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Im still the same person, I still like doing what Ive always liked Manifestations of continuity in experiences of change in dementia Kritika Samsi, Researcher,

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Presentation on theme: "Im still the same person, I still like doing what Ive always liked Manifestations of continuity in experiences of change in dementia Kritika Samsi, Researcher,"— Presentation transcript:

1 Im still the same person, I still like doing what Ive always liked Manifestations of continuity in experiences of change in dementia Kritika Samsi, Researcher, Kings 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?

5 Overall study design Quantitative: How does QoL in dementia change? Baseline assessment 6 month follow up assessment Qualitative: What is the experience of change in QoL? In-depth interview

6 Overall study design Quantitative: How does QoL in dementia change? Baseline assessment 6 month follow up assessment Qualitative: What is the experience of change in QoL? In-depth interview

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 peoples 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 hasnt been too much of a change, if thats what you mean. Im still the same person, I still like doing what Ive always liked and so there hasnt 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 Im so lucky with my daughter, it seems to go OK, yes Im very fortunate. [further in the narrative] Interviewer: Have your memory problems affected you as a person? Marion: Not really, no, not when youre 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… Ive 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: Ive reached old age and I dont know what to do with myself because I was always a busy person. Now Im sitting on my bum doing nothing and I get worried sometimes because its 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 dont do that now cos its going on my own, they [referring to family] dont like me going on my own so I thought to myself well for what I do now, you know I am 80 and I dont do much now. Once upon a time I was very keen to give it all in but now Im, Im 80 and as I say I think Im lucky. [further in the narrative] David: Youre right, sometimes Im alone but not very often, Ive got… they [family] are always at hand, anything, Ive just got to pick up the phone and someone you know would be there, I consider myself very fortunate, thats 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 hes inclined to be a bit demanding. Interviewer: How does that make you feel? Lisa: I used to be very annoyed with him, but now Ive come to accept that because I need all this help. If I reject his help then I just dont 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 Management of Change: Coping strategies Continuity: mix of self-protective strategies and self-integrative strategies Self-protective / Self- maintaining: Minimization Focusing on positives Social comparison Self-integrative / Self-adjusting: Re-prioritization Goal reordering Compensation Acceptance Continuity

22 David: I dont 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 cant say anything, I cant exercise and do what I would like to do and like… you just have to give up some things, dont 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 dont seem to suffer anything like that, I seem to be fine, Im lucky.

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

24 Ian: … theres a slowing, slowing up process thats going on all the time, and its 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 Ive got a wife who looks after me, Im very lucky, so thats my situation.

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

26 Frederick: … oh, I did do one thing and thats when Im trying to remember the name of the street were on. Everything around here [ref. to the roads in the area around his house] starts with Wood so thats 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 whats the name of your road?, I just have to think Musician that I like? Woodside road and thats how I learn that.

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

28 Grace: Life is still the same, but I cant mix in and do things what I used to do. I did paintings, Ive done lots of things. I used to be a painter, no, there is no life for me anymore, I just have to exist and Im 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


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