im still the same person, i still like doing what ive always liked manifestations of continuity in...
TRANSCRIPT
“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?
Overall study design
Quantitative:How does QoL in dementia change?
Qualitative:What is the
experience of change in QoL?
Baseline assessment
In-depth interview6 month follow up
assessment
Overall study design
Quantitative:How does QoL in dementia change?
Qualitative:What is the
experience of change in QoL?
Baseline assessment
In-depth interview6 month follow up
assessment
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
Management of Change: Coping strategies
‘Continuity’: mix of self-protective strategies and self-integrative strategiesSelf-protective / Self-
maintaining:
MinimizationFocusing on positivesSocial comparison
Self-integrative / Self-adjusting:
Re-prioritizationGoal reorderingCompensationAcceptance
Continuity
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 resilienceNormalizationContributing to societyReflecting on the pastBiographical 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 / Self-maintaining:
AvoidantResignation
Self-integrative / Self-adjusting:
Use of memory aids
Discontinuity
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 pastBiographical 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?
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
