Quality of life and dementia

1. Quality of life and dementia John Bond Professor of Social Gerontology and Health Services Research

2. Credits Lynne Corner, PhD Alzheimer’s Society Research Fellow Funding: UK Alzheimer’s Society

3. Disclosures • Social science consultant to Pfeizer and Bioscience Communications for European Dementia Forum to raise awareness of dementia in Europe April 2004 – April 2005

4. Characteristics of dementia • Loss of intellectual power • Problems of memory • Problems of understanding • Practical incompetence • Decline in personal attributes • Socially unacceptable behaviour

6. Dementia is a terminal illness “Illness is a moral experience. When we are sick, we soon face new definitions of who we are, what we are capable of and how others see us” (Schneider and Conrad, 1983)

7. Key questions about dementia • What is the experience of older people of dementia? • What is the experience of people with dementia? • What is the experience of dementia for carers?

8. Experience of dementia I mean your life, I think is over ... and I know people that have nursed people with dementia and they end up nearly as potty as they are because it’s so frustrating. It’s one of the most appalling, frustrating diseases because ... you can’t remember who has been and done things for you or anything. Oh! no I think it’s sad, that, I think it’s terrible. (Older person, 1)

9. Fears of dementia and this is one thing I do just dread, and that is Alzheimer’s, very much so, because my father had it. (Older person, 1) the mere thought of dementia terrifies me … more than any other thing [disease] to die from … like cancer (Older person, 15)

10. Marginalisation of dementia when you’re old, you’re on the scrap-heap, or at least you feel as if you are, that is people make you feel as if you are. I suppose I think that the people who have Alzheimer’s and dementia are at the bottom of the scrap heap, and ... most people would just think they should die ... (Older person, 7)

11. Awareness of dementia If other people that were round me understood more about what is happening to me, I think that would improve my quality of life, overall, maybe. ... I mean I think better awareness ...as a community, as a society is critical really. (person with dementia 6)

12. Understanding of dementia I think if there was more understanding, that would help me overall. People don't understand, they don't want to understand and ...they haven't got a clue and that's ..difficult. (person with dementia 5)

13. Awareness of dementia I think there's a complete lack of awareness about what Alzheimer's and dementia is .. I think people are frightened of {my wife}, they can't cope. I think if we had better understanding I think that would improve quality of life for both of us, like, for {my wife} and me. (Carer 6)

14. The stigma of dementia a friend of his, a very good friend actually, they’ve been running for years together, came out and saw him last year and said “Right , {husband}, I’m still running … I’ll come and pick you up and I’ll take you and I’ll bring you back, give us a ring if you want to go”. So, I says “Do you want to go?” “Yes”. So I rang and told him he wanted to go and he never rang back and that really, really upset him. I don’t think he ever got over that yet. (Carer 1)

16. Perspectives of dementia • Biomedical model • Psychological model • Social model • Bio-psycho-social model

17. Biomedical model • Focus on the condition • Loss of normality • ‘Personal tragedy theory’: ‘victims’ or ‘sufferers’ • Individualisation and medicalisation

18. Psychological model • Focus on disability, and social psychological adjustment to the condition • All individuals have a unique and absolute value • Concepts of personhood

19. Social model • Subjective interpretation of experiences • Meaning • Wider political and social environment • Life history • Temporal dimension

20. Bio-psycho-social model • Inter-disciplinary approach • Focus on the person with dementia • Recognises dementia as having biological, psychological and social aspects • Characterises dementia as a disability

21. Key questions about quality of life • What is quality of life? • Whose quality of life? • How should we define quality of life? • Should we measure quality of life? • How should we assess quality of life?

22. What is quality of life? ‘On the whole, social scientists have failed to provide consistent and concise definitions of quality of life. The task is indeed problematic, for definitions of life quality are largely a matter of personal or group preferences; different people value different things.’ (George & Bearon 1980: 1)

24. Quality of Life Themes • Personal autonomy factors: • perceptions of risk, control, choice • Personality factors: • sense of worth, identify and self esteem • Health status characteristics • Physical well-being, dementia-specific • Physical environmental factors: • living arrangements, shopping, transport, ADL • Social integration: • family and friends and wider community

25. Whose quality of life? • People with dementia • Family carers • Health and social care professionals • Service managers • Policy makers • Researchers

26. Assessing quality of life for people with dementia • Theoretically and methodologically impossible? • Memory, reasoning and speech and language difficulties • Assumptions and interpretations • Traditional structured-interview or self-completion questionnaires?

27. Why measure quality of life? • Clinical trials of clinical interventions • ‘Technology assessment’ of dementia care services • Evaluation of the new culture of dementia care

28. Key contestations about quality of life measurement • Theoretical relevance ignored • Terminology used interchangeably • Disagreement about ‘domains’ and standards • Pressure to generate and use generic ‘off the shelf’ measures

29. Normative approach • Values of younger, white, middle class, often male professionals • Criticised as being ‘value-laden’ and ‘pigeon-holing’ responses • Generic or disease specific • Focus on functional limitation

30. Measurement instruments • Albert, S et al (1996) • Brod, M., Stewart, AL, Sands, L Walton (1999): D-QoL • Logsdon R, Gibbons, LE, McCurry SM, Teri L (1999): QoL-AD • Selai, C and Trimble MR (1999): QoLAS • Smith, S.C et al (2005): DEMQoL

31. Psychosocial outcomes for people with dementia • Anxiety/Depression • Loss of self esteem • Stigmatisation • Loss of autonomy • Loss of personhood • Admission to long-term care

32. Involving people with dementia in selection of outcome measures • Identify outcomes that are important and relevant to people with dementia • Identify existing measures of these outcomes • Test suitability of existing measures

33. Key messages • Quality of life is an unhelpful concept in evaluation research • Traditional health-related quality of life measures unsuitable for people with moderate to severe dementia • Need to involve people with dementia in the choice of important and relevant outcomes

35. Contact information • Tel: (+44) 191 222 6777 (Direct Line) • Fax: (+44) 191 222 6043 • E-Mail: john.bond@ncl.ac.uk • Web Page: http://www.ncl.ac.uk/chsr/