Im still the same person I still like

“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 Ph. D student, Institute of Psychiatry

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

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

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

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

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

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

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

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

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

Participant characteristics l l Nine people with dementia and nine carers Ages: l 71 – 80 years old = 3 people with dementia l 81 - 90 years old = 6 people with dementia Gender: l Five men, four women Most appeared to have been independent, self-sufficient, hard working individuals in their youth l l 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

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

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

Change vs Continuity 6 people with dementia: ‘continuity’; l l 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.

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, 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.

Change vs Continuity 3 people with dementia: ‘discontinuity’; l l l 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.

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.

Management of Change: Support from carer ‘Continuity’ l l 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.

Management of Change: Support from carer ‘Discontinuity’ l l l 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.

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

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

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.

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

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.

Management of Change: Coping strategies ‘Discontinuity’: tended to use strategies that produced negative or less positive reactions Self-protective / Selfmaintaining: ·Avoidant ·Resignation Discontinuity Self-integrative / Selfadjusting: ·Use of memory aids

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.

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

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.

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

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

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

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