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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

“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
Outline of presentation I’ve always liked”

  • Introduction / Background

  • Study design and Research questions

  • Methods

  • Participant characteristics

  • Findings

  • Conclusion


Background
Background I’ve always liked”

  • 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
Change in QoL in dementia I’ve always liked”

  • 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
Research Questions I’ve always liked”

  • 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
Methods – Data collection I’ve always liked”

  • 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
Methods – Data analysis I’ve always liked”

  • 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
Reflexivity I’ve always liked”

  • 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
Participant characteristics I’ve always liked”

  • 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
Findings I’ve always liked”

  • 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
Main sub-themes I’ve always liked”

  • Descriptions of change alongside continuity

  • Management of change

    • Support from carer (& attitude towards support)

    • Coping strategies

    • Coping styles


Change vs continuity
Change vs Continuity I’ve always liked”

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: I’ve always liked”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 continuity1
Change vs Continuity I’ve always liked”

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 always liked”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
Management of Change: I’ve always liked”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 carer1
Management of Change: I’ve always liked”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
Management of Change: I’ve always liked”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


Management of change coping strategies

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’ve always liked”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

  • Coping styles: I’ve always liked”

  • 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: I’ve always liked” … 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 strategies1

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: I’ve always liked” … 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 styles1

  • Coping styles: I’ve always liked”

  • 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: I’ve always liked”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
Implications? I’ve always liked”

  • 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


Implications1
Implications? I’ve always liked”

  • 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
Relevance to interventions and quality of life in dementia I’ve always liked”

  • 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

Thank you! I’ve always liked”

Kritika Samsi

[email protected]


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