“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
presence of continuity amidst change
6 people with dementia: ‘continuity’;
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.
3 people with dementia: ‘discontinuity’;
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.
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.
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.
‘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.
‘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.
‘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.
‘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.
Can be maintained and enhanced