço Nacional de Saúde e a adopção de comportamentos individuais que contribuam para o um envelhecimento
activo.
Depois de darmos mais anos de vida, agora cumpre criar condições a esta população mais velha e sabedora para continuar activa e contribuir para o desenvolvimento equilibrado das sociedades modernas.
Sabemos que é nesta fase da vida que a doença crónica, por vezes incapacitante, como por exemplo,
as doenças cardiovasculares, as demências ou as doenças mentais, está mais presente.
Viver mais tempo e com mais qualidade de vida é a meta que orienta as iniciativas que têm vindo a ser
desenvolvidas pelo Serviço Nacional de Saúde e que devem orientar o comportamento dos cidadãos.
Importa destacar que a criação da Rede Nacional de Cuidados Continuados Integrados, no ano de 2006,
constitui uma iniciativa sem precedentes em Portugal.
Esta rede, com as suas diferentes tipologias, integrada no Serviço Nacional de Saúde, dá resposta aos
idosos que, não estando em situação que justifique internamento hospitalar, necessitam de cuidados que garantam a sua reabilitação e reintegração social.
No passado dia 10 de Outubro, no âmbito das comemorações do Dia Mundial da Saúde Mental, foram
apresentadas medidas que permitem alargar o âmbito de intervenção da Rede Nacional de Cuidados Continuados Integrados a pessoas com perturbações mentais graves, reforçando a articulação entre o SNS e a Segurança
Social, já existente.
Uma das tipologias da RCCI, que muito tem contribuído para a melhoria da qualidade de vida dos idosos
é o apoio domiciliário, através das equipas multidisciplinares.
Desta forma, o Serviço Nacional de Saúde promove a recuperação das capacidades do idoso permitindo
o seu regresso a casa e a sua reintegração na comunidade, na família e no tecido social.
Tão importante como a reintegração é a promoção da saúde e dos cuidados de prevenção dirigidos aos
mais velhos.
Este é o caminho mais eficaz e eficiente para melhorar a qualidade de vida, quando já ultrapassámos a
batalha do aumento da longevidade, potenciando os recursos disponíveis na área da saúde e do apoio social,
mas com a consciência que o envelhecimento é uma questão transversal a toda a sociedade, em que os serviços de saúde são só um dos parceiros.
Está provado o benefício da prevenção dos factores de risco comuns a várias patologias incapacitantes.
Por isso, é tão importante a adopção, por parte dos mais velhos, de estilos de vida mais saudáveis e de comportamentos que garantam um envelhecimento saudável e activo. Mas importa ter presente que o envelhecimento
saudável se prepara ao longo da vida, e que a adopção de estilos de vida saudáveis quer alimentares quer de
actividade física, por exemplo, se faz ao longo de todo o ciclo da vida para que possam ter resultados eficazes
mais tarde.
7
É, também, importante o acompanhamento, por parte da equipa de saúde, liderada pelo médico de
família, do estado de saúde deste grupo populacional.
O reforço da capacidade de resposta das unidades de cuidados primários, permite que a saúde dos mais
velhos seja gerida, em constante diálogo com o doente, e com o envolvimento de todos os elementos da equipa
de saúde. Permite assim ir implementando estratégias terapêuticas e comportamentais que asseguram a qualidade de vida, através do controlo da doença crónica.
É o médico de família que melhor conhece a saúde do doente, da sua família e o respectivo enquadramento socioeconómico, e por isso, reúne as condições para orientar a saúde dos mais velhos e melhorar a sua
qualidade de vida.
Pois só assim permitimos que este grupo essencial ao equilíbrio das sociedades possa continuar assumir o
seu importante papel. O papel do mais velho, do sabedor, do familiar que devemos ouvir e cuidar para que,
durante mais tempo, nos possa ajudar a orientar com as suas experiências.
Antes de terminar desejo a todos os participantes um excelente dia de trabalho.
Muito obrigada.
8
B. Sessão de encerramento
Prof. Doutor António Sousa Guerreiro
Presidente do Conselho Científico da Faculdade de Ciências Médicas, da Universidade Nova de Lisboa
Queria que estas minhas palavras não fossem umas palavras de circunstância. Não foi por acaso que estive, e estive com todo o gosto, aqui grande parte do dia.
Na ausência do Professor José Caldas de Almeida, por motivos de força maior, eu gostaria só de lembrar
as palavras do mesmo na brochura da Conferência Internacional Sobre o Envelhecimento: “ - Com esta iniciativa, pretendemos contribuir com informação, reflexão e debate em temas relevantes na área do Envelhecimento
e proporcionar a possibilidade de encontro, e eventual colaboração, entre profissionais dedicados a esta temática.”
Eu quero, e porque estive presente tive a oportunidade de assistir pelo menos em parte de todas as intervenções, dizer que é minha opinião – e é isso que transmitirei ao Director da Faculdade de Ciências Médicas –
que o objectivo foi conseguido.
Foi conseguido por duas razões: em primeiro lugar, quero agradecer a todos os palestrantes, estrangeiros
e nacionais, o nível das vossas comunicações. Não sendo eu um perito da matéria, de modo algum, mas ser
alguém há bastantes anos aqui na medicina (sou um internista, um especialista de medicina interna), e portanto
todos os dias vejo, como dizia o Professor Manuel Gonçalves Pereira, como o doente tem de ser abordado de
uma forma holística.
Quero-vos dizer que muito aprendi e não tenho dúvida que muito daquilo que aqui se passou é seguramente, tem de ser, uma fonte de inspiração para que Faculdade de Ciências Médicas, e neste caso em parceria
com a Fundação D. Pedro IV, tenhamos muito trabalho pela frente.
Por outro lado, um ponto também fundamental: eu quero agradecer vivamente a participação da assistência, porque, realmente, julgo que independentemente da qualidade dos palestrantes e das suas intervenções, é fundamental nós sentirmos quem está do outro lado. Não tenho dúvida que o modo como ao longo de
todas essas horas as pessoas se mantiveram aqui, e o ar atento e o modo interessado como aqui estiveram, foi
realmente um estímulo para todos nós.
Por isso, eu queria terminar agradecendo, com uma palavra muito especial, às moderadoras destas sessões, nomeadamente a Prof. Doutora Amália Botelho e a Prof. Doutora Ana Alexandre Fernandes – as Coordenadoras do Mestrado em Saúde e Envelhecimento – e terminaria também, e com a certeza que o Sr. Eng. Vasco do
Canto Moniz está comigo, com o muito gosto que tivemos em tê-los aqui. Desde já, teremos muito gosto em tê-los
aqui daqui por um ano, e seguramente não só e com outros, que se tiverem gostado desta sessão, possam trazer
convosco.
Uma vez mais agradeço a todos a vossa presença. A Faculdade de Ciências Médicas e a Fundação D.
Pedro IV estão aqui em interconexão para trabalharem em prol da melhoria de aspectos relacionados com o
Envelhecimento.
Muito obrigado.
9
10
II. Notas biográficas, Resumos e Comunicações
Prof. Doutora Ana Alexandra Fernandes
Moderadora “Abordagem Socio-Biológica ao Envelhecimento”
_nota biográfica / biographical note
Doutora em sociologia, ramo demografia e Professora Associada com Agregação no departamento de
Saúde Pública da Faculdade de Ciências Médicas da Universidade Nova de Lisboa (FCM/UNL).
É co-responsável pela coordenação do Mestrado em Saúde e Envelhecimento.
É também investigadora no Centro de Estudos de Sociologia da Nova (Cesnova) onde coordena o grupo
de trabalho Mundos Sociais, Mobilidades e Trajectórias.
A actividade de investigação tem-se centrado na problemática do envelhecimento e os seus impactos
sociais e políticos. Tem desenvolvido trabalho sobre as relações com o emprego e a vida activa, a organização
de serviços e as condições de saúde num contexto de crescimento da longevidade. Tem também actividade de
investigação na área das migrações e saúde. É autora de vários livros e tem artigos publicados em revistas nacionais e estrangeiras.
_contactos / contacts
Faculdade de Ciências Médicas
Universidade Nova de Lisboa (FCM, UNL)
Campo dos Mártires da Pátria, nº. 130
1169-056 Lisboa, Portugal
Tel: +351 218 803 000
Fax: +351 218 851 920
11
12
The medical and care challenges of a growing old population.
Prof. Doutor Tony Warnes
_resumo / abstract
This presentation will take as understood the projected increases in average life expectancy at birth and at
50, 60 and 70 years-of-age, in the number of older people, and in the capacity of health and social care services
that will be required to meet the population’s needs. It will concentrate on specific treatment and care challenges, and discuss alternative ways of meeting them. Specifically, it will examine closely the implications on services and care professionals of a rising number of people with chronic conditions, functional limitations and cognitive deficits. Three particular challenges will be considered:

The care demands of a rising number of people with dementias.

The increasing advocacy for improved dementia care, through changed priorities and innovative approaches.

The perceived imperative of treating and supporting more frail older people in their own homes rather
than in medical and care facilities.
The first challenge is a direct consequence of demographic and epidemiological trends, the second is
partly an expression of rising quality of life expectations, not least among younger adults, and the third is being
driven by both people’s life-style preferences and by government’s (and insurers’) concerns to contain the rising
cost of long-term care, whether in residential institutions or people’s own homes. Examples of innovative approaches to care from across the world, including those using new forms of telecare and assitive technologies, will
be described and assessed. Both the potential benefits and the possible risks of innovative care will be considered.
_comunicação / paper
Introduction
This paper identifies and illustrates the principal pressures and influences upon health and social services for
older people in Western European countries early in the twenty-first century, and makes suggestions about the
service and practice development priorities. The aim is to provide a framework by which to identify and understand the roles and challenges facing specific services and interested parties, including older people themselves
and their family members. The focus is on pervasive forces and long-term tendencies rather than specific legislative and administrative acts. A comparative view is deployed because many economic, social and political pressures are common to all affluent countries, and it is instructive to move away from the usual narrow focus on national priorities.
The paper has four themes, which succinctly, are about legacies, the reasons for the low standing of services for older people, current pressures for change, and priorities for development. The legacies of most interest
are those that account to some degree for several characteristics of current services: the divisions of roles, their
strengths, weaknesses and idiosyncrasies and their low prestige and marginalisation. Among the current pressures
for change, the basic facts are universally understood – ‘we are living longer’ and ‘there are more and more older
people’. Another pressure has an equally broad foundation but is less frequently cited as a general driving force –
people’s rising expectations for improvements in treatment, care and support, in general, for their older relatives,
and for themselves when they reach old age. The final section of the paper proposes a number of service and
information developments that will make a contribution to increasing both the quantity and the quality of older
people’s services. The framework has been developed from a population-based and holistic conception of the
needs of older people for treatment, care and personal support. Its scope is limited to formal health and personal
or social care services provided by both formal (or paid) carers, whether employed in the public, voluntary or forprofit sectors, or by individual families, and does not extend to the important welfare dimensions of income support
and ‘social housing’ (housing subsidised by public or charitable bodies).
Population ageing in countries of growing affluence
For several decades the implications of demographic ageing for our societies and particularly the welfare
and care systems have been documented, debated and recruited to advance ideological, political, institutional
and professional goals. The older population is rapidly growing, birth rates are falling, and the number of people of
working age to each older person (the crude old-age dependency ratio) is falling – the trends are shared in every
OECD country (Figure 1). This prompts projections about the rising requirement for the health and social care of
sick and dependent older people, although very often no allowance is made for the falling trends in age-specific
morbidity and disability rates. From the 1970s, many commentators predicted an increase of disability among
older people, not only from rising numbers but also because improving medical technology would save people
from dying without curing them, producing an exponentially increasing burden of health care services and costs.
13
Fries’s (1980) ‘compression of morbidity’ model attracted world-wide attention but, rather perversely, it most often
prompted predictions of more extended disability.
Source: European Science Foundation 2010.
Ageing, Health and Pensions in Europe: An Economic Perspective. European Science Foundation, Strasbourg.
A note on population ageing in Portugal
It will be useful, especially for international delegates, to note some particularities of Portugal’s changing
demography. In 2007-08, I was privileged to work on a project commissioned by the Aga Khan Foundation in Lisbon on the health service implications of the rapidly ageing population and the service development priorities in a
rapidly developing economy. The study was directed by Dr Carlos Ferreira with the assistance of Boston Consulting
and a number of European experts. The following facts and comments are from the very informative final report
(Aga Khan Foundation Portugal 2008).
Population ageing in Portugal, as compared to the countries of northern Europe, began much later, during
the second half of the 20th century, and has since been exceptionally rapid. It took about 50 years for the proportion of the population aged 65 or more years to increase from 10 to 20 per cent (expected in 2020), but the projections indicate that the share will grow within another 25 years to reach 30 per cent in around 2045 (Table 1). Apart
from rising longevity, two strong trends are driving the accelerating ageing trend: the rapid decline in fertility, and
substantial (and rapidly fluctuating) net migration change (there have been large flows to and from Northern
Europe, South America and, more recently, Eastern Europe). Population growth between 1991 and 2001 was to a
large extent the result of immigration rather than natural increase (or births). The recent economic downturn will
raise concerns that the balance between births and deaths is unfavourable and that population declines are very
likely, particularly if in-migration falls. Three years ago, demographic projections by the National Statistical Institute
(INE) for the 2050 horizon suggested a substantial population decrease that could be as much as one-quarter of
the population within 50 years, alongside a pronounced ageing of the population.
Table 1. The representation of older people in Portugal’s population 1980-2050
Year
Aged 65+ years (%)
1960
1981
1991
2001
2010
2020
2030
2040
2050
8
11
14
16
18
20
24
29
32
Source: INE, General Population Census (1960-2001) and resident populations’ projections (2010-2050).
Older people and the requirement for treatment, care and support
Gerontological issues and services came to the forefront of British policy and commercial concerns during
the 1990s (Harper 2000; Warnes 1999a). If the initial responses were as elsewhere most concerned with balancing
the public expenditure account and macroeconomic management, the need to raise the quality-of-life of people
with impairments and chronic conditions has also been recognised. It remains the case, however, that most politicians, economists and current affairs journalists are concerned more by the ‘burden’ of the growing number of
older people on the rest of the population than the promotion of older people’s interests – the inverse of gerontologists’ priorities. Even the current mantra, that statutory services should be reorganised to promote independence,
is inspired more by governments’ wishes to suppress utilisation than to meet the public’s demands. How then do
those with ‘gerontological imagination’ see the prospects of our ‘ageing societies’?
Few are yet aware that the deterministic conclusion that a growing older population leads to a growing
14
volume of disability is not now the most likely scenario. While this is not the place for a detailed account of demographic and health in later life trends, the associations between the number of old people, the prevalence of disability, and the demands for treatment, care and support are fundamental controls on the rate of increase in
coming decades of the requirement for health and social care. Since the late 1990s, a succession of analyses of
large United States datasets have shown that that country’s old age disability rates have recently been falling at
an increasing rate (Caselli and Lopez 1996; Crimmins, Reynolds and Saito 1999; Manton, Corder and Stallard 1997;
Manton, Stallard and Corder 1998; Murray and Lopez 1997; Schoeni, Freedman and Martin 2008; Stearns Norton
and Yang 2008). One source has been the Long-Term Care Surveys which have categorised an individual as
chronically disabled if he or she has a functional limitation lasting for at least 90 days. Age-specific disability rates
declined during 1982-89 at about 1.1 per cent per year, and during 1989-94 at about 1.5% p.a. At the current
prevalence rate the number of older Americans with chronic disabilities will remain around 7 million even as the
total older population grows. Manton’s team have made projections of a ‘disability adjusted support ratio’, viz. the
number of adults aged 20-64 years for each chronically disabled person aged 65 or more. The current figure is 22
and if disability rates stay constant by 2050 the ratio falls to 8, but if they continue to decline by 1.5% p.a. the ratio
will increase.
Similar trend data are not available for the United Kingdom, but since the 1960s there have been accelerating falls in age-specific old age mortality and it is highly likely that they have been accompanied by decreasing
morbidity (Bone et al. 1995; Charlton and Murphy 1997). It would however be prudent to except disability from
organic brain damage, for although age-specific stroke induced deficits can be reduced by better management
of at-risk patients, and despite some reports of an inverse association between educational attainment and the
age-specific incidence of Alzheimer’s dementia, age does appear to be the most influential factor. Just as the
idea has recently spread that older people are not and need not be economically and socially unproductive, and
the stereotype that all older people are frail and sick is now more often rejected than advanced, so will we see the
realisation slowly spread that age-specific morbidity and disability rates have been falling and that in the long term
age-specific disability tends to fall in line with age-specific mortality.
It is possible that the day when the dominant concern of policy makers turns from how to 'cope' with the
growing number of older people to finding the best ways of raising the quality and responsiveness of care may
never come, but the balance of the concerns is slowly changing. The more that ‘ageing’ is perceived as a priority
issue, the more attention it receives (partly through increased funding), and the more that the deficiencies of current care are exposed. I argue that coming decades will see a rising pressure to increase the capacity of health
and social care services for sick and frail older people, but also growing demand that their quality is improved.
Pressures and challenges
For half-a-century, the health services have accounted for a growing share of both public expenditure and
the gross domestic product in most affluent countries. Governments and consumers (or patients) around the world
have supported increases in the proportion of the gross national product that is spent on health care. Powerful
supply factors (e.g. new drugs and therapies) and demand influences (e.g. people’s rising expectations for a
healthy life) are driving the change. Further description of the demand pressures are set out on the left side of
Table 2. The pressures are felt by not only the medical profession and health-care providers, but also governments
and commerce more broadly. Although there are many major differences between state-run ‘national health
services’ and systems largely comprised of non-government providers, there are also many similarities. In both the
United States and the European welfare states, the government spends hugely on medical training and research,
invests substantial amounts in new hospital construction, and heavily underwrites the medical care of children,
pregnant women and older people, and the provision of emergency services.
General and exceptional pressures on health and social care for older people
A majority of health-service contacts and episodes are with people aged 60 or more years, and they are of
two kinds. Most are with ‘age-blind’ or ‘all-adult-age’ services, as with acute treatments, general practice and
accidents and emergencies. It should therefore be noted that the massive expansion and considerable improvements of primary care and hospital acute services in many European countries over the last few decades – as in
cardiovascular care, orthopaedics and cancer diagnosis and treatments – have brought great benefits to older
patients. The second form of contacts are with services dedicated to older people or, more specifically, to older
people with chronic disabling conditions, and these comprise both specialist residential or nursing homes and specialist community-health teams that carry out home (domiciliary) visits.
15
Table 2 Principal influences and pressures upon health-care and social-care services
Sources of long term change
Supply-led change
Increases in capability: advances in clinical science
and medical technology.
Clinical innovators and entrepreneurs, including providers of complementary therapies.
Voluntary organisation enterprise, as with hospices,
day centres, services for people with dementia
and older homeless people.
Corporate and institutional innovation and development, as most notably by pharmaceutical companies.
Demand-led change
Rising expectations for treatment and care.
Rising individual expectations:
Secularism, ending belief in predestination.
Decreasing deference to professional opinion.
Perfect body, full life norms of the life course.
Rising societal expectations:
Expanding and increasingly declamatory media
coverage of biomedical science, health service
and social dysfunction and deviation issues, from
gene therapies to paedophilia.
Rising prominence of health in political manifestos.
Growth of ‘special interest’ user/patient groups,
alliances and movements
Timeless management, economic and political
constraints and pressures
Public or state sector
To maximise equity in the allocation of treatment and care,
variously on moral, ideological and electoral advantage
grounds.
To contain public expenditure and tax (fiscal burden)
given policy (or volume of supply) decisions.
To maximise the private sector’s contributions to capital
investment, and patients’ and clients’ contributions to
current revenue.
All sectors
To contain costs and keep within budgets.
To maximise performance (outputs, billing or welfare gains)
and therefore efficiency of the services.
To minimise fraud, excess remuneration among practitioners, and excess profits among suppliers.
To minimise media and public complaints, for profit or fiscal
reasons (costs of litigation and compensation), and
electoral reasons (mainly but not exclusively in the public sector).
Only private (for-profit) sector
To maximise returns on capital (profit).
To increase the number of subscribers and customers, to
enable the company to grow and protect itself against
competitors.
To maximise government and charitable subsidies and
underwriting of fees, training costs and capital investment.
The duality means however that elderly people’s services experience both the pressures common to the
generic health and social care services and some special to themselves (Table 3). Paradoxes form, as in geriatric
medicine, which has repeatedly been marginalised in acute hospitals. Although it might seem that many of the
their cases are ‘community patients’, ‘comprehensive geriatric assessment’ requires access to the specialist diagnostic and condition-specific knowledge of patients The ‘Cinderella standing’ is common to the medical and social care of older people but has different multiple roots. As the services dedicated to and named as ‘older people services’ are concerned principally with the management of chronic conditions, with the rehabilitation of patients following severe events such as strokes and heart attacks, and with maximising the comfort and wellbeing of
the patients (as through pain relief), much of this work takes place ‘in the community’ and outside acute hospitals.
That is one reason why custom and practice deems these services less prestigious than other clinical and caring
roles. An unfortunate consequence of attaching ‘older people’ or ‘geriatric’ to the services that treat, care and
support people with disabling chronic disorders, is that in the health and social care discourse ‘old’ has become
synonymous with people or patients with these conditions. The nomenclature is both a source of confusion and a
foundation for stereotyping ‘old people’ as having the more intractable diseases, disorders and disabilities.
Other factors underlie the perennially low standing of older people’s services (Table 3). Today’s concerns
should be kept in perspective. No service today would justify the opprobrium that Charles Dickens (1865) heaped
on malpractice in poor-law workhouse care: ‘[in] the majority of shameful cases of disease and death from destitution [in the workhouses] ... the illegality is quite equal to the inhumanity’. In Britain, the most influential modern
‘attack’ was Peter Townsend’s (1962) indictment in The Last Refuge of inhumane practice within residential care
and nursing homes. Nearly five decades on and despite the hopes raised by the Registered Homes Act 1984 and
the more comprehensive regulatory regime that has developed since the Care Standards Act 2000 (Department
of Health, 2001). More broadly, the promotion of ‘a personalized response, the treatment of older people with
dignity and respect and the rooting out of age discrimination’ is one of the four principles behind the NHS National
Service Framework for Older People (Philp, 2004: 2). The implication is that care staff aim to deliver more than
‘task-orientated’ care and are skilled to practise ‘person-centred care’, a new government promises an improved
registration and inspection system to improve the quality of care in the sector and to sweep away neglect and
abuse. It is reasonable to conclude that there is little chance of bringing about enduring and general improvement unless the reasons for the perennially humble state of older people’s services are understood.
The deepest root is probably the timeless aversion of the not-old from sick and dependent older people for
presenting images of their own possible destiny (see de Beauvoir 1970). As negative attitudes towards old age are
widespread in society, it is little surprise that they manifest in staff attitudes and the low priority for funds in the dedicated services. Attitudes are reinforced by the characteristics of older people’s care needs and the forms of provision they require. Advanced age leads to a high incidence of acute health conditions and prevalent chronic and
multiple disorders. The latter bring a considerable need for the sustained management of disease and disorders,
16
for rehabilitation, and for personal care and support to overcome dysfunction and disability. Few such services are
of interest to fundamental biological science or stimulate ‘brilliantly heroic’ clinical interventions, and they do not
therefore attract scientific and professional prestige (or high remuneration). Instead the requirement is for a combination of frequent monitoring, fine therapeutic adjustments, protracted rehabilitation and palliative care along
with a humane, holistic and person-centred or empathetic approach to care.
Table 3. Sources of exceptionalism in older people’s treatment, care and support
Effect
Characteristics of the influence or bias.
Reactions to older people
Carers’ aversion from older
people
Formal carers’ fears of old age, chronic disability and death, unleavened by few non-kin
social contacts with older people and no tutoring in older people’s experiences, concerns and expectations.
Intergenerational distance
and
disrespect
Age or generation differences in values and attitudes associated with differences in both
education and cohort (or ‘period’) experience lead to group legitimation and reinforcement of carer’s disdain.
Societal devaluation of
older people
The social construction of older people as ‘unproductive’ and a ‘burden’ mixes with rational and instinctive assessments that the health and lives of children and young people
are ‘more worth improving and saving’.
Prestige of older people’s services
Care not cure
High needs for chronic management, rehabilitation and care, but not cure.
Empathetic and holistic
care
High requirement for holistic approaches which are sensitive to individuals’ anxieties
about irrevocable decline or impending death and the implications for their close relatives.
Complex funding and copayment arrangements
The ‘package’ of care requires inputs from health and social care and non-professional
domestic services, producing complexities in the allocation of costs to budgets, among
the providing organisations and between them and the patient or service user.
Weak evidence-base for
reform
Low prestige reflected in late and modest development of related academic fields, producing a weak theoretical critique and evidence base about (i) older people’s needs
and preferences, (ii) the attitudes of clinicians, professionals, managers and politicians,
and (iii) the effectiveness of different models of treatment and care organisation
Isolation of some older people
Social vulnerability
Some patients and service users are socially isolated and have no relatives or friends to
advocate on their behalf.
Some older people can therefore require several different treatment and care services over a short period,
for example: surgery and the management of, say, blood pressure or blood sugar and multiple medications; empathetic mental health interventions; highly skilled nursing care; and high amounts of personal and domestic support. The provision of such care normally requires several organisations, is intrinsically difficult to do efficiently and
‘seamlessly’, and generates multiple opportunities for cost-shifting, neglect, service withdrawals and inequity. Provision is also confounded by ideological, ethical and policy questions, such as what are the ‘minimum acceptable
standards’ for the care and quality-of-life of the weakest individuals, or about funding and payment arrangements,
and about political and ethical judgements about redistribution among destitute, poor and not-so-poor older recipients of care.
A third source of marginalisation is the exceptional vulnerability, powerlessness and apathy of a minority of
seriously ill and incapacitated older people. A small proportion of those who reach advanced old age are quite
alone, with no spouse, children or other relatives in touch or concerned for them. Clinical depression and suicidal
tendencies have a high prevalence in the group, and many are undemanding and supine. These traits combine
with ‘institutional ageism’ to allow low standards of care, disrespectful and unprofessional treatment and, in the
worst cases, financial, mental and physical abuse.
Tasks for the future
Both the demographic imperative and the population’s rising health and care expectations imply that over
the coming decades, both the quantity and the quality of treatment, care and support services for older people
must be raised. Given, however, the highly labour-intensive nature of personal and social care, and that presently
much is conducted by low-paid staff with only rudimentary, essential training (that emphasises minimising the likelihood of perpetrating harm to the carer and the cared-for person), most commentators accept that simply to expand current forms of service delivery is unaffordable and not the way forward. New types of service will be necessary, and new thinking is required about who is responsible for different types of tasks, in which combinations,
and with what kinds of support. The thinking needs to put aside the segmentation of responsibilities as between
health-services and social services, between hospitals and primary/community care, and between formal carers,
family carers, and privately-employed care assistants. In short, we need to consider the current and potential roles
17
of all those that contribute to the treatment, care and support of older people, including older people themselves.
The spectrum of interested parties or ‘stakeholders’ is indicated on Table 4.
Table 4. Stakeholders in the development of health and social services for older people in Western European countries.
Major groups
Specific interest groups
Users
General public (including those not yet born).
Current patients and service users.
Advocacy and user-representative organisations
Carers and
relatives
Relatives and others directly involved in providing informal care and
support.
Other concerned relatives.
Practitioners
Physicians and their representative bodies.
Other clinical and professional groups.
Ancillary staff.
Statutory and publicly-financed agencies.
For-profit companies.
Non-profit organisations.
Financing organisations and their share-holders.
Government treasuries.
Government policy ministries.
‘Think tanks’, commissions and international advisory agencies
Managers,
entrepreneurs
and provider organisations
Politicians,
experts and technocrats
Influence
Rising
Recently rising
Falling
Variable
Rising
We must recognise that organisation change in the health and social service is generally incremental and
slow – there are many sensible and some self-interested reasons not to disrupt existing patterns of provision – but
also that change does occur and can be promoted. One of the greatest challenges is to institute new patterns of
multi-disciplinary and co-operative working, not only between health and social care staff, but even more between paid and volunteer staff and family carers. It is particularly important not only to recognise the very large
role of family carers – dominantly spouses of both genders and daughters among the wider family. There has been
a vigorous debate in the Nordic countries and The Netherlands about whether the public provision of social and
personal care substitutes for (or ‘crowds out’) family care, but the most recent evidence-based contributions stress
the complementarity of the two forms of provision. They show that publicly-provided care supports family carers
and improves the care and support of older people (Haberkern and Szydlik 2010; Litwin and Attias-Donfut 2009;
Motel-Klingebiel, Tesch-Roemer and von Kondratowitz 2005; Sundström, Malmbergand Johansson 2006).
Very recent papers argue that formal social services support should become more flexible, by recognising
that in not all cases is there only on primary family carer (Merz and Huxhold 2010; van Putten et al. 2010). Particularly as the popularity of part-time paid word spreads among both men and women, new, more complex configurations of active care-giving are arising and can be expected to grow. Although clearly it will be more difficult for
social services departments to develop individualised packages of care in collaboration with more than one family
carer, this looks to be an increasingly important way by which both the quantity and quality of care can be raised.
A related issue is developing the future role of privately-paid carers with particular attention to raising the
quality of the care and support that they deliver. The practice has grown very strongly in several southern and
central European countries (particularly Italy) and in Israel (Ayalon 2009; Degiuli 2010; Grootegoed, Knijn and da
Roit 2010). The arrangements by which paid carers support family members are to some extent haphazard, particularly when the employed person does not have residence status, or when the employer wishes to hide their
financial circumstances from the authorities. The arrangement has clear positives, however, including the fact that
the cared-for person remains in a family home and living with a close relative. The carers can provide more in the
way of diversion, engagement and emotional responses than is true of many carers in formal residential institutions.
The arrangements are however open to abuse, and Ayalon (2010) indicates that there are many cases of neglect
and abuse in the Israeli 24-hour live-in care system. Rather than marginalise such arrangements, the sensible
course will be to encourage new configurations of family and privately-paid carers, to offer them more advice and
support, and to encourage openness and minimum standards.
Many other opportunities and means by which to raise both the quantity and quality of treatment, care
and support are already apparent – there is considerable innovation and development around the world. Some
key options are indicated in Table 5.
18
Table 5. The tasks for treatment, care and support in the coming decades
Tasks and components
Opportunities and means
Expand quantity
Increase formal care provision
More investment in training
Maximise exploitation of telehealth and other assistive technologies
Increase capacity of family carers
Continue to develop information and guidance, as about specific disorders, e.g. dementia, Parkinson’s disease, diabetes treatments
Maximise support through telehealth and other assistive technologies
Develop the role of ‘volunteers’
Spread successful models of recruitment, retention, training and management (as from hospices).
Improve security or continuity of funding
Develop the role of privately-paid carers
Improve registration and training of carers. Offer families that employ
carers more flexible advice and support
Raise quality
Improve status and skills of formal care staff
Improve and increase training
Improve pay and develop career structures
Improve contributions of family carers,
volunteers and privately-paid carers
Develop accessible information
Develop support and advice services
Introduce more flexible support of family carers and of privately-paid carers by formal health and social care staff
The changing role of residential and nursing homes
The role of care and nursing homes has been changing in several northern European countries, Australia,
New Zealand and North America. In these regions, both the general public and the government increasingly see
care homes as a ‘last resort’, and believe that a frail older person’s quality of life, morale, dignity and autonomy
are maximised if they remain in their own homes. Local authority ‘community care’ budgets are increasingly targeted at supporting older people in their homes with domiciliary care. Private fee-payers (and their carers and
relatives) have been of the same mind. The result has been that both the average age and the level of dependency of a person on entry to a care home have been rising, while the duration of a resident’s stay before they die
or are transferred to a more specialist care facility has decreased sharply. If, 30 years ago, many care-home residents were active, mobile and optimistic, and collectively created mutually supporting ‘communities’, a high proportion of today’s residents have serious physical or cognitive impairments, and require considerably more one-toone help, as with getting out of bed and to a communal breakfast room or with medication and eating.
The need to engage with, support and bolster the ‘personhood’ of residents with dementia is now widespread. Many agree that the strong emphasis on safety (as with drugs administration and fire protection), minimising risk and hygiene need a stronger counterweight concern with other aspects of the residents’ wellbeing, including nutrition (although that is generally managed better than on long-stay wards in acute hospitals) and psychological wellbeing. Opinion is building that a service priority is to improve ‘psychosocial care’, especially of residents
with dementia and other cognitive disorders. Care home staff members have to take more responsibility for providing stimulation and rewarding activities. Common humanity, warmth and empathy are no longer enough to
support such residents: specialist skills are required, but we have not yet put in place the arrangements by which
these skills can be learnt or implemented.
The training of care staff in contemporary Britain is quite different from professional training, as of doctors,
nurses, therapists and social workers. Professional training is through a foundation undergraduate degree (or in
some cases diploma) supplemented by specialist vocational accreditation courses. The training of care staff, by
contrast, takes place almost entirely at the workplace and alongside the delivery of care: it is learning by experience, observation and demonstration. In recent years, minimum training requirements have been raised, the government has made large sums available to enable the sector to purchase formal training, and the employers have
agreed systematic specifications for induction. The problem is the poor delivery of the training. It has to be organised and provided in between more pressing hour-to-hour tasks, and in settings where, in most cases, there is little
training expertise and there is inadequate supervision and assessment, largely because of the lack of funds. We
are only at the beginning of adjusting the delivery of training to the changed needs of the residents.
Group homes for people with dementia
The group home concept derives from a Swedish model, was adopted in the United States 20 years ago,
and has been vigorously developed in Japan (Day, Carreon and Stump 2000; Janicki, McCallion and Dalton 2003;
Malmberg and Zarit 1993). The rationale for the homes is described very well in a report of the presentations by
Swedish advocates at Tohoku Fukushi University in November 1996 (see http://www.sendai-senior.org/eng/
bokememoe.htm). The features that distinguish group homes from existing nursing homes and care homes are:
 The homes are small – commonly with six to eight residents.
 The residents are encouraged to be as self-reliant as possible
 The staff are intensively trained in dementia care
Group homes are an interesting cross-over between the biomedical and psychosocial models of the care
19
of people with dementia. As described by the authors of an evaluation of over 1,600 group homes in Japan, they
‘provide a particular model of care for elderly patients with intermediate-stage dementia, it is a modified form of
“reality orientation”. The method helps stimulate and activate the patients’ functions that are still alive by focusing
on reality and eventually it can guide them to regain a positive attitude as well as strengthening self-esteem. …
Elderly patients with dementia are often subject to stress. Animals could play an important role as stress relievers
because physical contact with them often brings back old and pleasant feelings. Music is also a great tool that
gives patients comfort and brings back good memories. The intact functions of the patients could be stimulated
using this excellent care method, which could result in less extensive use of diapers, sleeping pills and psychotropic
agents. The importance of the education and skill of staff members along with their understanding of the philosophy of care cannot be stressed enough’ (Hirakawa et al. 2006).
Since the late 1980s, there has been a rapid development of group homes for people with dementia in
Japan, especially after the introduction of the public long-term care insurance plan in 2000. The number reached
6,645 by the end of April 2005, according to the WAM NET nationwide online database (http://www.wam.go.jp/).
A group home is a small, home-style facility covered by public insurance. The law stipulates that each group home
must provide specialized, in-home care services with mutual support for the elderly with dementia. Thus, it assumes
the roles of both institution and home. Similarly, the number of elderly people choosing to spend their remaining
years in group homes has been increasing. Group homes should therefore be able to adequately respond to the
often demanding needs and complex wishes of individual users (Hirakawa 2006).
Hirakawa and colleagues examined the end-of-life care policies and practices of the group homes. The
informants were 3,701 managing directors. Data were collected through mailed, anonymous, self-reported questionnaires in 2003. The content of the questionnaires included: (1) general characteristics of the home, (2) end-oflife care policies and experiences, (3) available end-of-life care services at the home, (4) staff education concerning end-of-life care, and (5) types of information provided to users and families. The response rate was 45.6%.
Many group homes had implemented progressive policies for end-of-life care, but only a few group provided endof-life care training for the staff. Those with progressive policies for end-of-life care tended to have the following
characteristics: availability of medical intervention within and outside of the group home, self-contained physical
plant and staff education about end-of- life care. Key characteristics of the homes are shown in Table 5.
Table 5. General charactearistics of 1,689 group homes in Japan, 2003.
Characteristic
Number
Number of residents (average)
Per cent
13.1
Number of staff (average):
Certificated care worker/helper
4.6
38.0
3.3
Nurse
0.4
Physician
0.1
0.8
Domestic, admin, un-certificated
7.0
57.9
Total
12.1
100.0
Provider organisation
Non-profit
976
57.8
Incorporated social welfare institution
498
29.5
Incorporated medical institution
373
22.1
Others
105
6.2
For-profit
673
39.8
Others
32
1.9
Source: Adapted from Hirakawa et al. 2006 .
The group home model has been rapidly growing in recent years in Japan and Sweden and has been
adopted enthusiastically by non-profit and for-profit organisations and by medical and non-medical institutions.
Staffing levels are not particularly high for long-term care facilities, but a higher percentage than is normal are
trained specifically in dementia care. A great diversity of specialist services are provided, and many concentrate
on day care. A small number of group homes were affiliated with a hospital or with a geriatric intermediate care
facility at which limited medical services were available. Also, many group homes were self-contained physical
plants. Many companies and organisations are marketing group homes with great energy (see, for example the
webcasts advertising TTMed Dementia day-care centres which are supported by an unrestricted educational
grant from the pharmaceutical company Eisai at http://webcasts.prous.com/dccjapan/)
The medical interest in group homes in Japan has been focussed on how well they deliver end-of-life care
(including support for relatives). Although the broader aims of psychosocial care have informed the model, and
are emphasised on several promotional websites, the evaluations available suggest that even more staff training is
required for the principles to be fully implemented. Hirakawa and colleagues (2006) found that many group
homes have implemented progressive policies for end-of-life care, and that ‘the availability of medical interventions within or outside of group homes, self-contained physical plant, and staff education are associated with progressive policies for end-of-life care at group homes’. They also found a relationship between staff education and
group home policies, and argued that there is a need to develop effective educational programs for non-medical
20
professionals, such as group home staff, to promote essential knowledge and information regarding end-of-life
care.
The potential of telemedicine and assistive technologies
Earlier in the paper, it was emphasised that age-specific rates of disability have been falling in the United
States (and probably in other countries, but authoritative data is still lacking in most). Closer analysis of the trends
indicates that the rates of less severe disability, such as limitations in the instrumental activities of daily living (IADLs:
housework, cooking, shopping) have been falling faster than the prevalence of the more critical disabilities associated with the basic or physical activities of daily living (ADLs: self-care, eating, and toileting). It has been suggested that one reason for the differential is that new household technologies, such as microwave ovens, central
heating, electric washing machines, telephone and Internet banking and grocery ordering, assist more with IADLs
than ADLs. The important general point is that many, diverse technologies can help people be self-supporting and
make a contribution to increasing the quantity and quality of care and support, and not all are designated as
‘medical devices, aids or equipment’. A second insight is that it is rarely possible to anticipate which technologies
will be widely adopted and make the greatest contributions.
With this understanding, it is helpful to consider the potential roles of the latest new ‘assistive technologies’.
There are a great number and they are of many kinds. One of the most widely established in health and social
care are telephone alert services (sometimes marketed as ‘telecare’), which provide an easily activated, instant
response to an older person who has a health or other problem, as when they fall. Such systems provide reassurance to and are greatly valued by millions of frail and vulnerable older people worldwide who live alone, or whose
spouse is also frail. The technology was widely implemented more than 30 years ago. Many operational systems
could be considerably enhanced, but the provider companies have established customers and the incentive to
change is low.
True ‘telehealth’ or ‘telecare’ is more directly concerned with the management of a medical condition.
Devices can be established in the patient’s home to monitor vital signs, such as blood sugar, and this information
can be compared with acceptable low and high values. Other risk parameters can be incorporated, such as
fluctuations of heart rates. The information can be made available to the patient and to clinicians in remote locations, and either can make judgements about when further investigations should be made or an intervention is
required. Such systems may reduce the need for time-consuming and stressful clinic or out-patient visits, and theoretically the more continuous monitoring of a condition should lead to more responsive management and improved health and wellbeing. Experimental applications in the United Kingdom have not so far had great success.
One problem is the reluctance of primary and community care staff to work with the technologies. The reasons
are not entirely clear, but along with an element of technophobia, there are real concerns about job security. At
root, it is clear that policy makers and senior makers have shown a lack of awareness of the complexities of
‘innovation adoption’. The view has been that the key is to provide the funding to buy the new devices, when it
quickly became apparent that it is critical to provide the accompanying training, and to review and change job
descriptions and team configurations.
There are myriad other devices, many of which focus on the communication of information about the patient or their home to themselves and to family carers and formal carers. Falls detectors, flood detectors, movement monitors and automatic prompts to take medication or to turn off a tap are among the best known and
most widely installed devices. Audiovisual communication (video-telephoning) between carers and cared-for
persons who live apart is greatly valued for the reassurance, supervision and support it provides to both parties.
Ten years ago, many health and social care professionals reacted negatively to many new assistive technologies.
Frequently heard prognoses were that ‘remote communication’ would place face-to-face or human contacts
and lead to redundancies among care staff. Undoubtedly there will be particular circumstances in which this is
the case, but overall I believe that new technologies will be supportive of health and social care delivery and help
raise its quantity and quality.
Conclusions
The first response to population ageing of strategic policy makers and health and social care planners is
generally one of concern if not alarm. The prospect of a rapid increase in the requirement for treatment, support
and care, and the associated costs, is the headline issue. It is less often realised that improvements in longevity
reflect the improving health of the population at all ages, and that age-specific morbidity and disability rates tend
to fall in line with mortality. Of course there is a relentless expansion of medical knowledge, therapies and interventions, and this is raising the general public’s expectations of their physical wellbeing and care. But as this paper has
shown, there are several ways in which fresh thinking and new approaches can meet the challenge of improving
the quantity and quality of care. The clinical and organisational challenges are great, but we should also emphasise that there are exciting opportunities for innovation, for commercial and clinical enterprise, and for contributing
to the health and welfare of older people in our societies.
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_nota biográfica / biographical note
Tony Warnes is Professor of Social Gerontology at the University of Sheffield and latterly was Director of the
Sheffield Institute for Studies of Ageing. He is also Editor of Ageing and Society (Cambridge University Press), and
from 1994 to 2000 was Chair of the British Society of Gerontology, the UK association of social scientists with special
interests in studies of older people.
Tony’s research interests include the demography of ageing, the housing choices and circumstances of
older people, residential care, and homelessness. He has recently led an R&D and Knowledge Transfer ‘Advanced
Care Technologies Programme’, part-funded by European Union Regional Development Funds. This has been
investigating new applications of assistive and telecare technologies in the support of frail older people (see http://
www.actprogramme.org.uk/)
Tony has worked with numerous organisations of, and concerned with, older people, including the University of the Third Age in London, Age Concern England, Help the Aged (on studies of older homeless people),
HelpAge International and several housing associations. He is a Trustee of Sheffcare Ltd, a non-profit provider of
residential care homes in Sheffield.
_contactos / contacts
Sheffield Institute for Studies on Ageing
University of Sheffield, UK
E-mail: [email protected]
23
24
Envelhecimento activo
Prof. Doutora Constança Paúl
_resumo / abstract
Tendo como base o modelo de Envelhecimento Activo da Organização Mundial de Saúde (2002), que
assenta na saúde, participação e segurança das pessoas idosas, numa perspectiva de género e cultura, discutimos a importância dos factores psicológicos, como a personalidade, a capacidade cognitiva, a saúde mental e
as atitudes face ao envelhecimento, bem como dos factores sociais, como as redes sociais de apoio e a satisfação com os recursos e serviços da comunidade, nos resultados do envelhecimento.
Dá-se particular atenção aos aspectos passíveis de intervenção que se possam traduzir, a curto e médio
prazo, na optimização do processo do envelhecimento. Discute-se a aplicação do conceito de envelhecimento
activo em contextos comunitários e institucionais e reforça-se o seu sentido de prevenção em saúde física e mental das pessoas mais velhas, reforçando a sua relevância para o bem-estar psicológico.
_comunicação / paper
O conceito de envelhecimento activo, preconizado pela Organização Mundial de Saúde para a primeira
década do século XXI é a base de uma perspectiva positiva sobre o processo de envelhecimento que visa
mudanças nas atitudes da sociedade e na organização dos serviços e equipamentos, para a população mais
velha. Partimos dos dados conhecidos sobre a realidade Portuguesa, para seguidamente explorarmos com mais
detalhe este construto e as suas implicações, em termos de políticas sociais e de saúde para as pessoas idosas.
As projecções demográficas para Portugal (INE, 2009a) prevêem que a população com 65 ou mais anos duplique
nestes próximos 50 anos. Em 2008 havia 17.4% (116 pessoas idosas por 100 jovens) e em 2060 haverá 32.3% (271
pessoas idosas por 100 jovens). Para o aumento da população mais velha contribuirá sobretudo o grupo de 80 ou
mais anos que passará dos actuais 4.2% para 12.7%-15.8% em 2060. A actual esperança média de vida à nascença é de 75.4 anos para os homens e de 82 anos para as mulheres e projecta-se que aumente respectivamente
para 82.3 e 87.9 em 2060 ou seja um aumento de aproximadamente 5 anos, mantendo-se a diferença entre
géneros, desfavorável para os homens
No Inquérito Nacional de Saúde 2005/2006 (INE, 2009b) podemos verificar que a qualidade de vida é classificada por aproximadamente 50% das pessoas como ‘nem boa nem má’ havendo 40,9% de pessoas entre os 55
e os 64 anos que a consideram boa ou muito boa, percentagem essa que diminui para 35,3 % na década seguinte e para 29,8% nas pessoas de mais de 75 anos. A qualidade percebida de homens e mulheres é diferente em
aproximadamente 10 pontos percentuais inferior nas mulheres, em todos os grupos etários. Há alguma estabilidade na auto-percepção de saúde no grupo de pessoas que classifica a sua saúde como razoável - 40 a 50% da
população masculina ou feminina, mas há uma diminuição progressiva na percentagem de quem valoriza a sua
saúde como muito boa e boa que varia de 25% no grupo de 55-64 anos até 13% no grupo de 85+ anos. As diferenças entre homens e mulheres são muito evidentes sobretudo no grupo dos de 85+ anos em que há 21% de
homens a valorar a sua saúde como muito boa ou boa e apenas 9,5% das mulheres. Um indicador muito relevante é a constatação de que há sofrimento psicológico provável numa percentagem significativa da população
mais velha, sobretudo de mulheres idosas. As percentagens partem de 37.7% de pessoas entre os 55 e os 64 anos
para 40, 6% na década seguinte, 42,2% nas pessoas entre s 75 e os 84 anos baixando um pouco a partir dos 85
anos para 36,3%. As diferenças entre homens e mulheres são muito elevadas em prejuízo das mulheres que apresentam uma percentagem de aproximadamente mais 20 pontos percentuais.
Relativamente à saúde mental verificamos no mesmo relatório que há muitas pessoas a partir do meio da
vida a apresentarem sintomas de depressão (25%-35%), declínio cognitivo (+- 10%), uma auto-avaliação da saúde como fraca (+- 50%) com dificuldades em actividades instrumentais de vida diária (+-50% em pelo menos
uma) e muita co-morbilidade, mesmo em amostras a residir na comunidade.
As características da população idosa mostram dados preocupantes como a actual taxa de dependência quase duplicará em 2050 passando de 23% para 45%. O risco de pobreza dos idosos é maior – (29% são
pobres) sobretudo em zonas rurais - 33%, em relação às zonas urbanas - 16%. A pobreza em Portugal (in Complemento solidário para idosos 2006). É entre os idosos que o risco de pobreza é mais elevado e entre os idosos isolados que este assume maior dimensão. Em 2001, o risco global de pobreza após transferências sociais, era de 20%
no geral, de 30% entre os Idosos e entre os Idosos Isolados de 46%. Em Portugal existem cerca de 1 milhão de idosos com pensões inferiores a 300€, dos quais 30% se encontram em Risco de Pobreza (PNAI, 2006-2008).
Estes dados obrigam a uma reflexão aprofundada sobre as questões relacionadas com o envelhecimento populacional, a exigir respostas organizadas a nível social e de saúde e um planeamento rigoroso para integrar esta
nova realidade que nos trás a boa notícia de que vamos viver muitos mais anos mas nos confronta com a qualidade desses anos de vida também numa perspectiva individual.
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Saúde e bem-estar das pessoas mais velhas
A saúde e o bem-estar das pessoas passam pela prevenção da doença, um estilo de vida saudável,
numa perspectiva de curso de vida, que inclui a alimentação, o exercício físico e a ausência de comportamentos aditivos, a existência de um ambiente físico e humano adequado, por exemplo, contemplando o planeamento urbano consubstanciado em cidades amigas da pessoa idosa e preocupações mais genéricas de Ecologia
Humana. Estas preocupações com o ambiente físico e humano parte do princípio de que o comportamento
resulta da equação entre as características do individuo e do meio ambiente e que o espaço determina o comportamento, bem como, o comportamento se verifica num espaço, havendo um relação bidireccional complexa entre espaço e comportamentos individuais e interpessoais. Em situações de maior vulnerabilidade do indivíduo, como pode ser o caso da pessoa idosa, a pressão do meio torna-se maior e, pelo contrário a “docilidade do
meio” facilita o desempenho e compensa as hipotéticas dificuldades associadas ao envelhecimento.
Outra área relevante para o bem-estar refere-se ao exercício da cidadania, quer a nível da comunidade,
quer a nível da instituição, materializado no direito à palavra, ou seja, trazer as pessoas mais velhas para a construção das soluções e não reduzi-las ao papel de receptores de respostas, provavelmente pouco adaptadas às
suas necessidades e interesses.
Numa meta-análise realizada por Deep e Jest (2006) verificamos que em média há 1/3 de idosos, mesmos
dos muito idosos que são bem sucedidos. Os preditores desse sucesso são: serem idosos mais novos; não fumadores; sem incapacidade e sem artrite ou diabetes. Com menor peso aparecem variáveis como ter maior actividade física, mais contactos sociais, melhor auto-percepção de saúde, menos depressão, menos alterações cognitivas e menos condições médicas. Não se encontraram associações significativas com o género, o rendimento, a
educação ou o estado civil.
Através de outro tipo de metodologia tentou averiguar-se o que as pessoas relatavam como sendo importante para o envelhecimento bem sucedido. Um estudo de Fernandez-Ballesteros, et al (2010), mostra que o conceito popular de envelhecimento bem sucedido assume uma estrutura idêntica na Europa (Grécia, Portugal,
Espanha) e América Latina (Brasil, Chile, Colômbia, Cuba, Equador, México, Uruguai) e ao longo da idade. O
envelhecimento bem sucedido passa pela saúde, a independência e a participação psico-social e cognitiva. Os
itens mais importantes são “permanecer com boa saúde até à morte”, “ser capaz de cuidar de mim próprio”, “ter
família e amigos que me apoiem”, “sentir-me bem comigo próprio”. A longevidade não é importante assim como
ser capaz de trabalhar para além da idade da reforma.
Há unanimidade relativa ao papel da saúde num envelhecimento com sucesso e menos unanimidade relativa
ao peso de outros factores embora a maioria dos estudos apontem para a importância das relações sociais e de
uma boa saúde mental.
Envelhecimento Activo
Antes de avançarmos no conceito de envelhecimento activo vamos rever o que se entende por envelhecimento. O envelhecimento tem três componentes: a) o processo de envelhecimento biológico que resulta da
vulnerabilidade crescente e de uma maior probabilidade de morrer, a que se chama senescência, b) um envelhecimento social, relativo aos papéis sociais, apropriado às expectativas da sociedade para este nível etário e c)
o envelhecimento psicológico, definido pela auto-regulação do indivíduo no campo de forças, pelo tomar decisões e opções, adaptando-se ao processo de senescência e envelhecimento (Schroots e Birren, 1980). O crescimento e o envelhecimento nunca são o produto exclusivo de um único conjunto de determinantes, mas a consequência da nossa base filogenética, a nossa hereditariedade única, o meio físico e social no qual estas predisposições genéticas se exprimem e, no caso do homem, ainda o efeito do pensamento e escolha (Birren e Cunningham, 1985).
Situando-nos na área da Gerontologia Social, que estuda o impacto das condições sócio-culturais e
ambientais no processo de envelhecimento e na velhice, as consequências sociais desse processo e as acções
sociais que podem optimizar o processo de envelhecimento, adoptamos então a noção de Envelhecimento Activo definida na Conferência Mundial sobre o Envelhecimento (WHO, 2002). Este conceito define-se como um processo de optimização de oportunidades para a saúde, participação e segurança, no sentido de aumentar a
qualidade de vida durante o envelhecimento. Os conceitos-chave são: autonomia (controlo); independência
(nas AVD - Actividades de Vida Diária e nas AIVD - Actividades Instrumentais de Vida Diária); qualidade de vida e
expectativa de vida saudável. Os pilares que suportam este conceito são a participação social, a saúde e a
segurança e os determinantes, vistos sempre numa perspectiva de género e de cultura, são de ordem pessoal,
comportamental, económica, do meio físico, social e de saúde e serviços sociais.
A ideia é perceber o contributo dos diversos factores para um envelhecimento que noutros quadros de
referência vinha sendo designado de “Envelhecimento Óptimo” ou “Envelhecimento Bem Sucedido” (Baltes e
Baltes, 1990; Rowe e Kahn, 1998), no que estes conceitos tinham de maior dificuldade operativa na definição de
padrões de sucesso. Cremos contudo obter consenso no sentido de estabelecer como resultados desejáveis para
o processo de envelhecimento, seja a nível individual seja societário, a manutenção da autonomia senão física,
pelo menos psicológica e social do idoso, ou seja, a possibilidade de manter a capacidade de decisão e controlo sobre a sua vida, uma voz activa, em termos do seu meio próximo e da comunidade. Os conceitos abrangentes do tipo “guarda-chuva” como o de qualidade de vida, apontam para a necessidade de considerar os
aspectos valorizados pelos idosos para o bem-estar global como a saúde, mas também a satisfação de vida e
bem-estar psicológico, bem como a satisfação com o ambiente social e físico em que estão inseridos.
Referimo-nos sobretudo ao processo de envelhecimento primário, que aborda o processo normal e sem
doenças incapacitantes (Birren e Cunningham, 1985), e visamos explorar alguns dados teóricos e evidência empírica sobre a relação entre as redes sociais, nomeadamente do tipo familiar, com os resultados do envelhecimento seja em termos de saúde, seja em termos de bem-estar psicológico e participação social.
Num projecto que realizamos em Portugal com o objectivo de validar empiricamente o modelo de envelhecimento activo da OMS (DIA - Da Incapacidade à Actividade, POCTI/PSI/56505/2004), www.projectodia.com
26
verificou-se que o actual modelo da OMS baseado em 6 determinantes não foi validado empiricamente na sua
estrutura, tendo-se observado que o desafio do Envelhecimento Activo é a saúde e o funcionamento independente e que as variáveis psicológicas parecem muito relevantes na adaptação individual ao envelhecimento. De
novo, a saúde e a condição psicológica dos indivíduos a explicar o envelhecimento activo, sobrepondo-se a
aspectos biológicos, socioeconómicos ou ambientais.
Recomendações para um envelhecimento Activo
As intervenções para a promoção de um Envelhecimento Activo passam pela definição de uma política
para a Terceira Idade, em que exista dignidade de escolha, em que seja repensada a idade da reforma, mas em
simultâneo com os horários os perfis dos postos de trabalho a educação ao longo da vida, os serviços para as
pessoas mais velhas, entre outros. A área do Planeamento Territorial e Urbano é imprescindível ser revista em termos de acessibilidades, transportes e equipamentos. A participação cívica é outra área chave do envelhecimento activo e um campo de intervenção urgente para promoção da cidadania e o combate ao idadismo. Finalmente, mas não menos importante, a atenção às questões de Saúde, operacionalizando o conceito no âmbito
da Prevenção Primária e criando os serviços adequados no âmbito da assistência à doença crónica e de longa
duração (cuidados continuados), uma atenção clara no âmbito da saúde mental e das demências.
Coloca-se ainda a questão de sabermos se será possível falar em envelhecimento activo em pessoas institucionalizadas. Em nosso entender, o conceito de envelhecimento activo é sobretudo relativo à Prevenção em
Saúde e ao envelhecimento primário. No entanto, admitimos que há sempre uma margem de optimização do
processo de envelhecimento, seja qual for a trajectória de vida individual que mais não faz do que reflectir a
heterogeneidade do envelhecimento. Se aplicarmos os conceitos chave do envelhecimento activo às pessoas
idosas institucionalizadas, verificamos que estas terão perdido a sua independência - nas actividades de vida
diária e nas actividades instrumentais de vida diária – sendo provavelmente o que está na base da própria institucionalização; a expectativa de vida saudável - tempo de vida que se pode esperar viver com saúde - também
estará reduzida; podemos no entanto preservar a autonomia - controlo individual sobre a vida e a capacidade
inalienável de decisão - excepto nos casos de declínio cognitivo avançado ou incapacidade de comunicação
(situações para as quais é urgente melhor atenção jurídica) e aumentar a qualidade de vida destas pessoas, na
sua trajectória de vida específica. Haverá assim, em qualquer circunstância, algum contributo da implementação das directrizes da OMS para o Envelhecimento Activo que beneficiará as boas práticas relativas às pessoas
em Lar.
Com base no documento sobre Envelhecimento Activo da Rede Europeia de Luta Contra a Pobreza
(REAPN, 2010), em que também colaboramos, destacamos os seguintes aspectos por áreas.
Área Política: Política Transversal de Envelhecimento; Monitorização e Avaliação, quantitativa e qualitativa, das medidas e políticas actuais; Política de Família, com atenção especial às famílias de pessoas idosas ou
com um elemento idoso e às famílias multigeracionais; Estratégia Integrada de combate à pobreza das pessoas
idosas; Promoção dos mecanismos de apoio ao estado de bem-estar; Estratégia de Inclusão Activa com uma
atenção particular às pessoas idosas
Área da Formação/Informação/Sensibilização: Formação específica dirigida aos profissionais do sector;
Valorização e reconhecimento profissional; Suporte, Formação e Informação aos cuidadores informais; Complementaridade entre serviços formais e informais no apoio às pessoas idosas; Sensibilização da Sociedade em geral
para as questões da idade e das necessidades das pessoas idosas; Solidariedade Intergeracional.
Área das Instituições e Recursos Existentes: Política de Qualidade das respostas sociais; Trabalho em rede;
Flexibilização e Inovação dos serviços existentes de apoio às pessoas idosas; Activar a Participação das pessoas
idosas e criar espaço ao seu exercício; Empreendorismo Sénior; cidades amigas dos idosos.
Assim, recomendamos uma atenção privilegiada (i) à melhoria da qualidade de respostas existentes: ultrapassando a perspectiva assistencialista e adoptando uma perspectiva optimizadora (Envelhecimento Activo,
OMS, 2002); (ii) às questões jurídicas que se colocam nesta fase final da vida, nomeadamente relativas às famílias
que prestam cuidado a idosos dependentes, à situação de demência, ao testamento vital entre outras; (iii) ao
desenvolvimento de serviços especializados (ex. demência); (iv) ao desenvolvimento da Rede de Cuidados Continuados e (v) à mudança de atitudes face ao envelhecimento, com acções deliberadas para alterar os estereótipos negativos que legitimam más praticas em todas as áreas de serviços e relacionais, fomentando o contacto
entre gerações que pela primeira vez têm o privilégio de coexistirem e terem o tempo necessário para se amarem e apoiarem mutuamente.
Referências
Baltes, P.B. & Baltes, M.M. (1990) Successful ageing. Cambridge: Cambridge University Press.
Birren, J.; Cunningham, W., (1985), "Research on the psychology of aging: principles, concepts and theory", in J.
Birren e K. Shaie (Eds), Handbook of The Psychology of Aging, Van Nostrand Reinhold Company, N.Y., 3-34.
Deep, C. e Jeste, D. (2006). Definitions and Predictors of Successful Aging: A comprehensive review of larger quantitative studies. American Journal of Geriatric Psychiatry, 14(1), 6-20
Fernández-Ballesteros, R. (2000). Gerontología social. Una introducción in R. Fernández-Ballesteros (Dir.) Gerontología Social, Madrid: Pirámide. 31-54.
Fernandez-Ballesteros, R, Garcia, L. F. Abarca, D., Blanc, E., Efeklides, A., Moraitou, D. Kornfeld, R., Lerma, A. J.,
Mendoza-Numez, V. M., Mendoza-Ruvalcaba, N. M., Orosa, T. Paul, C., and Patricia, S. (2010). The concept of
27
‘ageing well’ in ten Latin American and European countries, Ageing & Society 30, 41–56.
INE, Instituto Nacional de Estatística (2002). O envelhecimento em Portugal. Lisboa: DECP / Serviço de estudos
sobre a população.
INE, Instituto Nacional de Estatística (2009a) Projecções de população residente em Portugal 2008-2060. Lisboa:
INE
INE, Instituto Nacional de Estatística e INSA, Instituto Nacional de Saúde Doutor Ricardo Jorge (2009b). Inquérito
Nacional de Saúde 2005/2006. Lisboa: INE/INSA
PNAI, Plano Nacional de Acção para a Inclusão 2006-2008 (www.pnai.pt)
REAPN, Rede Europeia de Luta contra a Pobreza (2009) Envelhecimento Activo, Mudar o presente para ganhar o
futuro, Redacção, 8. Porto: REAPN.
Rowe, J. e Kahn, R. (1998). Successful aging. New York: Pantheon
WHO (2002): Active Ageing: A policy framework. Geneva: Noncomrnunicable disease prevention and health promotion, aging and life course.
_nota biográfica / biographical note
Doutorada em Ciências Biomédicas, especialidade Psicologia pela Universidade do Porto e é actualmente Professora Catedrática de Psicologia no Instituto de Ciências Biomédicas Abel Salazar da Universidade do Porto, onde ensina Psicologia, Sociologia Médica e Gerontologia. Ocupa actualmente o cargo de Directora do
Departamento de Ciências do Comportamento do ICBAS e do Curso de Doutoramento em Gerontologia e
Geriatria da Universidade do Porto e Universidade de Aveiro.
Coordena a Unidade de Investigação Educação sobre Adultos e Idosos (UNIFAI/ICBAS-UP –
www.unifai.eu), responsável por uma organização de congressos e seminários, bem como de formação na área
do envelhecimento. Os seus interesses de investigação são a Gerontologia e a Psicossociologia da Saúde. Tem
sido a responsável de vários projectos de investigação nacionais e internacionais e orienta várias teses de mestrado e doutoramento. Publica regularmente livros e artigos em revistas científicas nacionais e internacionais.
_contactos / contacts
Instituto de Ciências Biomédicas Abel Salazar
Largo Prof. Abel Salazar, 2
4099-003 Porto, Portugal
Tel: +351 222 062 200
28
Responding to dependency in old age.
Prof. Doutor Philippe Pitaud
_comunicação / paper
In our modern societies, while at the same time ageing starts to be a data integrated into our modes of
social management of the population, it is the dependency which is registered like a new problem concerning
mainly the eldest. Datas are very clear since men, but especially women are already 2% over 85 years, an age
highly concerned by dependency.
The term of assumption of responsibility is, from now, on the agenda, and the reception facilities, the home
keeping, the development of nearby help as a training course for the future staff and volunteers involved.
Dependency is defined as the need for assistance to achieve the elementary acts of life. It is the duality
between incapacity/need for a help which melts the concept of dependency and not the strict incapacity. Dependency should not then be regarded as a fixed stage. We can speak about a process which is supposed to be
accompanied, modified in its evolution, to be prevented and reduced in its expression by an adapted environment and services.
Dependency as a loss of autonomy; one will note that for better apprehending this kind of situation, one will
consider that a deterioration of the performances concerning a small number of fundamental size of the human
behaviour, called “roles of survivals” indicates a situation of disadvantage. Two principal aspects can be used to
locate the disabled population. On the one hand, we can find containment (i.e. physical mobility) and on the
other hand, dependency of another person for the acts of everyday life. Those include feeding oneself, having a
wash, as well as moving around on one's own. One will add the capacity to achieve the various activities concerned with domestic management (buying, household, preparation of meals, holding one's budget...) like those
contributing to make the person a participant of the economical and social environment (necessary steps with
public services...).
For the achievement of these various acts essential to the home keeping; the dependent person will call
upon solidarity in the diversity of its expressions.
Debates about the management of dependency as experiments are currently in hand of those who raise
the
question
of
assistance
provided
by
family’s
network
or
by
neighbours
or
friends.
On this theme, various research realised in Europe show, in a very clear way, that users of domestic assistance or
nursingcare at home have almost always a network of assistance, whereas people living in institution are only very
few in this situation.
By network, one understands the existence near the old person of people in capacity to help him daily
(meal, moving around, administrative steps) or very regularly i.e. as much as needed.
Thus research-works carried out by Social Gerontological Institute in Marseilles (University of Provence)
indicate that 89% of people not benefiting from services, have around them a natural network of solidarity (family,
neighbourhood) which intervenes either very regularly, or less often but according to the needs. In such a context
and even if help is not massive, there is always an attentive and vigilant presence.
In addition, one will recall that many old people live since years in their current housing and have developed a number of social relations.
In this way, we should like to speak about solidarities and family from conceptual and practical considerations.
The development of European society over the last fourty years of growth, following the second world war,
has brought a whole series of transformations in life styles and thereby in the interaction and the issues at stake
between the various social groups which make up the social structure of our immediate world (family, work,
neighbourhood...).
This development is particularly evident in the family, with regards to the influence of various parameters
(women going out to work, increased average life expectancy, lower birth rate, changes in attitudes to leisure
time...) on its form and functionning.
During this period of time, many common social functions which had previously been left either wholly or
partially to private initiative and to local solidarity were gradually taken over on massive scale by large centralized
public or semi-public institutions with the local authorities or the State (Welfare State).
But since the 70’s, due to the economic crisis which appeared as more as a structural problem of European
systems, we met the limits of this Welfare State and we began to re-consider with more interest, natural solidarities
which have deeply survive in South Europe and in Mediterranean region as its belongs to a common cultural basis
and way of living.
About solidarity, I should like to record that everyone lives on scaled down mutual dependences, the majority of which are lived in the manner of solidarity meant as a reciprocal dependence. This relationship can then
be contemplated from a point of view of equality, where each party exchanges with the other the things they
need.
In the idea of solidarity there is the idea of exchanges. In his essay on Giving, MAUSS (1966) strictly defines
the link between giving and exchange “by the triple obligation of giving, receiving and giving back”... MAUSS
shows that by this triple obligation “close relationship are formed between donors and beneficiaries and the impor29
tance of relations of reciprocity, of giving and counter-giving in the maintenance of the social link...if there is no
exchange, the group breaks up”.
More specifically, solidarity may be experienced on two levels:
a) the inter-individual level where the solidarity will be qualified by such words as spontaneous, infor
mal;
b) the collective and organised level, in the sense that citizens will agree or refuse to back this na
tional policy directed at a socio-economically disadvantaged group, considered at risk or incapa
ble of being self-sufficient.
These, this will be called, mechanical, formal solidarity or again national solidarity.
We talked about informal solidarity. The family may be considered here as the place where this is put into
practice, whilst not forgetting that the same applies to the wider local community, such as the neighbourhood. the
family is thus the best illustration of a group within which a solidarity is put into practice.
Family is probably the first place where solidarity is practised. Indeed, despite the pessimistic developments
affecting the family unit, the family continues to be regarded as the natural source of support for their members in
the ordinary course of their existence or when they get into difficulty arising as a consequence of marriage.
In fact, the family value continues to appear at the top of the list of values essential to life, in all recent surveys.
This is all the more interesting since the structure of the family has resisted all the upheavals of change, constituting notwithstanding all its transformations, an indisputable stabilising element in the overall uncertainty of modern life.
To go back to the specific sphere of assistance and care for the elderly, it will be admitted that in south
Europe, it is first and foremost to the family and neighbours that the elderly turn when they need support.
Family practices have to be taken into account and professional help cannot ignore them. They are catalysts and essential backups to the action of home care professionals.
Caring in the home is the result of the active mobilisation of friends and relations, no less than it is of the
wishes of older people themselves and of the support which institution can give.
In this more specific concern more specifically, (Mediterranean area) and according to FACCHINI ‘s research works (1993), hypotheses have been made for a long time about the growing solitude of elderly people
(PITAUD-2005), and what amounts to their “dumping” by their families.
In recent years however various research studies have strongly modified this view, which by now
seems above all a “commonplace”. Although they may live alone, elderly people generally seem to be a part of
the networks of solidarity and family interaction.
In Mediterranean area and especially in southern Europe, this inclusion seems even more marked than in
any other industrialized countries of Northern Europe and North America. (PITAUD – 2005 and 2006).
We have to record here that “a first important datum to be underlined is that only about 3 to 4 % of elderly
live in institutions; this datum is even more significant if it is considered that this level is basically identical to that
recorded in the 50’s, despite the appearance of two factors which ought to have induced an increase.
The first factor is that also in countries of southern Europe, the aging process recorded in this century has been
characterized by a specific increase of “aged personae”, that is people over 75 years, who are more exposed to
the risks of deterioration of their psycho-physical conditions and reduced self-sufficiency, and thus more exposed
to the necessity of being institutionalized.
The second factor lies in the strong change in family typologies. In the 50’s, extended families (those in
which, apart from the nucleus of the married couple and children, there also lived their relations such as grand
parents, aunts and uncles, etc...) made up 20 % of all families, whereas today they are now more that 20 %.
Concerning this, it must be underlined that the majority of these nuclei is composed of elderly people and specifically by women : more than half of single units are elderly women, often widows.
Therefore, despite what may be defined as the aging of the elderly population and despite the fact that
the process of nuclearization taking place in Mediterranean families has resulted in the majority of elderly people
living alone (either as singles or making up an elderly couple), no strong movement towards use of institutions or
residential structures has taken place.
The great majority of elderly people continue to live in their own home or in that of their family.”
In this way we have to speak of a strong hold of the role of the family.
The family, or rather the membership family of the elderly people are the fundamental structure for support
in care and help forming in fact the most consistent barrier against institutionalization.
“If compared to the past, therefore, family support has not failed, two basic changes however have taken place
which have important repercussions on the personal characteristics of the people involved in the caring relation.
the first change may be synthesized which the expression of “verticalization” of these relations, the second
with their “feminization”.
The first new aspect, the verticalization of relations, is a consequence of the demographic changes recorded during the twentieth century. There are two elements which we are concerned with emphasizing here: the
first is the decrease of the number of siblings - brothers and sisters; the second by the lengthening of the average
life-span and by the consequent co-presence, on the family scene of several generations (if three generations are
now normal, there are also frequent cases of four, there are, moreover, although very rare, even cases of five generations).
This is to say that in the past, in the extended family with which relationship were kept up, it was possible to
count for help and solidarity, made up of brothers and sisters and by their new families, whereas nowadays the
extended family with whom affectively significant relations are kept up and within which help and support is exchanged is increasingly constituted by different generations who do not live together.
30
With a play of words, we may say that whereas in the past it was a “large” family, now the extended family
is “long”. And it is this lengthening which reminds us of the term we have used, “verticalization” of the family and
of the network of affections and support connected with it.
But this verticalization has an important corollary concerning the persons involved in the caring relation :
those receiving help tend to be increasingly “very” aged persons over 80 years - in their function of parents, the
persons who give help tend to be people of 50-60 years, in their function of “children”.
At the same time, it must be pointed out that, since in the past more sons and daughters existed, having to
look after their parents involved only a number of sons and daughters; (one out of four or five, the others were in
various ways exempted).
At present time, however, the smaller number of offspring means that almost all children have to look after
their parents or parents in law.
The second aspect to be pointed out concerns the “feminization” of the caring relation.
There's no doubt that, women have always been central in the relationship network and in the caring relation, in our countries at least.
As a consequence of division of tasks and roles within the family, they have historically been entrusted with
the tasks of support and assistance. However, it may be argued that today a feminization of the persons cared for
changes into a further feminization of the carers.
As FACCHINI (1994) says, first and foremost, we speak of feminization of persons cared for in that, in all westerns countries, women on average live several years longer than men: consequently among elderly people,
women are much more numerous than men. Secondly there are specifically female pathologies, such as arthrosis,
arthritis, osteoporosis, which tend to limit or make difficult the movements of the persons affected and often involve
the need for some kind of support.”
This brings us back, of course, to services and their continuity, to families in their demand (or not) for services
and/or the recruitment of a third person and in order to satisfy needs generated by the appearance of dependency with oldest age. (PITAUD, DHERBEY – 1996, PITAUD 1995)
In a wider context, we should like to add that, today it is necessary to develop a partnership between all
the formal and informal actors in the field of solidarity.
This requires a change in attitudes and education in solidarity which is the key to the problem
(GUILLEMARD- 1986).
Faced with the need to limit the growth of its expenditures, the state in modern or developed countries,
continues to diversify the ways in which it intervenes.
For this purpose it develops various forms of mixed economy and delegates public service role to private
agents. Thus, in term of local economic development, contractual procedures and partnership play an increasingly important part.
In this dynamic of state disengagement, we perceive a willingness to reduce costs starting from the idea of
a civil society which would take wider responsibility for its own members, with, in the background, an idea of substitution. Here civil society refers to anything which is not organised by public authority.
This raises the central problem of dialogue and indeed interaction between the formal and informal sectors
in the support and care of the elderly.
Moreover, we have to consider the exchanges between two references, one from Northern or Anglo-Saxon
societies and one from Southern countries.
We have, here, to take into consideration each cultural specificity which defines and structures the relationship of each human being to his environment. (MONTANDON, PITAUD – 2006)
In this dynamic of finding the best way between Home and Institution, we have to consider solidarity as a
result of a philosophy of life, a way of living our World which enable us to give meaning to our life. (PITAUD – 2007)
The family and neighbourhood as resource are one way of preparing the future of our societies.
This implies new forms of help to helpers and in this sector many have to be done especially in southern
Europe and Mediterranean area.
Some Publishing references of the author in France and abroad
“Informal care in Europe : the debate on solidarities : towards an articulation between formal and informal sec
tors”- (pp. 89-108), ed. the University of York, 1993, 296 p.
Sous la direction de PITAUD Ph. "Vieillir dans les villes de l'Europe du Sud", Toulouse : Editions Erès, 1994, 208 pages.
(contribution du Pr. FACCHINI C).
"Preventive medico-social care and research at the Institute of Social Gerontology of Marseille". In : AGE VAULT, an
INIA COLLABORATING NETWORK ANTHOLOGY - United Nations- Malta, 1995 - 252 p.
"New benefits system in France" In : Creative care at home : exchanging the European experience. St Andrew Fife regional council - 1995 - 118 p.
PITAUD Ph. with DHERBEY B.. "La dépendance des personnes âgées : des services aux personnes aux gisements
d'emploi". Toulouse : Ed. Erès 1996 - 174 pages.
« Contributo para uma abordagem das politicas de velhice no seio da união europeia » in Futurando, teorias e
praticas – n° ¾ Dezembro 2001, Lisbonne, pp 3-10. PITAUD (Ph).
31
« Solitude et isolement des personnes âgées ; l’environnement solidaire » Ed ERES – pratiques du champ social –
Toulouse – 2004 – 268 p., PITAUD (Ph) ( sous la direction de )
« Prévenir l’isolement des personnes âgées ; voisiner au grand âge » - ed. Dunod, coll Action sociale, Paris, 2004,
183 pages. ARGOUD (D) (Dir), PENNEC (S), LE BORGNE-UGUEN (F), MANTOVANI (J), PITAUD Ph, REDONNET
(M)
« O sentido das idades da vida ; interrogar a solidão e a dependência » - ed. Cesdet, Lisbonne, 2004, 206 pages.
QUARESMA (M. de L.) (Dir), PITAUD (Ph) coordinateur, « Solitude des âges, solitude de l’âge »,(121-172) –
PITAUD (Ph), REDONNET (M)
« Acerca dos laços sociais. Reflexão sobre o isolamento e solidão entre os idosos » in Futurando, sujeito e projecto
de vida, n° 11/12/13, Dezembro 2004, Lisbonne, pp45-57, PITAUD (Ph)
« Les migrants âgés et les solidarités dans le cadre du maintien à domicile accès aux services » in vieillir en France,
Gunter Narr Tübingen, 29 janvier 2004, n°116 142 p, pp70-78, PITAUD (Ph)
« Older immigrants in France – a medical and a social approach of exclusion » in Generations Review – Journal of
the British Society of Gerontology. Volume 14 – n°3 – July 2004 – (pp20-22), PITAUD (Ph)
« Vieillir en Exil » - Presses universitaires Blaise Pascal – 2006 – 210 pages – MONTANDON (A), PITAUD (Ph) (sous la
direction de)
« Exclusion, maladie d’Alzheimer et troubles apparentés : le vécu des aidants » éditions ERES, collection pratiques
du champ social, Toulouse, 2006, 315 pages, sous la direction de Ph PITAUD
« Insegnare la gerontologia sociale : obiettivo europeo » in I Luoghi della cura – Revue de la société italienne de
Gérontologie et Gériatrie – Anno IV – N° 3 – septembre 2006 – FACCHINI (C) et PITAUD (Ph)
« Bien vieillir ; 100 ans et plus ? » éditions ERES, collection pratiques du champ social, Toulouse, 2007, 203 Pages, Ph
PITAUD et collaborateurs.
« Pessoas com doença de Alzheimer e suas familias ; perspectivas e análises Portugal, Espanha, França e Itália »
Lisbonne, Universidade Lusíada et Instituto Superior de Serviço Social, de Lisboa, 2007, 229 pages
« Le vécu des aidants et des malades : de l’exclusion à la reconstruction du lien social » pp143-155 PITAUD (Ph),
VALARCHER (C) – « Regards croisés sur les pratiques et représentations des professionnels face à la maladie
d’Alzheimer »
_nota biográfica / biographical note
Doctor in Health Sociology, Professor at the University of Provence in Marseilles (France), Director of the
higher specialised Diploma courses (professional Ph.D.) entitled “ MASTER of Gerontological Action and Social Engineering”.
He is also Director of the Institute of Social Gerontology since 1990. The objectives of the institute are: Preventive Medical and social care through medical assessments on a yearly basis and free of charge in respect of
persons above 60 years of age, pensioners and persons on early retirement and persons of 50 years and above
living in marginal conditions including old migrants - Dissemination of information and education in health issues
trough training courses, seminars, publications, conferences, hand-outs and guidance - Research and Study.
_contactos / contacts
Université de Provence (MASTER AGIS)
Tel.(33) 4 91 10 67 56
Fax. (33) 4 91 10 62 85
E-Mail: [email protected]
Institut de Gerontologie Sociale
Tel. (33) 4 91 37 03 79
Fax. (33) 4 91 37 19 73
E-Mail: [email protected]
32
II. Notas biográficas, Resumos e Comunicações
Prof. Doutora Amália Botelho
Moderadora “Abordagem Bio-Neurológica ao Envelhecimento”
_nota biográfica / biographical note
Médica, Especialista em Medicina Interna e Professora Auxiliar da Faculdade de Ciências Médicas, onde é
Subdirectora desde Agosto de 2007.
Exerce actividades de docência e investigação em Gerontologia e Geriatria e co-coordena e lecciona
no Mestrado em Saúde e Envelhecimento, tendo recebido uma Menção Honrosa do Prémio Bial 2000 nessa área
de conhecimento.
Desenvolveu metodologia padronizada de avaliação biopsicossocial, que constitui o instrumento de rastreio para dependência funcional da Rede Nacional de Cuidados Continuados Integrados.
Tem particular empenho na formação em Gerontologia e Geriatria de futuros médicos e outros profissionais ligados à saúde e assistência, assim como na avaliação diagnóstica e promoção da auto-suficiência dos
indivíduos no decurso do seu envelhecimento.
_contactos / contacts
Faculdade de Ciências Médicas
Universidade Nova de Lisboa (FCM, UNL)
Campo dos Mártires da Pátria, nº. 130
1169-056 Lisboa, Portugal
Tel: +351 218 803 000
Fax: +351 218 851 920
33
34
Geriatria e Envelhecimento Saudável
Prof. Doutor Alexandre Castro Caldas
_resumo / abstract
O envelhecimento implica o risco crescente de doença. São de particular importância as doenças que
afectam o sistema nervoso, perturbando quer as funções cognitivas, quer as funções motoras. É fundamental que
quem cuida de indivíduos de idade mais avançada compreenda as fronteiras entre o normal e o patológico, e
que seja capaz de criar planos de intervenção que importam para o envelhecimento normal e planos terapêuticos que respeitem às doenças mais frequentes nestas idades.
A Sociedade tem vindo a identificar este problema de fronteira com uma oportunidade de negócio e
muito se tem proposto, que carece da verificação necessária. Pretende-se nesta comunicação chamar à atenção para os principais problemas e rever o que se considera de real valia em matéria de intervenção.
_comunicação / paper
O corpo humano está em constante renovação ao longo da vida. Os elementos básicos da sua constituição multiplicam-se e destroem-se em ciclos diferentes consoante os tecidos e sistemas. A grande maioria das
vezes esses ciclos são pautados pela instrução genética inaugural, mas muitas vezes são o resultado de uma
estratégia adaptativa às noxas externas capazes de agredir e alterar o desenvolvimento normal do processo
fisiológico natural.
A medicina humana tem-se focado no problema da saúde das idades mais avançadas, tentando minorar
os efeitos destes processos sobre a funcionalidade e, consequentemente, sobre a qualidade de vida.
Os genes e o envelhecimento natural
Nos últimos anos têm-se vindo a criar técnicas seguras e rápidas de identificação dos genes e tem-se refinado a metodologia de os correlacionar com eventos vitais dos indivíduos. Cada vez mais entidades clínicas são
reconhecidas como resultantes de uma marcação predeterminada e, pode dizer-se que não haverá constituição genética óptima pois essa seria a da imortalidade com qualidade até a um limite máximo ainda não conhecido. Existe, pois, sempre imperfeição expressa na anamenese da vida de cada um.
Há doenças que se tornam evidentes tarde na vida porque assim estava previamente determinado. Em
alguns casos as relações com as alterações genéticas são seguras, como por exemplo no caso da doença de
Huntington (ver Bates, 2005). Esta doença do sistema nervoso é reconhecida como familiar desde há muitos anos
sendo identificada como de hereditariedade dominante na perspectiva mendeliana Os primeiros sinais da doença podem revelar-se depois dos 50 anos e interessam a motricidade e a capacidade cognitiva. Os doentes
desenvolvem um quadro de movimentos involuntários, que se assemelham a uma dança, que evoluem desde as
manifestações mínimas nos movimentos da face ou das mãos até à incapacidade completa de movimentos
proposicionais. Do ponto de vista da cognição, a perturbação da memória configura o sinal inaugural, progredindo depois para a perda generalizada de funções. Os exames de imagem cerebral permitem o diagnóstico, sendo evidente a atrofia do córtex cerebral e a atrofia da cabeça do núcleo caudado. A alteração genética foi
identificada em 1983 no cromossoma 48. O progresso registado na genética molecular ao longo dos anos permitiu refinar a descrição deste problema caminhando hoje para técnicas de tratamento por engenharia genética.
Outras doenças mais frequentes como a doença de Parkinson e a doença de Alzheimer têm vindo a correlacionar-se com múltiplas alterações pelo que a relação directa entre a genética e a clínica só está provada
num número restrito de casos. (ver Thomas e Beal, 2007; Brouwers et al., 2008 ).
Deixemos, por ora, de lado as doenças que aparecem na idade mais avançada e detenhamo-nos no
processo de envelhecimento considerado normal. Contra as doenças há que encontrar soluções no domínio das
ciências médicas, o que felizmente, tem vindo a verificar-se, interessa-nos, então, discutir a forma de preservar o
corpo e a mente pela adopção de comportamentos apropriados. Importa dizer que não se trata de comportamentos apropriados para evitar as doenças de que falamos acima, tanto quanto sabemos hoje elas são inevitáveis, são comportamentos que permitem tirar o máximo proveito da função normal do cérebro.
Começo por falar do caso do Sr. X (não posso revelar a identidade mas trata-se de um caso real) que um
dia me procurou na consulta. Tinha 96 anos era proprietário e gerente de três lojas em Lisboa, lojas essas que visitava diariamente fazendo o encerramento das contas. A razão da consulta era a solicitação de uma segunda
opinião, solicitação essa que foi posta nos seguintes termos, depois de descrever a sua actividade diária: “nunca
estive doente, por isso nunca tomei nenhum remédio, faço análises regularmente estando tudo sempre normal e
o meu médico de família nunca viu necessidade de me prescrever qualquer medicamento, porém, este meu
médico reformou-se e tenho agora um novo que na primeira vez que falámos me sugeriu que tomasse este medicamento”. Tratava-se de uma daquelas moléculas que promete combater o envelhecimento, mas cuja eficácia
não se encontra provada. Independentemente do facto de ter sido minha opinião que não tomasse aquele
“remédio” importa salientar que este senhor é um exemplo do que a natureza preparou para a espécie humana,
isto é, quem não estiver assim com 96 anos é porque alguma coisa aconteceu que o impediu. Umas dessas coi35
sas, como vimos, são erros da própria natureza, outras são resultado da má utilização que fazemos do corpo e
dos recursos que a natureza disponibiliza, outras ainda são próprias do processo de envelhecimento que invariavelmente tem que conduzir à morte. Não podemos fugir a esta determinação, nem tampouco devemos fantasiar
que é possível fazê-lo. Na verdade o Sr. X tinha o cabelo branco e ralo, rugas na pele da face e das mãos, usava
óculos para ler e movimentava-se um pouco mais devagar – estou certo de que não conseguiria saltar ao eixo.
O exemplo que acabámos de relatar deve constituir o nosso objectivo. É certo que podemos contrariar
um pouco aquilo que a natureza vem fazendo ao nosso corpo e o Sr. X usava óculos para ler; não era o caso,
mas podia também usar uma prótese auditiva – sabemos que os tecidos dos órgãos dos sentidos vão perdendo a
sua eficiência. A própria sensibilidade proveniente dos axónios mais compridos dos membros inferiores começa a
diminuir obrigando a uma adaptação cautelosa da marcha e a bengala pode ser um recurso para dar confiança. Os ossos ficam mais frágeis, os músculos ganham gordura, os discos intervertebrais perdem elasticidade e
volume e por isso se altera a postura e reduz a altura do corpo.
Contrariar o que a natureza determina pode ter os seus inconvenientes e as medidas tomadas nesse sentido devem ser analisadas com cautela, muitas vezes o risco é superior ao benefício. É claro que é necessário
medir ambos com rigor porque, por vezes, há efeitos que passam despercebidos numa análise superficial mas
que podem ter a sua importância para a qualidade de vida. Como já foi dito, a pele ganha rugas perdendo a
elasticidade, mas será isto uma razão para esconder este processo evolutivo. Para que se compreendam os tais
efeitos menores vale a pena, a propósito das intervenções que se fazem para corrigir as rugas da expressão
facial, relatar um resultado recentemente publicado. Foi pedido a pessoas que tinham sido submetidas a tratamento com toxina botulínica (Botox) para correcção de rugas de expressão facial para ler textos de conteúdo
emocional. O desempenho deste grupo foi comparado com outro de iguais características no que respeita às
variáveis socioculturais à idade e ao género que não tinha feito qualquer tratamento. Os resultados são muito
curiosos: o grupo tratado com Botox teve mais dificuldade em descodificar a mensagem emocional dos textos
(Havas et al. 2010). Isto significa que o corpo reage à informação emocional com uma expressão fácil que tem
que ser lida para consolidar a compreensão consciente do sentimento. Pode ser que os próprios não achem isto
importante mas é preciso que se saiba. Naturalmente, não valerá a pena falar das situações extremas de mudança do corpo reflexão que, de certo, nos conduziria a considerações de natureza ética que não importam no
presente texto.
Medidas para envelhecer com saúde
Tem havido grande discussão à volta destas questões em todos os países. Na Europa criaram-se grupos de
trabalho e comissões múltiplas tendo sido produzidos inúmeros textos que hoje estão facilmente acessíveis na
internet (ver por exemplo Healthy Ageing: a challenge for Europe). Vale então a pena rever de forma breve algumas das medidas que têm sido apontadas como de valia para que se tenha saúde na última etapa da vida.
A primeira medida diz respeito a uma das transições mais penosas da vida: a reforma. De facto, é necessário que esta etapa seja bem planeada para não surgir uma mudança abrupta no ritmo da vida. O cérebro é
um órgão que se adapta às condições de vida, mas essa plasticidade vai-se perdendo com a idade e as transições bruscas das rotinas na fase mais adiantada da vida podem dar origem a rupturas complexas, organizadas
muitas vezes em síndromes depressivos. Seria bom que nos locais de trabalho houvesse o cuidado de preparar a
reforma dos trabalhadores. Quando um trabalhador adquire experiência, ao longo dos anos de trabalho, seria
bom que essa experiência, no contexto ainda de trabalho activo, fosse utilizada no sentido de promover a autoestima, e simultaneamente, fosse estimulada a ligação a outras actividades que lhe permita ter alguma continuidade depois de deixar a rotina do trabalho. Compreende-se que é difícil isto acontecer nos constrangimentos
habituais do mundo do trabalho, mas considera-se que se deveria seguir nesse sentido.
Uma das actividades em que os trabalhadores no processo de reforma poderão ser integrados são as de
voluntariado no seio das comunidades. Cada vez mais se verifica uma razoável expectativa de vida com saúde
na idade da reforma, e cada vez mais se regista maior dependência dos indivíduos de maior idade no fim das
suas vidas. Há então uma janela de oportunidades na ligação do interesse de quem necessita de ajuda com o
interesse de quem necessita de actividade.
Naturalmente todo este processo carece de apoio por parte dos cuidados de saúde em particular no que
respeita à incidência de doenças próprias destas idades. A depressão e as doenças degenerativas têm que ser
avaliadas com cuidado sendo, por isso, necessário treinar os cuidadores nestes domínios.
Se se considera que os reformados se devem empenhar nas comunidades também a comunidade se
deve preocupar com eles. Os espaços urbanos e as cidades em geral, são agressivas e pouco seguras para
aqueles que necessitam de maior cuidado. Tem havido esforços por todo o mundo no sentido de melhorar estes
aspectos mas estamos longe de ter o problema resolvido. É necessário que movimentos de reformados façam
pressão junto das Câmaras Municipais e das Juntas de Freguesia para melhorar os seus espaços.
Na discussão de qualquer questão relacionada com a saúde não pode deixar-se de falar nos alimentos e
na alimentação em geral. As situações de algum isolamento e dependência têm um reflexo imediato sobre o
regímen alimentar. Há tendência a simplificar e a recorrer a produtos já confeccionados. Com frequência não
são respeitadas as regras de segurança quer de prazos quer de conservação no frio e os problemas são frequentes. Não vamos discutir a fundo a questão da dieta mas tão somente referir que há que dar preferência aos
vegetais, às fibras e que reduzir as gorduras saturadas fazendo diariamente uma só refeição que inclua carne ou
peixe que deve ser o almoço, sendo as outras mais leves distribuídas ao longo do dia pelo menos o pequeno
almoço, o lanche e o jantar.
A actividade física é outra das recomendações que importa fazer. De facto, está provado que o exercício
físico bem equilibrado é um factor que contribui para a boa saúde física e mental. É importante salientar que há
que ter cuidados particulares na selecção do exercício mais adequado para cada um. O que a literatura
demonstrou como importante foi a prática de 30 minutos de marcha por dia, mas pode naturalmente este exercí36
cio ser substituído por outro equivalente. Deve salientar-se que na idade mais avançada o exercício físico deve
ser acompanhado por profissionais que conheçam bem os riscos para o organismo de uma prática mal orientada.
O último ponto a considerar tem a ver com o consumo de substâncias potencialmente nocivas e com o
uso de fármacos. Quanto às primeiras importa dizer que, com excepção do vinho em doses moderadas (em
geral considera-se um copo de vinho por dia) todas as outras substâncias devem ser evitadas. O tabaco, naturalmente pelos riscos múltiplos que tem, deve ser evitado sempre. Regista-se, contudo, no nosso país aumento do
consumo pelas mulheres, havendo uma redução nos homens. O café pode ser bem tolerado, mas em particular
a partir dos 50 anos de idade pode interferir na qualidade do sono e por isso deve ser evitado à noite. Quanto a
outros estimulantes, devem naturalmente ser evitados.
Quanto aos remédios há que ter cuidados particulares. Em primeiro lugar é frequente a diminuição da
memória recente e o remédio pode ser esquecido ou ser tomado duas vezes. Em segundo lugar a polimedicação é, infelizmente, uma realidade nas idades mais avançadas. Muitas vezes as pessoas procuram vários médicos
e associam as prescrições, sem dar conhecimento a ninguém, podendo tomar vários fármacos com a mesma
indicação. Acresce a esta dificuldade a existência de genéricos com embalagens diferentes e as cópias dos
medicamentos, sendo possível que a mesma pessoa esteja a tomar a mesma molécula no dobro da dose porque
considera serem fármacos diferentes. O apoio às pessoas nesta fase da vida implica, por isso, uma atenção enorme a este problema que está presente em todas as pessoas, excepto nos raros casos, como o Sr. X de que falei
no inicio deste texto.
Merece atenção particular ainda o facto de não ser simples corrigir muitas vezes uma receita. A associação de múltiplos fármacos altera naturalmente a biodisponibilidade de cada um. Imagine-se que um doente
toma um hipotensor no conjunto dos outros dez ou quinze fármacos e que alguém resolve suspender todos os
fármacos menos aquele que acha importante para corrigir a hipertensão. O resultado pode ser dramático pela
súbita alteração da biodisponibilidade, podendo o doente fazer uma hipotensão grave.
Podemos então concluir que é possível chegar a uma idade avançada com qualidade de vida se a natureza permitir, não trazendo doenças, e se nós próprios conseguirmos tratar do nosso corpo e da nossa mente de
forma equilibrada.
Referências
Bates, G. P., The molecular genetics of Huntington disease – a history. Nature Reviews - Genetics, 6: 766-733 (2005)
Brouwers, N., Sleegers, K.& Van Broeckhoven, C., Molecular genetics of Alzheimers’s disease: An update. Annals of
Medicine, 40:562-583 (2008)
Havas, D.A.,Glenberg, A.M, Gutowski, K.A., Lucarelli, M.J., Davidson; R.J., Cosmetic use of Botulinum Toxin-A affects
processing of emotional language. Psychological Science, 21: 895-900 (2010)
Thomas, B. & Beal, M.F., Parkinson´s disease. Human Molecular Genetics, 16, Review Issue 2: R183-R194 (2007)
Healthy Ageing: a challenge for Europe: www.fhi.se/en/Publications/All-publications-in-english/Healthy-Ageing--aChallenge-for-Europe
_nota biográfica / biographical note
Actual Director do Instituto de Ciências da Saúde da Universidade Católica Portuguesa, foi até Fevereiro
de 2004, Professor Catedrático de Neurologia na Faculdade de Medicina de Lisboa e Director do Serviço de Neurologia do Hospital de Santa Maria em Lisboa.
Fez a sua licenciatura e o seu doutoramento na Faculdade de Medicina de Lisboa, onde iniciou a sua
carreira em 1974. Foi responsável pelo Laboratório de Estudos de Linguagem até 1998 e organizou o Centro de
Neurociências de Lisboa em 1990.
As suas publicações científicas incluem dois livros de texto e mais de 100 artigos em revistas internacionais,
tais como: Brain, Neurology, NeuroImage, Journal of Cognitive Neurosciences, JINS, e inúmeros capítulos em livros
nacionais e internacionais. É membro de diversas sociedades internacionais e consultor de muitas revistas estrangeiras. O seu principal interesse científico relaciona-se com as Neurociências Cognitivas e com as doenças do
Movimento.
Ao longo dos anos o seu trabalho tem sido reconhecido tendo recebido diversos prémios, de onde destacamos o Grande Prémio Medicina da Fundação Bial em 2002 e mais recentemente o Distinguished Career Award
da International Neuropsychological Society, a que presidiu no ano 2000.
37
_contactos / contacts
Instituto de Ciências da Saúde
Universidade Católica Portuguesa
Palma de Cima
1649 - 023 Lisboa, Portugal
Tel: +351 217 214 147
Fax: +351 217 263 980
38
The Enriched Opportunities Programme for people with
dementia living in extra care housing: A randomisedcluster controlled trial of a complex psychosocial intervention
Prof. Doutora Dawn Brooker
_resumo / abstract
The Enriched Opportunities Programme (EOP) is research and practice development programme led by
Professor Dawn Brooker in partnership with the ExtraCare Charitable Trust which has been developed over the past
ten years to support people living with dementia and other mental health challenges. This paper reports on the
most recent stage of this process. We conducted a cluster randomized control trial across 10 Extra Care Charitable
Trust extra care developments (5 EOP intervention and 5 active placebo control). The EOP brings together what is
known as best practice in a structured, systematic way. Key facets include a specialist staff role “the EOP Locksmith”, staff training, individual case work, activity and occupation, support and leadership. Over a period of 18
months implementation a number of very positive outcomes were observed for those facilities that implemented
EOP: residents were half as likely to have to move to a care home, hospital in-patient days were significantly reduced, residents rated their quality of life more positively, had decreased symptoms of depression, and feelings of
social support and inclusion were greater.
_comunicação / paper
Dawn J. Brooker PhD: University of Worcester
Elaine Argyle PhD: University of Bradford
Andrew J. Scally MSc: University of Bradford
David Clancy: University of Solent
Acknowledgements: With many thanks to all the residents, tenants and staff of the ExtraCare Charitable
Trust villages and schemes who took the time to share their experiences with us. .
© 2009 Dawn Brooker, Elaine Argyle, David Clancy and Andy Scally
All names of care facilities, residents, tenants, family members and staff have been anonymised for the
purposes of this report.
We gratefully acknowledge the cooperation of all the above in the commitment they showed in helping
bring this piece of work to fruition.
We would like to thank all the donors who made this research possible through their kind support of the project. These include:
The Forte Charitable Trust
The Freemasons' Grand Charity
Garfield Weston Foundation
The Mercers' Company
The Pilkington Charities Fund
Reuben Foundation
The Henry Smith Charity
The John & Margaret Wootton Charitable Trust
and many others - some of whom wish to remain anonymous.
This report was prepared by Professor Dawn Brooker, Dr Elaine Argyle, Mr David Clancy and Mr Andy Scally
as part of a commissioned piece of research to evaluate the impact of the Enriched Opportunities Programme.
Steering Group members, chaired by Mr Jeremy Porteus and senior staff at the ExtraCare Charitable Trust
contributed greatly to its preparation. Particular contributions were made by Mr Guy Page, Mr Steve Burnell and Mr
David Campey.
There are many more people we could mention who made this programme possible but without the dedication and hard work of our Locksmiths and Project Support Worker Coaches we could not have achieved the
outcomes that we did. We particularly thank Spencer Crowe, Balbeir Gill, April Harper, Patricia Hayward, Mike Hill,
Norma Mather, Annette Platek, Joanne Taylor and Kate Trevis.
Summary
People living in extra care housing have a variety of mental health needs. Whilst many people opt for extra
care housing as a means of enhancing quality of life, it is recognized that around 30% will experience significant
mental health problems notably dementia and depression. This often leads to them having to move out of extra
care housing or becoming isolated within their apartment.
The Enriched Opportunities Programme (EOP) was developed by ExtraCare Charitable Trust and Professor
39
Brooker and her research team as a means of ensuring that people experiencing mental health problems can
continue to enjoy a good quality of life. EOP brings together what is known as best practice in a structured, systematic and proactive way. Key facets of the programs include a specialist staff role “the EOP Locksmith”; staff training; individualized case work; liaison with health and social care teams; activity & occupation; and leadership.
This report summarises a recently completed 2 year cluster randomised controlled trial.
5 extra care housing schemes were randomly assigned to receive the EOP for an 18 month period. A further
5 housing schemes were randomly assigned to receive a placebo intervention consisting of employing an extra
member of staff called a Project Support Worker Coach (PSWC) for the same time period.
We followed the lives of the 268 most vulnerable residents living in all these extra care housing schemes and
villages. We compared the results for people receiving the EOP intervention with the PSWC intervention and analysed the differences.
The process of implementing EOP and the impact on people’s lives has been very positive. The main advantages in the EOP schemes were that residents were
 Half as likely to have to move out into a care home
 Far less likely to spend time in hospital as an in-patient
 More likely to have a GP visit
 More likely to see a community physiotherapist, occupational therapist and a chiropodist
 More likely to have their mental health problems diagnosed
In addition residents in the EOP schemes and villages
Rated their Quality of Life more positively
 Reported decreased symptoms of depression over time
 Reported greater feelings of social support and inclusion

There were also a number of advantages enjoyed by participants in both the EOP and the PSWC interventions. Residents in both interventions reported
 Greater opportunity to be active
 Greater use of community facilities
 More fun
 Greater variety of things to do
This report will be of interest to all those involved in the provision of extra care housing and to those implementing the National Dementia Strategy.
Part 1: The Enriched Opportunities Programme, its development and the methods used in the current study
Key personnel from the ExtraCare Charitable Trust and Professor Dawn Brooker have been working together
since 1998 to find ways of improving the quality of life for people living with dementia. The starting point for the
development of the Enriched Opportunities Programme followed on from the experience of taking a group of ExtraCare nursing home residents with dementia on an Activity Challenge week where people experienced canoeing, abseiling, swimming, hot-air ballooning and a host of other exciting activities. The levels of well-being that people showed on these short breaks staggered us (Brooker, 2001). Once back in the nursing home setting, however,
levels of well-being reverted back to “normal”. This spurred us on to see whether it was possible to really improve
quality of life as part of regular care home routine.
The Enriched Opportunities Programme was developed to address this. A three-way forum for discussion
and action was established between the research team, the practitioners (key operational staff) and family carers
in the four practice development sites, and a group of thirty experts from a variety of research, professional, therapy and training perspectives in dementia care.
Collectively this forum was known as the Expert Working Group. All members brought their expertise to the
group in order to shape the Enriched Opportunities Programme from a theoretical ideal into a usable intervention
within long-term care.
The Expert Working Group met initially for a two-day meeting. The recordings of presentations and ensuing
discussions of this first meeting were transcribed to help guide the project (Brooker and Woolley, 2003). A further
five EWG meetings were held in this advisory capacity over the course of the evaluation. All meetings were recorded and notes made for analysis. Between times, individual members of the Expert Working Group provided
training and mentorship.
A key factor in the development of the Enriched Opportunities Programme was trying it out in real-life situations in a controlled manner and having on-going feedback from the practice development sites and learning
from them. The Enriched Opportunities Programme was implemented consecutively in the four practice development sites with one or more months’ gap between the start of each. This meant that expertise and practical implementation techniques could be developed from each scheme and shared between them. These practice development sites included three dementia specialist nursing homes and one extra care housing scheme.
The published literature was reviewed at the beginning and throughout the development of the programme to develop the research evidence base for the different elements of Enriched Opportunities Programme
(Brooker & Woolley, 2007).
We undertook in-depth case studies in the extra care housing scheme and a quantitative analysis of the
impact across three dementia specialist nursing homes (Brooker, Woolley and Lee, 2007). A repeated measures
within-subjects design was employed, collecting quantitative and qualitative data at three points over a twelvemonth period in each facility with follow-up 7 to 14 months later. 2-way ANOVAs revealed a statistically significant
40
increase in levels of observed well-being and in diversity of activity following the intervention. Participants benefited regardless of level of dependency, diagnosis or level of cognitive impairment. There was a statistically significant increase in the number of positive staff interactions with residents. There was a significant reduction in levels of
depression. The EOP demonstrated a positive impact on the lives of people with dementia in nursing homes already offering a relatively good standard of care, in a short period of time.
ExtraCare housing
The provision of extra care housing is increasingly put forward as a means of improving the quality of life of
those individuals requiring support while maintaining their independence and rights of tenancy or home ownership
(Royal Commission on Long Term Care, 1999; Department of Health, 2005). Within this policy emphasis, it is envisaged that mainstream planning and provision of extra care housing schemes will be inclusive of people with dementia, older people with learning disabilities and those needing intermediate care. The emphasis of this policy on
social inclusion and participation, wellbeing and the enjoyment of active ageing sits well with current literature on
promoting quality of life for older people and those who live with dementia or other mental health problems.
A range of information on providing extra care housing to people with dementia can be accessed through
the Housing Learning and Improvement Network website (Department of Health, 2009).
People living in extra care housing have a variety of mental health needs. Whilst many people opt for extra
care housing as a means of enhancing quality of life, it is likely that some people will experience significant mental
health problems. Some may have long-standing mental health problems that they have experienced throughout
their lives and which re-emerge in later life. Others may go on to develop problems whilst they are living in extra
care housing. Sometimes these problems may be triggered by social and physical losses. Sometimes they may be
a result of neurological disorders such as dementias or stroke.
A preliminary survey of the 10 housing schemes involved in the research reported here indicated that residents experienced significant problems associated with dementia and depression (Brooker, Argyle & Clancy,
2009). Staff teams in extra care housing are able to recognise that people are at risk but do not readily express this
in diagnostic category terms or recognise the need to gain diagnosis and treatment for mental health issues.
Without proactive strategies in place, it is difficult to assess in the longer term what will happen to people
who develop significant cognitive disabilities or other mental health problems within extra care housing. As is the
case with community-dwelling individuals, it could be that the sense of belonging that living in an extra care
scheme could enhance feelings of wellbeing and mental health (Bailey and Mclaren, 2005). On the other hand,
the stigmatisation of people with dementia (Werner, 2005) or people with mental illness (Depla et al, 2005) might
create a barrier to quality of life.
Anecdotally, people with dementia and other mental health needs have been observed to become isolated and stigmatised in schemes that are primarily set up to benefit older people with physical frailties. However,
this area of research is under-investigated in extra care housing.
The only UK longitudinal study looking at how people with dementia fared in extra care housing over a
three-year period showed that residents with dementia and their relatives were very positive about extra care as
an experience (Vallelley et al, 2006). However, over half the people with dementia they followed were admitted to
other care settings during the first two years. Reasons for moving on were given as challenging behaviour, conflicts
with staff and other residents, and the appearance of distress on the part of the person with dementia (Vallelley et
al, 2006).
EOP in ExtraCare housing
Our previous research moved the Enriched Opportunities Programme from a theoretical ideal to a practical
working model. The assessment process, the provision of individualized activity, the person specification and job
description of the EOP Locksmith, staff training needs and the role and responsibilities of the EOP Locksmith, the
staff team and the management staff were all clarified through this evaluation. The refined EOP intervention is
evaluated here using a robust research design known as a Random Cluster Controlled Trial (RCT). The opportunity
arose to undertake this work across extra care housing schemes. Given the increasing emphasis on extra care
housing as an alternative to care at home or care-home provision, it was timely to evaluate this new way of working to assess its outcomes systematically here.
The Enriched Opportunities Programme is a multi-level intervention designed to improve the quality of life of
those with dementia or other significant mental health challenges. EOP consists of five major elements working
together:Specialist Expertise
A senior staff member, the “EOP Locksmith”, is employed as part of the senior team who can work with vulnerable individuals and with the team in order to ensure that residents reach their potential for well-being. The title
EOP Locksmith was chosen to indicate the key role of unlocking potential for well-being. From previous research
we have a clear person specification, job description and training programme for this post.
Individualised Assessment and case work
The EOP Locksmith works with individuals to ensure care is personalised. Specifically they work to enable
vulnerable residents to achieve their goals and to identify types of interventions, occupation and activity that are
most likely to unlock the potential for well-being and to help them achieve their goals. Case work also ensures that
any potential problems are dealt with in a timely manner and liaison with primary and secondary health and care
teams is optimised.
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Activity and Occupation
The EOP Locksmith takes a lead on ensuring that a programme of activity is in place. This programme is
characterised by being variable, flexible and practical to provide opportunity for vulnerable individuals to experience optimum well-being. It is integrated both with the community of the scheme or village and with the wider
local community. EOP Locksmiths work with activity coordinators to ensure that the EOP residents can access the
mainstream programmes and that any planning includes their needs too.
Staff Training
All staff in the schemes who have any face to face contact with residents received a 1-day training course
in person centred care and mental health awareness. In addition, senior staff received a further 3-day course in
enabling residents with mental health problems specifically using the Enriched Care Planning approach (May, Edwards & Brooker, 2009). Skills that staff learn on the training course are mentored by the EOP Locksmith in practice.
Management and Leadership
The site manager works closely with the EOP locksmith to ensure that the facilities focus on providing the
Enriched Opportunities Programme and to embed this into the pattern of working this over time. In addition, all EOP
Locksmiths received support and guidance from the Senior EOP Operational Coach who has overall responsibility
for the EOP across the ExtraCare Charitable Trust.
The Cost of the Intervention1
The actual costs of any intervention will depend on many organisational variables. Up-front costs for this
programme included the following:
 The salary and associated on-costs for the EOP Locksmith
 EOP operational coach management and supervision
 Associated management costs
 Equipment and resources budget
 EOP Locksmith training
 Staff team training
As a guideline cost, operating the EOP over fourteen schemes cost approximately £2,600 per month per
housing scheme.
The Research Design
ExtraCare Charitable Trust identified an initial ten extra care villages and schemes that could be involved in
the study. Schemes varied in terms of size, larger schemes having over 150 residents, medium schemes having 70150 residents and smaller schemes having less than 70 residents. The largest scheme – an ExtraCare village had 300
residents and the smallest scheme around 40.
In the current study 5 ExtraCare housing schemes were randomly assigned to receive the EOP for an 18
month period. A further 5 housing schemes were randomly assigned to receive a placebo intervention. It was anticipated that size of scheme might have an effect on the intervention in terms of numbers of individuals identified.
For this reason the schemes were randomised but stratified in terms of size of scheme and estimated numbers of
residents with problems related to mental health.
In the placebo intervention schemes, an extra member of staff called a Project Support Worker Coach
(PSWC) was employed for a period of 18 months. The PSWC was an extra member of staff whose remit was to try to
increase the activities generally within the scheme. The additional guidance and structures on case work, training
or management support was not available within the PSWC schemes. From staff interviews in our previous research, lack of time to provide individualised care was seen as the major barrier for not helping people with dementia achieve an optimal lifestyle. By providing that extra time in the guise of an additional senior member of
staff, was a reasonable placebo intervention.
The design of the current study ascertained whether the Enriched Opportunities Programme as a whole
intervention has an impact on outcomes or whether the same outcomes can be achieved by just employing an
extra staff member. In “research speak” we compared the EOP complex intervention to an attention placebo
intervention of the PSWC.
Both the EOP and the PSWC interventions were provided by the ExtraCare Charitable Trust. The research
was undertaken by Professor Brooker and her team.
We selected between 20-30 individuals from each scheme who were assessed by the staff team as being
at risk of having significant mental health problems. These problems put people at risk of being either marginalised
from main-stream participation within the scheme, or of being excluded altogether by having to move out of the
scheme.
The sort of resident behaviours that were identified as risk factors included
 confused behaviour such as orientation problems and repetitive questioning;
 communication difficulties such as aphasias or problems caused by significant hearing loss;
 social isolation where residents were reluctant to leave their apartments;
 challenging behaviour such as accusatory behaviour or disinhibited actions;
 and low mood such as sadness, grief and hopelessness.
All residents who met the criteria were approached to see if they would take part. However, any residents
1—
These costs are provided as approximate guideline estimates only. They reflect costs over a particular time period and organizational structure.
42
were free to take part in the evaluation of the intervention or just the intervention if they wished to do so. No-one
was barred from taking part. The research consisted of tracking the experiences of these individuals over an 18
month period and seeing whether the experience in the EOP schemes made more of a difference to people’s lives
than the experience in the PSWC schemes.
Given the nature of the intervention it was not possible from a practical point of view for the researchers to
be blind to the type of intervention. We seriously considered how to do this but concluded that as soon as the researcher entered a scheme it would be obvious to them whether it was an EOP or a PSWC scheme.
The Research Measures
In order to find out whether EOP and PSWC had a differential impact over time, a repeated measures design was used with each facility having measures taken at four points in time:
 Baseline measures were taken of quality of life and care practice before any intervention occurred. Subsequent change was monitored against this baseline.
 Six months after baseline: the study sites were six months into the implementation of either EOP or PSWC.
 One year after baseline: the study sites were twelve months into the implementation of either EOP or
PSWC. At this point the PSWC schemes crossed over to EOP intervention.
 Eighteen months after baseline: Half the study sites had 18 months EOP intervention. The other half had 12
months PSWC and six months EOP.
Given that we already had some data to suggest the efficacy of the Enriched Opportunities Programme in
improving quality of life it was decided for ethical reasons that there should be a cross over to full Enriched Opportunities Programme intervention within the placebo control schemes at the 12 month point. This also provided the
opportunity to control for the effects of within-scheme variables.
The research consisted of many different lines of enquiry.
Firstly, the identified residents were interviewed on four occasions over the 18 months. They completed various inventories and scales during the interview to assess their quality of life, feelings of depression, their social support and general health and well-being. If they lived with a family member they were also interviewed.
Secondly, a member of staff who knew the resident well rated their levels of dependency and abilities. They
also gave their opinion of the person’s quality of life.
Thirdly, the researchers looked through the records to monitor any changes and to collect general background information.
Fourthly, the researchers spent time in the public areas of the schemes observing how people were treated
and how they engaged in the life of the scheme.
We were also interested in whether the EOP had an impact on how much people used health and social
care services so we collected data on this. Also we were interested to see if it impacted on staff attitudes – so staff
filled out questionnaires detailing this.
A full list of the standardised measures is provided in Appendix A. In order to complement the standardised
measures, qualitative enquiries were also utilised including ongoing participant case studies as well as focus groups
and interviews with scheme staff and residents at the end of the intervention. These interviews and focus groups
adopted a semi-structured format in order to facilitate a participatory approach by allowing the participants to
identify relevant themes to be pursued.
Gaining Consent to Participate
We consulted with a number of leading researchers in the field of social research in dementia on the issues
of how best to provide potential participants with the opportunity to give consent to participate or to decline. Reference was also made to the Royal College of Physicians Report Guidelines on the Practice of Ethics Committees
in Medical Research Involving Human Subjects (1996), Medical Research Council MRC Guidelines for Good Practice in Clinical Trials (1998) and Department of Health (2001).
The consent procedure was seen as a process rather than a one-off event, with individuals being given
information about the study on a repeated basis, and a sequence of opportunities being provided to withdraw if
this was their wish. Information booklets about the research that were easy to read were developed with the participant group. The consent procedure followed 3 stages:
Stage 1 A conversation between a staff member and the potential participant occurred during which the
staff member showed the resident the information leaflets and asked whether it would be OK for the researcher to
visit in order to talk with them about the research. If they agreed, they were given the choice of the researcher
visiting them in their apartment or in one of the private sitting rooms in the scheme. They also had the option of
having the member of staff or a relative present during the meeting with the researcher.
If agreed, the researcher visited again showing them the Information Leaflets and asked for their permission
to spend some time talking about the study. If this was granted, after a discussion based on looking at the leaflet,
the resident was asked if they would like to take part. If the person was willing and seemed to be able to understand the request being made of them, the researcher would ask the person to sign a consent form.
Stage 2 If the staff member or researcher considered that the person was not able to understand sufficiently
to give meaningful consent, but was not expressing unwillingness or anxiety about the idea of participating, then
we provided the next of kin with information about the project, and asked them to sign a document confirming
that they know of no reasons why the resident would object or would be adversely affected by participating in the
study.
Stage 3 If objections were raised, which could not be resolved through discussion with staff and/or the researcher, then the process would be discontinued.
If no objections were raised the two members of staff who knew the person, signed a document stating
that the person seemed unable to understand sufficiently to give meaningful consent, but given that a relative
43
had signed a document confirming that it is unlikely that the person would object, it was intended to proceed with
the proviso that further efforts would be made to explain the nature and purpose of the study. If at any time it was
felt that the person expressed unwillingness to be involved, their participation was discontinued.
There was absolutely no obligation to take part in the research. If residents decided not to take part it did
not affect the care and help that they received. Even if they signed the consent form, they were free to stop taking part at any time without giving a reason.
Following the ethical procedures for obtaining consent, participating residents were asked to complete
questionnaires as part of a structured interview with the researcher. This usually took place in the resident's own
apartment or within an office in the housing scheme. The interview was split over a couple of meetings if necessary
and the participant could stop at any time they wished or if the researcher felt they were becoming fatigued.
A number of social situations were also observed and evaluated by the researcher using Dementia Care
Mapping (DCM). DCM is a tool that comes with considerable guidance over its use in an ethical and inclusive way.
All researchers using DCM were trained to advanced level in the use of the tool.
Explanations and consent were sought for all parts of the data gathering including observation at the commencement of the programme. Consent was also ongoing at each observation time. Observation was only undertaken in communal situations in public areas. It took place with the knowledge and consent of those being observed. DCM is a continuous observation and it is quickly apparent to the observer if the participant is uncomfortable about being observed even if they have earlier given their permission. If this occurred the researcher talked
with the participant to try to address their concerns. If the participant remained distressed by the observation then
the DCM observation was discontinued.
Research Governance
The purpose of this research is to investigate an existing way of working by an RCT. The EOP intervention
included individualised case work, an activity programme, staff training and skills development. All the evaluations
were by means of questionnaires, interviews and by qualitative research methods. It was a low risk intervention and
research programme.
Any distress experienced during the interviews was transient and resolved by the researchers who were
skilled at conducting such interviews. Confidentiality and anonymity has been maintained in research outputs and
participants had the opportunity to opt out of their involvement at any time.
With regards to the intervention itself, all of the activities offered are such that they could be seen as part of
normal care without having to seek ethical approval. There are potential hazards in all activities. ExtraCare staff all
work within the framework of Health and Safety Legislation and the Mental Capacity Act to maximise potential for
wellbeing whilst minimising risk. Activities within the Enriched Opportunities Programme included reminiscence, music, drama, creative arts, handicrafts, cooking, outdoor pursuits and sensory stimulation. These activities were risk
assessed in line with normal operating procedures.
From our previous research we knew that there was a high probability that being involved in the Enriched
Opportunities Programme would be of benefit to participants and at worst it would do no harm. Neither the intervention nor the research methods required any direct clinical procedures or investigations. Participants were not
placed at more than minimal risk of physical or emotional harm as a result of any of the research procedures.
Nonetheless, this was a research project and particularly as it involved participants who may have difficulty
providing fully informed consent to participate, we felt that it was important that it received ethical approval from
a disinterested body. During 2006, however, it was not clear who we should approach to provide the check that
we were planning an ethical programme.
We began with the NHS. This project was submitted to COREC at the West Midlands Research Ethics Committee on 19/10/2006 (Project reference number from above REC: 06/MRE07/76.) The outcome was that the committee was of the opinion that the project did not come under the jurisdiction of the NHS REC as participants were
not NHS patients. They were of the opinion that University Ethics Committee approval would be sufficient. Subsequently the research was submitted and approved by the University of Bradford Ethics Committee by end of December 2006.
In accordance with MRC guidelines for Good Clinical Practice in Clinical Trials 1998, a Steering Group was
established to provide overall supervision for the evaluation and to monitor the data. The Steering Group received
research reports and interim data analyses at six monthly intervals. They advised on whether the research should
continue through to the subsequent stages based on these reports.
Feedback on research findings were provided to residents and staff through formal and informal presentations at participating sites prior to the publication of this report. Following the publication of this report, articles will
be submitted to peer-reviewed journals.
Part 2: Comparing the results of the EOP with the PSWC Intervention.
People were generally very pleased to take part in the research and we had very few people either refusing or dropping out part way through because they didn’t like it. Overall 268 residents participated. 135 received
the EOP intervention and 133 received the PSWC placebo intervention. After 18 months around 25% of the original
group had either died or moved on so that we had 199 remaining – 102 in the EOP and 97 in the PSWC schemes.
Advantages for the EOP Intervention
Those in the EOP schemes experienced a number of positive advantages over those residing in the PSWC
schemes.
44
Less likely to have to move out
Over the course of 18 months we lost a number of residents from the study. Sadly forty-two people died
although this was not particularly higher in one intervention than the other and was a usual mortality rate for the
age of residents taking part. The most striking difference was that residents supported by the EOP intervention were
half as likely to have to relocate to care homes than those supported in the PSWC schemes.
Table 1: Reasons for withdrawal from the programme
number of residents
30
25
20
15
10
5
0
Death
Relocation
Refusal
Not available
EOP
23
13
2
4
PSWC
19
24
2
7
22 participating residents moved out of the PSWC schemes to nursing and care homes during the 18 month
period whereas only 11 relocated to these types of locations from the EOP schemes. A couple of residents from
both types of intervention either moved to another housing scheme or in with family members.
EOP
PSWC
Nursing Home
4
15
Specialist Dementia Home
7
5
Residential Care Home
0
2
Private house with family
2
1
Other extra care housing
0
1
Destination of Relocation
Those who relocated from the PSWC sites were more likely to relocate to nursing home care.
Spent less time in hospital
Overall there was a 42% decrease in hospital in-patient days in the EOP sites over the 18 month period.
There was a 52% increase in hospital in-patient days over the same time period in the PSWC schemes. When we
look at the patterns of in-patient days at the different sites, there are a couple of sites in both types of intervention
that had low numbers of hospital days throughout the 18 month period. Generally in the EOP sites that had a relatively high number of in-patient days at baseline, the number of days over time decreased. In contrast, the PSWC
sites that had a relatively high number of in-patient days to begin with, increased the number still further over time.
Table 2: Number of days residents spent in hospital
days in hospital total
600
500
400
300
200
100
0
0‐6 months
7‐12 months
13‐18 months
EOP all sites
246
244
143
PSWC all sites
234
282
492
More likely to have a GP visit
The number of GP visits to people at home increased in the EOP group at home and decreased in the
PSWC residents overall. The number of visits that residents made to GP’s at their surgery remained similar at baseline and 18 months.
45
Table 3: Number of GP contacts
300
250
200
150
EOP
100
PSWC
50
0
GP home visit
baseline
GP home visit
18 month
GP surgery
baseline
GP surgery 18
month
More likely to see a community physiotherapist, occupational therapist and a chiropodist
The number of physiotherapy, OT and chiropody contacts all increased for the EOP sites. These contacts
either stayed the same or decreased at the PSWC sites. The contacts with community physiotherapists doubled in
EOP sites and remained stable in PSWC schemes. Contact with OT’s increased four-fold in EOP but decreased by
half in PSWC schemes. Contact with chiropodists increased by 25% in EOP schemes and remained the same in
PSWC schemes.
Table 4: Numbers of contacts with physio, OT and chiropody
200
180
160
140
120
100
80
60
40
20
0
EOP
PSWC
Physio
baseline
Physio 18
month
OT
baseline
OT 18
month
Chiro
baseline
Chiro 18
month
Possible explanation for changes in use of health resources
Taken together, it looks as if EOP residents utilised community health resources more as a result of the programme than PSWC residents. This could be because EOP Locksmiths have a specific role in liaising with local
health care teams and were either more vigilant in referring people or the residents themselves were more empowered to make appointments. This in turn could have led to less hospital in-patient days.
If this was the case this may also have a bearing on the higher relocation rate to nursing homes in the PSWC
group. Deteriorating physical health problems such as infections or medication problems can lead to a hospital
admission if they are not treated early. Admission to hospital for a person in this age group can lead to loss of confidence and self care skills. This in turn may then result in residents not feeling in a fit state to return to the housing
schemes.
Costs of community health resources and in-patient days
People receiving EOP intervention made greater use of primary and community health care resources
compared to those receiving the PSWC intervention. For the EOP intervention this rose from £26,643 in the first 6
months to £35,877 for the final six months. In comparison the PSWC costs fell from £30,269 to £24,702 for the same
time period.
On the other hand those in the PSWC schemes had many more in-patient hospital days than those in the
EOP schemes. Costs for the EOP residents fell from £58,794 in the first 6 months to £34,177 in the final 6 months. Costs
for the PSWC residents rose from £56,646 to £117,589 for the same period of time.
This gives a net difference of a decrease of £15,383 for the EOP intervention and an increase of £55,376 for
the PSWC intervention. These both relate to costs over a six-month period. The figures on which the costs are based
are drawn from the PSSRU unit costs of health and social care 2008.
Mental health problems more likely to be diagnosed
The incidence of recorded diagnosis of dementia increased in all except one site in the EOP sites. The only
EOP site where it didn’t increase was the one that had the highest formal diagnosis levels at baseline. The incidence of other diagnoses – usually depression also increased at all the EOP sites. In contrast at the PSWC sites, the
incidence of dementia diagnosis increased at 3 sites and the incidence of “other diagnosis” increased at only 2 of
the sites.
46
This may have been due to an increased awareness of the Locksmith and other staff of the importance of
diagnosis for treatment.
Less decline in cognitive function
A proportion of participants across all schemes had their cognitive functioning tested directly using a test
called the mini-mental state examination (MMSE). Overall 100 people in the EOP schemes and a 104 in the PSWC
schemes completed the MMSE at baseline. This test can feel quite threatening for people who are worried about
their memory because they will often fail items on it. We had around 25% of study participants who declined to
complete the test at baseline and at the end of the research period.
However, we still had a reasonable sample across the study sites. In the table below it can be seen that of
the residents completing the test there was a spread of scores from no impairment to some with severe impairment. This shows that the villages schemes were supporting people across the whole range of functioning.
Table 5: Mini mental state Examination scores at baseline and 18 months
Percentage with score
indicating no cognitive
impairment (>26)
Percentage with score
indicating mild impairment (21-25)
Percentage with score
indicating moderate
impairment (10-20)
Percentage
wi t h
score indicating severe impairment (0-9)
Baseline
18months
PSWC
23
32
23
19
40
32
14
18
Baseline
18months
23
31
33
27
38
28
10
4
EOP
At 18 months the EOP schemes were continuing to work with a higher proportion of people in the severe
category. This may be related to the higher number of relocations from the PSWC sites.
In people with dementia it would be expected that their individual scores would decline over time. Over
time, on an individual level for those who had the test repeated, there was no decline in the EOP group. The trend
was towards improvement.
In the PSWC schemes, however, there was a significant decline in the performance of individuals on this test
over time.
Quality of Life rated more positively
Using a standardised questionnaire during an interview, residents were asked to rate their quality of life on a
number of different dimensions - physical health; energy levels; mood, living situation, memory, relationship with
family & friends; self as a whole; ability to do chores around the house; ability to do things for fun; money/financial
situation, and life as a whole.
The ratings of quality of life made by the participants themselves in the EOP schemes rose significantly over
the course of the intervention. The ratings of quality of life by participants also rose but not to a significant level until
the eighteen month point.
Staff, that knew residents well, also rated residents’ quality of life on the same dimensions. Generally staff
rated the quality of life of EOP residents better than staff rated quality of life for residents in PSWC schemes. At 18
months, 6 months after the switch over to EOP, staff in the PSWC schemes rated a significant improvement on the
participants’ quality of life.
Decreased symptoms of depression
This was assessed during the interview with the residents using a standardised measure of depression. A high
score indicates greater feelings of depression. A score of 6 or over indicates that the person may be clinically depressed.
Those in the EOP schemes had a significant and sustained reduction in their self-rating of symptoms and
feelings of depression over the period of the intervention. Although there was a downward trend in symptoms in
the PSWC schemes this was not sustained to a significant level.
47
Table 6: Average Geriatric Depression Score
7
6
5
4
EOP
PSWC
3
2
1
0
Baseline
6 Month
12 month
18 month
Time period
Staff that knew the EOP residents well also rated significantly less signs of depressed mood than staff rated
signs in the PSWC schemes.
Feelings of social support maintained
As part of the interview, residents completed a questionnaire about their feelings of being socially supported – particularly in their perceptions of the relationships they experience.
Those residing in PSWC said that they felt less socially supported over time. There was no significant change
in how those in the EOP sites felt over time about the level of social support they received.
Gains Made by Residents in both the EOP and PSWC Schemes
There were a number of advantages enjoyed by participants in both interventions. Taken together it would
appear that employing an extra member of senior staff increases activity and enjoyment. However, in order to
have the added impact on quality of life, levels of depression and feelings of belonging, the extra factors involved
in the EOP intervention are necessary.
More activities and more fun
As an indicator of general activity, records were looked at to discover the number of activities that people
took part in over the past 4 weeks. There was a great deal of variation both on an individual and site level. Taken
as a whole, however, the number of activities that were available to participants increased significantly both at
the EOP and the PSWC schemes, although the rate of increase was higher at the EOP schemes. This was particularly the case for activities that were participated in-house rather than outside the schemes.
The enjoyment of activities undertaken in the last 4 weeks was rated on a 1-5 scale. An average enjoyment
score was then allocated to each participating resident. Average scores showed a general enjoyment of activities and gradual increases in this enjoyment in both EOP and PSWC sites. The reported enjoyment of activities was
consistently higher in the PSWC sites but this difference was not statistically significant. Over time there was an increase in enjoyment of activities at both the EOP sites and the PSWC sites.
More variety and improved well-being
In-depth observations were undertaken by the researchers at each stage in the communal areas of the
schemes. We were particularly interested in observing changes in well-being and diversity of activities that were
engaged in. The diversity of activities that people were observed in communal areas within the schemes increased
significantly in both the EOP and PSWC schemes and was actually at its highest in the PSWC schemes 6 months
after they had converted to the EOP intervention. Levels of improved and observable well-being in communal
areas also improved significantly both in the EOP and PSWC schemes.
Things that did not change through the intervention
Level of function in activities of daily living
In both the EOP and the PSWC schemes there was a significant decline after 18 months in individuals’ ratings of their own dependency and their ability to do every day activities independently. This decline would be expected given the health profile of the people taking part. It may have been that if they had not taken part in the
EOP or the PSWC schemes that the decline would have been even steeper. We cannot tell this from the current
study. What we can say, however, is that the interventions did not impact differently on dependency over time.
One of the quality of life measures that rated satisfaction with mobility, pain, self-care, activities and anxiety/depression also declined significantly in both the EOP group and the PSWC group.
Satisfaction with level of support remained high
Participants in the EOP and the PSWC sites rated the level of support they received as very good right from
the start of the programme. This did not change over the 18 months. They still continued to rate it as very good.
48
Staff attitudes remained positive
Staff filled in attitude questionnaires at baseline and at 18 months where they answered questions about
their attitudes to people with dementia and about caring for older people. These were very positive at baseline
and remained so at the end of the measurement period.
Staff turn-over unchanged
There was no noticeable change in staff turn-over through the course of the research.
Part 3: Themes from interviews, focus groups and case studies
In order to complement and supplement the quantitative data in this research, some qualitative methods
were also utilised. Focus groups were carried out with non-participating residents and members of onsite staff
teams at the end of the intervention. During the same period, one to one interviews were also held with site managers, EOP Locksmiths and the relatives of participating residents. Principles of consent, anonymity and confidentiality were adhered to and proceedings were recorded and transcribed. For the purpose of analysis, transcriptions
were then divided into themes and sub themes in accordance with the interpretative phenomenological approach (Smith and Osborn, 2004). A brief summary of these themes are outlined below.
Valuing the EOP Locksmith Role
The EOP Locksmith role was recognised by all the groups interviewed as being crucial to the success of the
intervention particularly its importance in resident advocacy;
My views were always very strong before but they’re even stronger now. I’m very determined to fight for
those residents who’ve got illnesses. They need looking after and they need someone fighting their corner. A lot of
them are on their own they’ve got no family or next of kin and they need someone there who is looking out for
them. (EOP Locksmith)
In addition to their work with residents, EOP Locksmiths were seen as being key to promoting communication and liaison, with staff as well as with relatives and carers:
I do think that mum responds to seeing someone on a regular basis and (the Locksmith) has been that person and it’s helping us all to keep on top of what’s happening with mum. (Relative)
Staff relationships are brilliant it couldn’t get any better I get a lot of respect for what I do. (EOP Locksmith)
However some respondents felt that there was an initial lack of clarity in Locksmith role and the Locksmiths
themselves could feel overloaded by the demands placed upon them. These issues diminished over the course of
the evaluation as roles became clearer and Locksmiths were advised to focus on a small group of residents at a
time:
I had seen Locksmiths as being more activity involved …my understanding now is that it is working with individuals and understanding why they are as they are really, trying to get to the roots of the problem and then to
pass that knowledge on to the key workers and the staff team. (Manager)
I started out thinking I had to solve all their problems from day one and I felt a bit frightened. I think the
supervision from the coach has helped tremendously as he suggested I work with five residents at a time…now
things have fallen into place and I feel a lot happier. (EOP Locksmith)
Indeed, by the end of the evaluation, Locksmiths tended to express a high degree of job satisfaction:
I’ve really enjoyed the EOP experience and the learning, the involvement with the residents and getting
them out and about. It’s been a very uplifting experience. (EOP Locksmith)
I think it’s an amazing opportunity to be able to do a job like this. (EOP Locksmith)
The Value of Training
A key feature of the Enriched Opportunities Programme has been the provision of training, not only to Locksmiths but also to the wider staff team. Impressions of the training were overwhelmingly positive:
I understand now how to talk to the residents who do have dementia. Before I used to speak to them like
children, now I speak to them like they’re proper people. Just because they’ve got dementia doesn’t mean that
they can’t remember. (Staff Member)
All the other staff say it was the best training they’ve ever done, it was absolutely fabulous. (Manager)
It makes you more aware doesn’t it? I always tend now to get down to their level if they’re sitting in a chair
and I don’t speak behind them or to the side of them. (Staff Member)
However, some felt that they needed more training or regular updates in order to be fully confident in their
role:
I think staff actually need more training in dealing with people with dementia because you don’t know if
you are dealing with things in the right way. (Staff Member)
Integration and Stigmatisation
The Enriched Opportunities Programme was felt to have had a generally positive impact on participating
sites, leading to an integration of vulnerable residents:
It has benefited the frailer residents immensely and they’ve got a much more improved quality of life,
they’re not sat watching four walls and a television, they’re out and about. (EOP Locksmith)
There’s a bit more quality time that’s spent with the individuals rather than before when it was a little bit of
an ‘add on’ for want of a better word. (Manager)
One of the implications of this greater visibility of vulnerable residents was the perception that schemes
were being ‘taken over’ by such residents, resulting in stigmatising attitudes from some of the wider resident group.
This attitude was particularly apparent in the more newly established villages. As one non participating
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resident commented:
More than 60 percent of residents think they shouldn’t be here, they say it’s more like a nursing home….
When extra care was built we all knew from day one that we were going to have these people and that they are
entitled to be here as much as anybody else. (Resident)
However, as the intervention progressed it appeared that some of these negative attitudes began to subside, leading to an increasing acceptance of the participating group. As a Locksmith observed of two residents
who had previously been ostracised by some:
He’s a lot more confident, he’s a lot more popular, he’s mixing a lot more with people he wouldn’t probably have spoken to or they wouldn’t have spoken to him. (EOP Locksmith)
She’s a lot more integrated with the residents, there are several core residents now that have really taken to
her. (EOP Locksmith)
Case Studies
In addition to the qualitative investigations outlined above, six case studies of participating residents were
chosen at each site, in consultation with the EOP Locksmith and the resident themselves. Each individual was interviewed at the 6 month, 12 month and 18 month research phases. Corresponding interviews were also carried out
with the Locksmith and another care worker who knew the resident well. A summary of six representative case
studies from intervention sites are shown below.
Mrs Yellow: Living with dementia in extra care
Mrs Yellow was in her eighties and prior to joining the EOP intervention, had lived in extra care housing for 12
months. Shortly after moving there, she had a stroke and was admitted to hospital. On her return she had become much more confused, was diagnosed as having vascular dementia and was on the verge of being relocated to an EMI care home. She was also isolated, having no visitors and not participating in onsite activities:
I wanted her on the programme purely and simply because of the animosity from the other residents here,
they didn’t want her here, they said she should never have moved in here and I felt that somebody should be
fighting her corner because she had the whole building against her. (EOP Locksmith)
In addition to an advocacy role, the EOP Locksmith liaised with her GP about physical problems such as
painful teeth and gained permission to reduce the high levels of Rispirodone prescribed to her while she was in
hospital.
The EOP Locksmith also introduced a regular volunteer be-friender to visit Mrs Yellow. She subsequently
showed a marked improvement after her sedatives were stopped and appeared to become more orientated.
She also began joining in activities more and interacting with staff and residents:
She spent a lot of time on her own, her mind wasn’t active she was left to her own devices and now she
seems to have really picked up. (Staff Member)
Since baseline measures, her abilities in the activities of daily living remained largely stable and there were
general improvements in Mrs Yellow’s well being including her perceived quality of life, her mental state and her
involvement in activities:
The social workers can’t believe the change in this lady, she’s involved in activities every day, she’s in the
restaurant every day, goes on shopping trips and day trips out…..She looks a lot better but it’s what’s inside as well,
she’s more content, more settled. (EOP Locksmith)
Having avoided her relocation, by the end of the evaluation, the main expressed goal was to enable Mrs
Yellow to stay at the site:
I see no reason why we can’t at the moment, unless she has another stroke, physically she’s quite fit and
able. (EOP Locksmith)
Mr Lilac: Enabling a lifestyle change
Mr Lilac was in his late fifties and had lived in extra care housing for eighteen months at the commencement of the EOP intervention. He had experienced many challenges throughout his life. He had become isolated
and had lost pride in himself. He had a number of on-going health problems that he had given up attending to.
The EOP Locksmith worked with Mr Lilac through the provision of one to one counselling, liaising with social
services about accessing his finances and physical interventions such as getting him a wheelchair, monitoring his
diet and prompting in self care activities:
I’ve worked very closely with (Mr Lilac) in the last 6 months, getting him out and about getting him involved
in activities, smartening him up, getting him decent clothes, getting him to wear his decent clothes, tidying him up
a bit better, getting him bathed regularly, getting his medication, taking him to hospital because he’s seeing a
cardiologist and following that through. In the last 4 visits that he’s had he’s had his eyes and his ears done, seen
the chiropodist and his finances are a lot better now. He’s got money every day and he’s spending that in the
shop”. (EOP Locksmith)
Mr Lilac enjoyed individual interaction, particularly going shopping with the EOP Locksmith when he bought
some new clothes:
I like going shopping with (the Locksmith). We bought some new clothes and I usually only get them second hand. (Mr Lilac)
He knows that there’s someone looking out for him, he loves to see me and he asks for me, we’ve just got a
good relationship and he trusts me. (EOP Locksmith)
By the end of the evaluation, Mr Lilac was taking pride in his appearance, mixed more with other residents
and enjoyed music, cards, darts, snooker and bowling as well as having an improved financial situation:
He loves music and the highlight for me was when we got him on the dance floor and I had a lot of comments about it because they were just amazed that he got up and danced, he walks with a frame, not very confident but he got up and danced….He’s just a bit more involved than he was before, his neighbours speak to him
50
now, they didn’t even know they lived next to him. Because he’s got learning disabilities and the way he looks and
presents, there were people who said he shouldn’t be here that this wasn’t the place for him. (EOP Locksmith)
Mrs Black: Living with depression in extra care housing
Mrs Black was a lady in her eighties who had no signs of cognitive disability but who had struggled for many
years with clinical depression. She was initially happy after moving into the extra care housing two years earlier but
gradually became isolated from other residents and mistrusting of staff, particularly relating to her medication. At
the start of the intervention, staff reported that she had become very depressed. They had serious worries that she
might do herself harm and had taken control of her medication.
She’s got a lot of problems and she needs company and to get out of her flat and to make new friends.
(Staff Member)
After joining the EOP intervention, the EOP Locksmith encouraged her to become involved in activities and
spent one to one time with her:
We’ve become very good friends, she trusts me 100 percent. (EOP Locksmith)
The fact that she, in consultation with the staff team, had now recovered control over her medication had
also been positive for her and helped to restore her trust in the staff who had themselves been encouraged to
adopt a coordinated and consistent approach in interactions with Mrs Black. Her greater involvement in activities
had also seen positive changes in Mrs Black’s mood:
(The Locksmith) encourages me to go and join in if she didn’t I probably wouldn’t go and I’d get depressed
again. Yesterday I thought I don’t want to stay in this flat all afternoon so I put my shoes on and went down. (Mrs
Black)
By the end of the evaluation, staff reported that Mrs Black had become more trusting, calm, relaxed and
sociable:
If she’s got a low day she knows that she has the Locksmith and staff around her so that she won’t feel isolated. (Staff Member)
In addition, from our structured observations, it could be seen that Mrs Black’s involvement in and enjoyment of activities and level of independence in the activities of daily living had markedly improved throughout the
intervention. Her perception of her quality of life was also much better and her reports of symptoms of depression
had correspondingly decreased.
Mr Blue: Coping with caring and bereavement
Mr Blue was in his seventies and had lived in extra care housing for many years. He had initially moved
there as he needed help in looking after his late wife who had dementia:
We came to here because of my wife’s health and keeping up the family home was no longer viable. We
looked at all sorts of options like stair lifts and came to the conclusion that it would be better if we were on one
level. Having made that decision we’d already been volunteers at this scheme and the manager suggested that
we should apply to come in. (Mr Blue)
He did not regret his decision to relocate, for not only did he get support in his wife’s care but his social horizons were also broadened:
I thought my horizons would be reduced but I think I discovered when we moved in that actually my horizons were increased. Because things that I would not have been able to do because of the responsibility of caring
for my wife, I was able to do in this environment as there was always someone to look after her. So with no feeling
of guilt I was able to leave her on odd occasions and do something else. (Mr Blue)
He was selected to take part in the programme because, after the death of his wife about a year ago, he
had become clinically depressed:
Being on my own has been incredibly difficult and I’m still adjusting to that. Having been a carer for so
many years, you get to the situation where the care is no longer required but you’re still a carer at heart, so up to a
point you’re living in a bit of a vacuum. (Mr Blue)
He also had a tendency to hide his true feelings and put up barriers:
Its like a defence mechanism, it’s not the real me but it’s the one I let people see. (Mr Blue)
Throughout the intervention, the EOP Locksmith gave Mr Blue individual attention and acted as a point of
contact for him. She also tried to raise staff awareness of depression and its manifestations. The assistance given
was a two way process as Mr Blue, in his former caring role, had gained expertise in the area of dementia:
He has actually helped me loads, he’s given me information about Alzheimers and dementia care and he’s
escorted me to a meeting of the Alzheimers Society. (EOP Locksmith)
We’ve helped each other to an extent. She’s helped me when I’ve been really low and still going through
the process of bereavement and I’ve helped her to a certain extent. (Mr Blue)
He enjoyed discussing his feelings with the EOP Locksmith as well as with other bereaved residents:
I’ve found living here that, as someone on their own, I’m nobody special because everyone’s on their own.
(Mr Blue)
He also began to mix more, joined a relaxation programme and a men’s group. He reported enjoying life
more and experienced fewer depressed symptoms.
The CPN came to see me yesterday and said that I’d be taken off their list as I had made the sort of progress that they hadn’t anticipated. (Mr Blue)
Mrs Orange: Living with sensory disability in extra care
Mrs Orange was in her eighties and had lived in extra care housing for about 9 months. She had moved
from her former home due to physical problems relating to her eyesight, hearing and mobility:
That’s what stopped me, my sight, I do wish they could do something, its what they call age related macular degeneration. I think it’ll go on age, they’ll treat the younger people first. Age does depend on a lot of things
51
so I don’t think I’ve got much chance. (Mrs Orange)
She was a widow, her daughter had died and she only had contact with her grandson who she did not
want to be a ‘burden’ to:
At first I couldn’t really settle, they told me I could do as I like in my own flat, you can please yourself, you’ve
got your independence, which I didn’t expect. But I also thought, I’ve only got a grandson and all the problems
would be on his shoulders which isn’t fair so I decided to come. (Mrs Orange)
As a result of her physical impairments, combined with her great independence and corresponding unwillingness to ask staff for help in attending activities, she had become increasingly isolated:
I don’t bother the staff unless I’ve got to… If I wanted to go and mix I could, it’s not that I don’t want to, its
just that I can’t see to do flower arranging and things like that I don’t go up much for anything…I would have liked
to do the gardening, I’m not a card player but I like dominoes…I know they have a pub meeting upstairs but I
don’t go because I cant hear so I don’t really go out much at all. (Mrs Orange)
Throughout the Programme, the EOP Locksmith provided encouragement and assistance to Mrs Orange
and liaised with relevant outside agencies:
I’ve been spending time with her one to one. Its not personal care, its things like opening tins, reading instructions on microwave labels…one of the ladies that has worked with us in the past from the sensory impairment
team is booking in training with us on sensory impairment and were all going to learn about how things need to be
like serving a persons meal, meet needs to be at 12 o clock, potatoes at 6 o clock. (EOP Locksmith)
The Locksmith also gave Mrs Orange assistance with some tasks such as new hearing and sight aids, in order
to maximise her independence:
I’d like to be able to see a bit better and to do things. I’d like to be able to hear a little bit better I can hear
a bit with all these contraptions and I’d like to be able to do things all for myself. (Mrs Orange)
While Mrs Orange experienced further deterioration in her hearing and eyesight throughout the intervention, she also experienced an improvement in her perceived quality of life, benefiting from the aids and adaptations obtained for her, developing a good relationship with the Locksmith and becoming more involved in social
activities:
She never went on trips before but in the last few months she has. (EOP Locksmith)
Mrs White: Facilitating integration and involvement
Mrs White was a lady in her seventies and had lived in extra care housing for two years. She had formerly
lived alone in warden-controlled accommodation. At the beginning of the EOP intervention staff were aware that
she had been diagnosed with dementia. She had also become isolated and did not like the fact that, for health
and safety reasons, her access to cigarettes was controlled by staff. This issue had been the source of much conflict between Mrs White and the staff team:
The carers bring me 20 every morning but I think they should be in my flat and not in their room, they control
my cigarettes and that I do not like. I feel controlled. (Mrs White)
The EOP Locksmith liaised with the local GP and her daughters and devoted much one to one time with Mrs
White. She aimed to get her more involved in organised activities and to help her understand why her access to
cigarettes was controlled:
She’s been encouraged to join in things and to not spend as much time on her own which I don’t think is a
good thing. (EOP Locksmith)
The Locksmith also encouraged staff to adopt a more flexible approach in interactions with Mrs White, incorporating lots of gentle encouragement and respect.
It’s a fine line with (Mrs White) and you’ve got to respect her decision if she doesn’t want to join in. (EOP
Locksmith)
Her physical well being was monitored, with an infection being identified and treated and assistance being
given in self care:
(Mrs White) had a terrible infection but because people were saying that she’s got dementia, they put her
behaviour down to that but once they sorted the infection out things got a lot better. People tend to pass if off
don’t they and really that’s everybody’s fault. (EOP Locksmith)
Mrs White enjoyed the one to one attention from the EOP Locksmith and began to see her as a point of
contact in the staff team:
The one to one worked well she’s built up a good relationship with (the Locksmith)…she’s seen a lot of
changes and she needs to build up a good relationship with a few members of staff rather than a lot. (Staff Member)
By the end of the intervention, Mrs White had become more settled, her relocation to a care home had
been avoided and her integration and involvement in the life of the site had improved:
I think (Mrs White) was chosen for the programme because of her illness, she was getting worse she was
getting more and more isolated and agitated. It was quite sad to see the change but since she started joining in
more there’s been a change in her. (Staff Member)
Final thoughts
The results of the EOP are very positive. This has been a complex intervention operating as it does on a number of different levels. We have continued to learn about the intervention along the way. The feeling on the frontline is that if we were starting over again now, we could achieve significant change more quickly. The EOP way of
working has been rolled out in a further four ExtraCare villages and continues to change the lives of people who
face significant problems.
What surprised us most was, that in a relatively short period of time, the different elements of EOP did not
52
just lead to an improved quality of life for people with significant mental health problems but also had a big impact on relocations and hospital bed-days. There were a number of advantages enjoyed by participants in both
interventions. Taken together it would appear that employing an extra member of senior staff increases activity
and enjoyment. However, in order to have the added impact on quality of life, levels of depression and feelings of
belonging, the extra factors involved in the EOP intervention are necessary.
The National Audit Office (NAO, 2010) carried out a secondary analysis on the EOP data. They concluded
that if EOP were rolled out to all extra-care housing schemes in England over a two-year period, the net savings to
the public through reduced hospital stays and reduced use of nursing homes could be £21 million, shared between
Local Authorities and the NHS (or a net present value of £89 million over 10 years).
One of the limitations of the current research was that all the study sites belonged to one extra care housing provider. It is unclear whether the EOP intervention would have the same impact in housing schemes provided
by other providers. The housing support provided by the ExtraCare Charitable Trust has a strong resident focus
which champions the rights of residents. None of these schemes cater specifically for ‘vulnerable’ groups, although
selected participants in this research did show relatively high levels of mental health problems. The EOP intervention was designed for schemes where people with dementia were integrated within the housing community. By
and large residents with dementia had developed this following moving into the scheme rather than having significant problems before moving in. A number of extra care housing providers have designed schemes -or parts of
schemes – specifically for residents with dementia. The evidence here is insufficient to say whether the EOP approach would be beneficial in specialist dementia schemes.
The EOP was designed as a complex multi-level interventio. Evaluating it within an RCT design was not without problems. In many respects it would have been neater to have evaluated each element of the EOP separately to ascertain their respective contributions to the outcomes. We cannot say whether training alone for example would have led to a beneficial outcome. However, the previous development underlined that in real service
settings providers did not see it as desirable or possible to split off the different elements.
Research with people with dementia in extra care housing is a relatively new field of endeavour. Outcome
measures in this context are in development. Our original choice of primary outcome was DCM but through the
course of the evaluation it became apparent that the QOLAD was more useful in we could collect meaningful
data from a greater number of residents directly using this.
Methodological as well as operational issues may have also impacted on the evaluation process. Given
the “real-life” nature of the issues under scrutiny it was impossible to blind the researchers to the intervention type.
However, the use of methodological triangulation aimed to minimise any researcher bias and the incidence of
reactivity in participant’s responses. It should also be noted that, in addition to the positive impacts experienced
as a result of the EOP intervention reported above, other measures showed similar levels of change over both types
of intervention. For example, the number and diversity of activities participated in and the level of enjoyment of
these activities increased in both EOP and the active control sites throughout the intervention.
However, we cannot rule out that bias may have crept into some of the data collection, particularly those
collected by interview or by observation. The researchers did form relationships with all the residents and staff in the
study sites over time. The experience of the researchers was that staff at all schemes, regardless of which intervention (EOP or PSWC), had a huge desire to do well. The fact that there were significant differences in the economic
outcome data, such as moves and hospitalisations, for the EOP intervention validates to a certain extent the other
changes seen. These data coming as they did from written records of events would not have been influenced by
researcher-staff bias.
Given these caveats and limitations, this study demonstrates that it is possible to provide a cost-effective
intervention that promotes well-being and quality of life for people living with dementia. The EOP intervention elements should be generalisable to similar service settings where people with dementia are integrated into housing
schemes that are well-resourced and have a relatively stable staff and management team and who are committed to improving the quality of lives for people living with dementia.
Next steps
ExtraCare Charitable Trust is committed to retaining the Enriched Opportunities Programme in all its housing
schemes and villages. At the beginning of the randomised controlled trial, the ExtraCare Charitable Trust felt that
this approach would bring benefits to residents. What the trial has established is that the benefits are considerable
both in terms of quality of life, improved mental health and the ability to age well in a place where people have
made a conscious choice to live. We are able to support people in their personal choices. We feel confident now
that this is the right model for supporting people longer term.
Even prior to the publication of this report, the EOP intervention has been held up as a model example of
good practice. The Enriched Opportunities Programme won a prestigious National Charity Award in the category
of Healthcare and Medical Research in June 2009.
Up until now EOP has been funded by charitable giving. We will continue to work on this model until longer
term funding can be identified and applied.
We continue to evolve the model in practice. For example as EOP Locksmiths become more established
we are investigating whether having one Locksmith working across 2 sites is possible without diluting the impact of
the intervention.
We are currently working on a series of practice guidelines around the implementation of the different elements of the EOP. We also want to formalise the role of training and education interventions to support the development of the intervention.
The research will be written up for peer reviewed journals and a number of conference presentations are
planned both in academic and practitioner forums over the next twelve months.
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References
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Appendix a summary of measures
Description of the target population and selection criteria included
Enriched Opportunities Inclusion Criteria (devised for the study).
 BADLS Bristol Activities of Daily Living Scale (Bucks et al, 1996):
 BARTHEL Inventory (Mahoney & Barthel 1965);
 The mood scale of the BASOLL Behavioural Assessment Scale of Later Life (Brooker, 1997);
 Mini Mental State Examination MMSE (Folstein et al, 1975)

The selected standardised outcome measures included
 Quality of Life – the QOLAD (Logsdon et al,2000) and
the EQ5D (Brooks, 1996)
 Impact on observed well-being during social activities: Dementia Care Mapping (Bradford Dementia
Group, 2005: Brooker, 2005)
 Perceived levels of social support e.g. Duke Social Support Index (DSS; Koenig et al, 1993).
 Impact on psychiatric morbidity; Geriatric Depression Scale; GDS (Sheikh & Yesavage, 1986) SF 12 (Ware
et al 2002).
 Impact on staff attitudes and behaviour ADQ Approaches to Dementia Questionnaire (Lintern & Woods,
1996);

In addition the following data was collected at each stage in each facility
 Level of activity; Number of activities that the participant has taken part in the past 4 weeks both within
the scheme and outside of it. Participants will be asked to rate their enjoyment of the various activities on
interview.
 Number and type of relocation to alternative care environment (e.g. nursing home)
 Mortality rate i.e. number of deaths, and duration of residence prior to death, follow-up mortality rates on
residents who have moved into nursing homes.
 Number of significant health events (e.g. falls), number of hospital in-patient days
 Staff turn-over
For those residents who were unable to cope with pen and paper tests we also carried out key worker
(staff) proxy reports of quality of life and well-being. All researchers will be experienced interviewers of older people and will endeavour to collect direct reports where ever possible.
Given the novelty of the intervention and the lack of sensitive standardised measures that have been used
with this population, we undertook some qualitative enquiries to ensure we captured the full impact. These included case studies with participants and focus groups with staff, Locksmiths, Project Support Worker Coaches,
scheme managers and non participating residents which took place at the end of the intervention. Case studies
were also undertaken on 3 participants per site including those with live-in family members.
_nota biográfica / biographical note
Professor Brooker is a clinical psychologist who has worked in a variety of clinical, academic and managerial posts in services for older people since 1984; demonstrated both academic and clinical achievement and
leadership in the field of dementia studies, recognised for scholarship in practice development of person-centred
care for people with dementia and in innovative therapeutic interventions.
55
_contactos / contacts
Association for Dementia Studies
St Johns Campus, University of Worcester
Worcester
WR2 6AJ
UK
Tel: 01905 855250
E-mail: [email protected]
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A depressão nos mais velhos: aspectos relativos à família
Prof. Doutor Manuel Gonçalves Pereira
_nota biográfica / biographical note
Médico, psiquiatra e terapeuta familiar. A sua actividade principal é como Professor Auxiliar de Psicologia
Médica no Departamento de Saúde Mental da Faculdade de Ciências Médicas, Universidade Nova de Lisboa
(onde também é investigador no CEDOC).
Tem-se interessado pelas áreas da psiquiatria geriátrica, das intervenções e terapias familiares e da epidemiologia psiquiátrica. Outros interesses profissionais: psicologia da saúde, comunicação em saúde, promoção da
saúde mental, avaliação de serviços de saúde mental e educação médica.
_contactos / contacts
Departamento de Saúde Mental e CEDOC
Faculdade de Ciências Médicas,
Universidade Nova de Lisboa (FCM, UNL)
Campo dos Mártires da Pátria 130
1169-056 Lisboa, Portugal
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