I m still the same person i still like doing what i ve always liked
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“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. Outline of presentation. Introduction / Background

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“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


Outline of presentation

  • Introduction / Background

  • Study design and Research questions

  • Methods

  • Participant characteristics

  • Findings

  • Conclusion


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


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?


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?


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


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


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


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


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’


Main sub-themes

  • Descriptions of change alongside continuity

  • Management of change

    • Support from carer (& attitude towards support)

    • Coping strategies

    • Coping styles


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.


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.


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.


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’

  • 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’

  • 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

  • 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


  • 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


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.


  • 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


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.


  • 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


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.


  • 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?)


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?

  • 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


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


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


Thank you!

Kritika Samsi

[email protected]


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