“I’m still the same person, I still like doing what I’ve always liked”

1. “I’m still the same person, I still like doing what I’ve always liked” Manifestations of continuity in experiences of change in dementia Kritika Samsi, Researcher, King’s College London part-time PhD student, Institute of Psychiatry

2. Outline of presentation • Introduction / Background • Study design and Research questions • Methods • Participant characteristics • Findings • Conclusion

3. Background • Dementia • Long-term progressive condition • Deteriorating memory • Other cognitive problems: reasoning, orientation, communication skills, fluctuating insight & etc. • Quality of life (QoL) is: • Multidimensional • Includes objective + subjective elements • Includes positive + negative aspects • Is dynamic in nature • Interest in QoL in dementia increasing for 2 reasons: • Outcome measure in ‘anti-dementia medication’ trials • In absence of a cure, maintaining and alleviating QoL is crucial

4. Change in QoL in dementia • Management & coping in studies of change • Preoccupation with coping strategies, alongside perception of ‘threat’ of dementia • Self-protective / Self-integrative strategies (Clare L., 2002) • Maintenance of equilibrium & continuity?

7. Research Questions • Primary: What is the experience of change in quality of life in dementia, from the perspectives of people with dementia and carers? • Secondary: How is change in quality of life in dementia managed?

8. Methods – Data collection • People with dementia recruited from CMHTs • Received diagnosis in last 6 months • In-depth interviews in private confidential settings • Generally in people’s own homes, where they felt most comfortable • Interviews tape-recorded and transcribed verbatim • Extensive field notes were written after the interview

9. Methods – Data analysis • Followed IPA procedures of data analysis • Descriptive themes were first identified based on repeated readings • Interpretative themes related to themes with latent or hidden content • Relationships between descriptive level themes were sought • Accounts by people with dementia and carers not compared or verified • 2 perspectives shedding light on the same phenomenon

10. Reflexivity • Young Indian woman, mid 20s when interviews were conducted • Previous contact with participants: • Visited and interviewed twice before; familiar with researcher • Life-stories and biographical information already been shared • However, none of the shared life stories had been recorded formally by the researcher

11. Participant characteristics • Nine people with dementia and nine carers • Ages: • 71 – 80 years old = 3 people with dementia • 81 - 90 years old = 6 people with dementia • Gender: • Five men, four women • Most appeared to have been independent, self-sufficient, hard working individuals in their youth • Some appeared to struggle with change retirement had brought with it • Carers included four adult children carers and five spouses; there was a majority of females across all caring relationships

12. Findings • Largest interpretative theme: presence of continuity amidst change • People with dementia appeared to fall into two groups • Those who experienced ‘continuity’ • Those who did not; hence labelled ‘discontinuous’

13. Main sub-themes • Descriptions of change alongside continuity • Management of change • Support from carer (& attitude towards support) • Coping strategies • Coping styles

14. Change vs Continuity 6 people with dementia: ‘continuity’; • Little change in their lives • Daily lifestyle as still carrying on • Described elements of change as insignificant to sense of self • Positive attitude to change Estelle: Well, I used to work and so that has all stopped. But because of my health and my diabetes, there hasn’t been too much of a change, if that’s what you mean. I’m still the same person, I still like doing what I’ve always liked and so there hasn’t been that much of a change.

15. Marion: No not that I am aware of as I am being looked after so well you know. If I was on my own I might get in a bit of a pickle, you know, forget to order food or something like that but I’m so lucky with my daughter, it seems to go OK, yes I’m very fortunate. [further in the narrative] Interviewer: Have your memory problems affected you as a person? Marion: Not really, no, not when you’re living with a family, they do it, you know they always see that I am properly dressed for going out, got the right shoes on you know, they are very kind, very good.

16. Change vs Continuity 3 people with dementia: ‘discontinuity’; • Perceived significant change • Discussed lifestyle in the past with a sense of finality of having come to an end • Felt impact of dementia quite significantly, especially in relation to sense of self Frederick: … what it is… I’ve always been quicker, quick on the uptake, so you see, so I always think well, you know, I should still be… I feel like an idiot now, I used to be pretty high up in the company I used to work for, and then I had to stop working.

17. Grace: I’ve reached old age and I don’t know what to do with myself because I was always a busy person. Now I’m sitting on my bum doing nothing and I get worried sometimes because it’s not normal.

18. Management of Change: Support from carer ‘Continuity’ • More likely to perceive support from their relative in a positive way • See themselves as autonomous to it • Felt they could rely on carer for anything • Described ‘support’ rather than ‘dependence’ David: I used to swim quite a bit, like you know, I don’t do that now cos it’s going on my own, they [referring to family] don’t like me going on my own so I thought to myself well for what I do now, you know I am 80 and I don’t do much now. Once upon a time I was very keen to give it all in but now I’m, I’m 80 and as I say I think I’m lucky. [further in the narrative] David: You’re right, sometimes I’m alone but not very often, I’ve got… they [family] are always at hand, anything, I’ve just got to pick up the phone and someone you know would be there, I consider myself very fortunate, that’s the way I feel about it.

19. Management of Change: Support from carer ‘Discontinuity’ • More likely to perceive dependence on carer • Negative reaction to support • Deteriorating autonomy, & feeling frightened of potentially growing dependence Interviewer: What kind of things does he do for you? Lisa: Well, whatever I ask him to do or whatever he thinks, I sometimes think he helps me quite unnecessarily because I can cope, but he’s inclined to be a bit demanding. Interviewer: How does that make you feel? Lisa: I used to be very annoyed with him, but now I’ve come to accept that because I need all this help. If I reject his help then I just don’t think I would function sometimes, I get afraid.

20. Management of Change: Coping styles & Coping strategies • Differentiated on the basis of whether they have been taken on consciously or not • Coping strategies: intentionally adopted to manage or incorporate dementia change in everyday life • Coping styles: innate characteristics & habits, such as personality style, attitude to life, resilience

21. Self-protective / Self-maintaining: • Minimization • Focusing on positives • Social comparison Continuity • Self-integrative / Self-adjusting: • Re-prioritization • Goal reordering • Compensation • Acceptance Management of Change: Coping strategies ‘Continuity’: mix of self-protective strategies and self-integrative strategies

22. David: I don’t take a lot of notice of it like, just gone on, as I say I consider myself well looked after by the boys, especially by Jonathan, so uh… I dunno… I can’t say anything, I can’t exercise and do what I would like to do and like… you just have to give up some things, don’t you? As I say I always feel healthy, I feel at peace, no colds or headaches or anything like that. General things a lot of people my age suffer with, I don’t seem to suffer anything like that, I seem to be fine, I’m lucky.

23. Coping styles: • Personality and resilience • Normalization • Contributing to society • Reflecting on the past • Biographical references Continuity Management of Change: Coping styles ‘Continuity’: greater variety of natural coping styles

24. Ian: … there’s a slowing, slowing up process that’s going on all the time, and it’s going to get worse in a way, the older I get the slower I become. Anyway, I have accepted my limitations and I enjoy life and fortunately I’ve got a wife who looks after me, I’m very lucky, so that’s my situation.

25. Self-protective / Self-maintaining: • Avoidant • Resignation Discontinuity • Self-integrative / Self-adjusting: • Use of memory aids Management of Change: Coping strategies ‘Discontinuity’: tended to use strategies that produced negative or less positive reactions

26. Frederick: … oh, I did do one thing and that’s when I’m trying to remember the name of the street we’re on. Everything around here [ref. to the roads in the area around his house] starts with “Wood” so that’s easy and then to remember “Woodside” I worked out that Gilbert from Gilbert and Sullivan is W.S.Gilbert so all I had to think about is “Gilbert” so I say (to myself).. When they say to me “what’s the name of your road?”, I just have to think “Musician that I like?” “Woodside road” and that’s how I learn that.

27. Coping styles: • Reflecting on the past • Biographical references Discontinuity Management of Change: Coping styles ‘Discontinuity’: very limited amount of coping styles (reflecting poor coping in the past?)

28. Grace: Life is still the same, but I can’t mix in and do things what I used to do. I did paintings, I’ve done lots of things. I used to be a painter, no, there is no life for me anymore, I just have to exist and I’m not very happy about it, believe me, I was a very busy person, I loved moving about.

29. Implications? • Relevance of Continuity theory to understand change and management in dementia • External continuity: lifestyle, abilities and social contacts • Internal continuity: personality, attitude to life and innate characteristics and pleasures

30. Implications? • Relevance of Continuity theory to understand change and management in dementia • External continuity: lifestyle, abilities and social contacts • Internal continuity: personality, attitude to life and innate characteristics and pleasures May deteriorate Can be maintained and enhanced

31. Relevance to interventions and quality of life in dementia • Reminiscence therapy and noting personal history already prevalent in clinical care • Continuity theory formalize approach to explicate link between personal history and impact on QoL in dementia • Current psychological tests indirectly assess retained cognitive level • Perhaps self-hood lies ‘below the threshold of cognition’ (Kontos, 2004), important determinant of individual well-being

32. Thank you! Kritika Samsi k.samsi@iop.kcl.ac.uk