Participation as means for adaptation in dementia: a conceptual model

Figures & data

Table 1. Sample characteristics, people with dementia (n = 12).

	Frequency	%	Mean	SD	Range
Gender
Male	1	8.3
Female	11	91.7
Marital status
Married	4	33.3
Widowed	7	58.3
Divorced	1	8.3
Household circumstances
Living alone	6	50
Living with partner	4	33.3
Household of three	2	16.7
Source of informal support*
Spouse	4	42
Adult children	7	58
Use of formal services**
Home Care	7	58.3
Day Services	8	66.7
Diagnostic group
Alzheimer’s Disease	7	58.3
Unspecified Dementia	3	25
Mixed	2	16.7
Severity of dementia
Mild	8	66.7
Moderate	4	33.3
Age (years)			84	5.37	77–93
Time at current address (years)			48	9.98	27–62
SIMD (quintile)			2.75	.62	2–4
Time from onset to diagnosis (years)			3.25	2.92	0–11

*Total number < 12 as one of the participants lives alone and does not receive any informal support.

**Total number > 12 as some participants receive both forms of support.

Table 2. Sample characteristics, family members (n = 19).

	Frequency	%	Mean	SD	Range
Gender
Male	5	26.3
Female	14	73.7
Marital status
Married	13	68.4
Divorced	1	5.3
Separated	1	5.3
Single / never married	4	21.1
Employment status
Full-time employment	1	5.3
Part-time employment	2	10.5
Self-employed	1	5.3
Unemployed	3	15.8
Retired	11	57.9
Voluntary work	1	5.3
Age			64.89	13.97	40 – 84

Figure 1. Adaptation through Participation model.

Table 3. Example narrative evidence.

			Narrative evidence (examples)
			People with Dementia	Family Members
Adaptive Capacity: Person	Context	History of participation and adaptation	“I’ve got knitting on the [s.l. go] now. Sometimes I just sit and do two or three rows in it and things like that you know. I’m not much a reader, never have. I was oldest of five in our family. […] I was only eight year old and my mother had to go back to work when I got old enough to put them [siblings] to school […] ‘Cause I was the oldest we all went to school together.” (Participant 4)	“[…] my mum’s never been a big reader, because from a very young age she had to do so much work. […] She does some knitting, yes, she has got knitting on the go, she just doesnae do it as much.” (Caregiver 4)
		Symptoms experience	“My mind doesn’t seem to work the same how I used to do all these things. I mean I was… I did a lot of baking, different kinds of things. I haven’t got that, I feel I haven’t got the brain now there sort of… I think the brain’s not as strong as it used to be for me to do all these things I used to do okay and I just […] I haven’t got the confidence now that went for doing these sort of things. I just didn’t want to risk it you know tackling these things that I used to do.”(Participant 4)	“A couple of times, he [participant’s husband] lost himself. He used to walk the dog and he would park the car and on one occasion a neighbour […] who has an office […] that overlooks the main road rang me, telephoned me to say that he had seen [my husband] walking our dog back along the main road, which was, in his view, quite rightly, very unusual. And I went […] and picked him up and it transpired that he had parked the car at [name of location] and then couldn’t find it. So we found the car and brought him home and that was obviously strange. But the whole picture was confused because he has macular degeneration in one eye. […] It happened again, locally in [name of town], not that long later and it was obvious that his sense of place was going.” (Caregiver 18)
		Motivation for participation	“I used to do a lot of painting. I can’t be bothered with it now.” (Participant 1) “I’ve always been interested in music and in jazz music – boogie woogie – liked the music. We used to go to symphony concerts in the [Concert Hall], you know? - which I thoroughly enjoyed[…] I: Do you still go to [Concert Hall], to concerts? R: If I’m given half a chance, yes. The problem is, getting about now. It was fine when I was able to drive. I can no longer drive. ” (Participant 6)	“if he is left alone to do things, he is well able to dress himself, very stiff and very sore with his foot, but he can do it, but he doesn’t do it if he can help it. But if I am busy and he wants breakfast in a hurry. […] R: Yes motivation.” (Caregiver 6) “She doesn’t even watch television anymore […] I don’t think she can be bothered. Most things she just can’t be bothered with. I think she can’t be bothered to have a shower.” (Caregiver 7)
		Identity	“there is a big change in me, I know that myself. And sometimes I feel I should kick myself out of it. I don’t think I can change myself back again. I: So what is the change about? What has changed? R: Well as I was saying I used to be able to go out myself and things like that. I can’t do that now.” (Participant 1) “I don’t feel much different than I did when I was young, you know, it’s just me” (Participant 11)	“she’s a strong person. She will try her hardest to overcome anything, but she’s definitely no the woman that she was, and it’s all really been since being told that she had cancer.” (Caregiver 4) “There are still tiny moments when [my husband] is absolutely the man I knew whether it’s a laugh or whether it’s a look or whether it’s whatever” (Caregiver 18). “It’s like it’s your mum, but it’s not your mum. You are looking at a stranger” (Caregiver 21)
	Mechanisms	Sense of meaning	“I’m interested in music - records, tapes and so on. Classical music and Scottish country dance music, and – I was a member of a band when we lived down in [name of town].” (Participant 6) “there’s nothing more important than your family.” (Participant 8)	“I was taking her along to the church, driving along, […] pick her up again and she’d come home and say, “God, even the minister remembered my name,” […] and, “So-and-so came up and spoke,” you know. She said, “But I can’t remember the name.” I said, “It doesn’t matter, they remember you.” (Caregiver 1)
		Sense of competence	“I: Is there anything that you can’t do anymore? R: No, not really that I cannot do. Not that I can think of. I cannot answer that. But I’m usually alright.” (Participant 3) “I can’t do a lot of things I used to could do, that’s it at the minute. I’m still (inaudible 00.14.58) still keep an interest in them but I can’t just do, I have to say that I just like to keep myself busy being, you know, what I can and that sort of thing.” (Participant 5)	“I: What kind of activities your mum does at home? R: Not a great deal, to be honest. Nothing. When she was at the first stages of Alzheimer’s she used to love knitting, so I found this knitting book. It was a wee teddy bear with tartan kilt on and what have you. I said, “Oh you can knit that for me.” Because I thought, “keep your mind going, keep your mind going” but she didn’t hardly get through the first side and she made excuses not to do it. She used to do crosswords and quizzes but doesn’t touch them any more. Tidy up that little corner, I mean, it is a very little corner and my mum thinks she has done the housework.” (Caregiver 3) “she’s not physically able to do [things] and I mean she can’t go out shopping for example because she has difficulty managing money.” (Caregiver 15)
		Sense of agency	“Well when I go to the doctor my daughter comes with me usually and I think, I’m sure she comes in with me to make sure what they’re tell me. […] If she didn’t come in with me and I was saying maybe I have to take it every two hours and it’s maybe wrong me saying that it should be every four hours you know. So my daughter always goes with me when it’s a thing like that to make sure that what they’ve said is right in case my memory’s slipped you know.” (Participant 4)	“in the garden [my mother] used to have grass and she would maintain that she could still cut this grass and she couldn’t cut the grass, she was incapable of taking the mower and cutting the grass. So my husband took it upon himself to explain this to her that he would lift all the grass and lay down pebbles so it was easily maintained. […] But when she saw this happening she was really upset because it was like losing, I think she thought she was losing control. So she’s been putting up barriers and making it difficult for me and for other people to help her.” (Caregiver 20)
		Sense of connectedness	“I used to speak in company, I am sitting quiet. I am not taking things in as well as I used to.” (Participant 2) “I suppose I find as I grow older I have fewer and fewer contacts with people who would be interested in anything I was interested in, which is drawing” (Participant 6)	“I’m 100% sure [my wife would] like to be able to recognise her grandchildren, I’m sure she would. But she can’t, just can’t. And it’s a shame because they come on [Skype] and they shout ‘Gran’, […] they shout ‘Hi.’ And she’ll just look and then she’ll walk away. She won’t even say ‘Hi’ or anything so I don’t know. That’s a hard one.” (Caregiver 16)
		Sense of self	“there is a big change in me, I know that myself. And sometimes I feel I should kick myself out of it. I don’t think I can change myself back again. […]” (Participant 1) “I think I’m quite a sociable person.” (Participant 10) “I don’t feel much different than I did when I was young, you know, it’s just me” (Participant 11)	“there […] are still tiny moments when he is absolutely the man I knew whether it’s a laugh or whether it’s a look or whether it’s whatever” (Caregiver 18) “It’s like it’s your mum but it’s not your mum. You are looking at a stranger and you are remembering how she is now with her dementia and how she’s been … it’s hard sometimes to remember the good times because now it’s just upsetting.” (Caregiver 20)
Adaptive capacity: Environment	Context	Family and important others	“No, I’m not too bad, I don’t mind and my family help me too. They’re very good, my family.” (Participant 5) “I’m still able to do most things that I need to do. With having a family you don’t need to do much. (Laughs)” (Participant 12)	“Occasionally our son takes us … well we've got two sons, one of them takes us out and we maybe have a meal, and our daughter stays in London she comes up regularly for a holiday, well it’s not a holiday for her I mean she’s working all the time, but she comes up and sees to us. Gives me a rest from doing the washing and the hoovering and things like that (laughter).” (Caregiver 5)
		Local community	“I was very lucky, yeah and I’ve always had good neighbours each side of me, I really have. [Neighbor’s name] the guy on his own when I was first not so well, he came in and he said, “Well, [Celia], if you ever need help, you ken where I am,” he said, “I’ll come, I screwed my face up, I’ll still come” (laughter), that’s [neighbour’s name] that’s his style. (Laughter) I’ve got very good neighbours. I really have.” (Participant 11)	“Unfortunately once the dementia kicked in a lot of [my mother’s] close friends found it really difficult to visit, so that just didn’t happen. […] my mum had lots of friends in the village and out with the village, but no. I don’t know if they are just frightened or didn’t know what to say.” (Caregiver 21)
		Formal services	“I was worried about it [about involving services] at first. But they have been so nice, they really have been so nice. Just how much they cared and nice about it, you know. I didn’t feel I was a right old person, I felt good.” (Participant 2) “I contacted the doctor originally about my memory and he advised me just to forget about it, to leave it, not to worry about it. That it would come right in its own time. I didn’t know whether I believed that or not but I was willing to go along with that. But I found I was forgetting – as I say, what day it was, what time of day it was. […] He made light of it, I felt. […] I was a bit disappointed at his reaction.” (Participant 10)	“as soon as she was diagnosed all the doors opened, which was wonderful. […] but it was too late because she needed the stimulation before that. […] And then what’s been lost can’t be regained.” (Caregiver 7) “I know they have to test their, you know to see what their level of dementia or Alzheimer’s is but my mother finds it totally distressing you know when they ask all these questions about who’s the Prime Minister? What’s his name? […] There must be some other way that they can gauge the severity of the dementia because that, for somebody that finds it difficult to communicate - she just totally switches off.” (Caregiver 15)
	Mechanisms	Adequacy of support	“[my husband] always wants to make up the meals. So I always do the washing up and all that sort of thing. So that is what we do. He does the cooking and I do the cleaning.” (Participant 1) “I: […] Are there things that are more difficult for you to do now? R: I don’t know. Yes I dare say I could do them but then [my daughter] as I say does the hoovering and that. [My other daughter] does the washing, does the shopping. I’ve done bits of shopping. They don’t get things that I want … yeah. Otherwise I don’t know.” (Participant 8)	“If she [participant’s wife] wants to clean the windows […] if she wants to do something I’ll let her as long as it’s nothing to do with the cooker, you know. Fair enough it’s electric, but it takes a long time for the hot plate to cool down.” (Caregiver 1) “[…] mum is forgetting how to do things because there's a lot of people now coming in who are doing things for her and she says she's forgotten how to use the washing machine.” (Caregiver 10)
		Social attitudes	“R2: Doctor [name], she is always saying – R: “I think now you should tell some of your friends”, I just couldn’t get round to that you see. So this was just a day, that was a week ago? R2: Last Saturday. R: And we went for dinner, just in [home town] and that was, I mean I was bothered about you know telling them about me. I didn’t want to tell anybody until I had to. […] And [having told them] I enjoyed my night, I did.” (Participant 2 and Caregiver 2; joint narrative)	“he likes people to talk to him. And people don’t talk so much now to him because they think he doesn’t understand but he understands very well, very well indeed. And because he doesn’t always answer doesn’t mean to say he is not interested.” (Caregiver 6)
		Consistency of routine, people and places	“I used to be able to go out myself and things like that. I can’t do that now. And it used to be quite the thing to just go out along the road, get the [shopping] and come back.” (Participant 1) “I go out into the garden, I can sit, I watch people go up the path and up the street” (Participant 7).	“when she’s [my mother’s] here [at home] she potters about, she’ll make a cup of tea, she’ll do things. She’ll go out into the garden, when she’s in our house she just sits and she’s got no routine. She sleeps, she won’t make a cup of tea, she won’t do anything, she just seems to switch off completely […], where here she just, she does potter about and she will go out sometimes, out to the shop and get some milk.” (Caregiver 7)
Adaptive processes and trajectories	Processes	Match: adaptive capacity of person and environment	“My mind doesn’t seem to work the same how I used to do all these things. I mean I was… I did a lot of baking, different kinds of things. I haven’t got that, I feel I haven’t got the brain now there sort of… I think the brain’s not as strong as it used to be for me to do all these things I used to do okay and I just… Well my daughter’s now not a bad baker and she’s making some jam but I haven’t got the confidence now that went for doing these sort of things. I just didn’t want to risk it you know tackling these things that I used to do.” (Participant 4) “I was just walking up and down the kitchen, I wanted to get the cooker right and I couldn’t remember what to do, and I wasn’t wanting to tell him [Alan]. […] Now [Alan] does the, I put all the washing in and that but he just keeps, he wants to see that things are right with the cooker.” (Participant 2)	“she [my mother] used to go to the Women’s Rural Institute okay and she actually said to me “I have to stop going because I can’t keep up with the conversation.” If there’s more than one person talking she’s lost so she stopped going to that. I think that’s when she realised that you know the dementia was getting worse so she just gave that up altogether.” (Caregiver 15) “[My mother] done a lot of sewing. She has three sewing machines and people used to bring sewing for her. […] And she loved doing that but her eyesight got that she couldn’t do it. And before she stopped doing it I had to do them over again for her. […] so when she did go into hospital when she broke her hip, we [family] put them [sewing machines] away in the cupboard and she wasn’t happy. […] because she […] would have her machine out for a whole day doing all this sewing but once she’d finished them she didn’t know who they belonged to. […] And that’s what passed her time, her sewing passed her time.” (Caregiver 8)
	Trajectories	Maintaining continuity	“You have got to keep yourself going” (Participant 2) “I used to love doing my garden I really did but that’s beyond me now but I can still get bits done, you know, I love the garden” (Participant 11)	“I take her out to [nearest city] quite a bit, and you know, sometimes that’s with one of her sisters I take as well, or we go to Dobbies, or we go to [local town] for lunch or something like that, you know. She still has a friend that comes about every two weeks to see her that she’s been friendly with since she was 19. (Caregiver 4)
		Ongoing adjustment	“I used to wash maybe only once a week but now I do it two or three times in a week and I’ve got a wee washer, you know, aye, and I’ve stopped putting it [the washing] out because it’s quite a lot to get out with one hand so I just do it all in the house now. Because it’s just wee and can get heat, so that’s how I do my wash, my bedroom, my bed, it’s one only and nothing else in that washing it’s my bed, you know. I: So you do it in stages? R: Oh, aye, yeah.” (Participant 11)	“you’ve just got to make adjustments to your life, you know” (Caregiver 1)
		Struggle	“Nothing wrong with it [my memory]” (Participant 7)	“[…] she doesn’t think there’s anything wrong with her memory, […] she says “My memory’s fine.” And she gets rattled.” (Caregiver 7) “[Home care staff] are supposed to encourage her and try and get her to have a shower every morning […] And she needs to shower on a daily basis and she won’t.” (Caregiver 7)
		Withdrawal	“I used to speak in company, I am sitting quiet. I am not taking things in as well as I used to.” (Participant 2) “I: […] could you describe your typical day to me? R: Lying on the settee and I have a sleep. I: What else do you do during the day? R: Not a lot. I: Not a lot.” (Participant 7)	“I was very worried about him because he had increasing inertia. Now he was a very, very active man, he walked for miles, he is still very physically fit. […] And not suddenly, but gradually, he became less and less interested in all of this. And sat more than I’d ever known him in nearly 50 years of marriage” (Caregiver 18) “when he’s really distressed he just goes to sleep, sometimes deliberately and sometimes I think just he’s had enough. And so, everything shuts down” (Caregiver 18)