Introduction
Methods
Setting and participants
Procedures
Data analysis
Results
Study participants
Characteristics | n (%) or mean (SD) | |
---|---|---|
Age | 78.6 (7.8) | |
Gender | Female | 5 (45.5) |
Male | 6 (54.5) | |
Ethnicity | White British | 8 (72.2) |
White other Other - Asian | 1 (9.1) 1 (9.1) | |
Other Mauritian | 1 (9.1) | |
Marital status | Married/with partner | 4 (36.7) |
Single | 3 (27.3) | |
Divorced | 1 (9.1) | |
Widowed | 3 (27.3) | |
Living arrangements | Lives alone | 5 (45.5) |
Lives with relatives | 6 (54.5) | |
Type of dementia | Alzheimer’s disease | 3 (27.3) |
Vascular | 2 (18.2) | |
Other | 2 (18.2) | |
Not specified | 4 (36.7) | |
Time since diagnosis | 1–3 years | 4 (36.7) |
3–5 years | 2 (18.2) | |
5–10 years | 1 (9.1) | |
Not specified | 4 (36.7) |
Characteristics | n (%) or mean (SD) | |
---|---|---|
Age | 57.7 (14.3) | |
Gender | Female | 12 (54.5) |
Male | 10 (45.5) | |
Ethnicity | White British | 9 (40.9) |
Indian | 6 (27.3) | |
Bangladeshi | 4 (18.2) | |
Other | 3 (13.6) | |
Marital status | Married/with partner | 13 (59.1) |
Single | 5 (22.7) | |
Divorced | 3 (13.6) | |
Widowed | 1 (4.5) | |
Employment | Retired | 9 (40.9) |
Part time | 5 (22.7) | |
Unemployed | 3 (13.6) | |
Other | 3 (13.6) | |
Full time | 2 (9.1) | |
Relationship to person with dementia | Son/daughter | 11 (50) |
Husband/wife/partner | 6 (27.3) | |
Niece | 2 (9.1) | |
Friend | 1 (4.5) | |
Sibling | 1 (4.5) | |
Daughter-in law | 1 (4.5) | |
Living with person with dementia | Yes | 15 (68.2) |
No | 7 (31.8) | |
Type of dementia | Alzheimer’s disease | 8 (36.4) |
Vascular | 4 (18.2) | |
Other | 4 (18.2) | |
Not specified | 6 (27.3) | |
Length of time caring for relative | 1–3 years | 8 (36.4) |
3–5 years | 2 (9.1) | |
5–10 years | 2 (9.1) | |
10+ years | 5 (22.7) | |
Not specified | 5 (22.7) |
Characteristics | n (%) or mean (SD) | |
---|---|---|
Age | 41.4 (10.9) | |
Gender | Female | 13 (68.4) |
Male | 6 (31.6) | |
Ethnicity | White British | 9 (47.4) |
White other | 5 (26.3) | |
Indian | 2 (10.5) | |
Other | 3 (15.8) | |
Professional role | Commissioner | 3 (15.8) |
Social worker | 2 (10.5) | |
Dementia lead | 2 (10.5) | |
Service manager | 2 (10.5) | |
Psychologist | 2 (10.5) | |
Support worker | 2 (10.5) | |
GP | 2 (10.5) | |
Geriatrician | 1 (5.3) | |
Nurse | 1 (5.3) | |
Physiotherapist | 1 (5.3) | |
Psychiatrist | 1 (5.3) | |
Time working in dementia care | 1–3 years | 1 (5.3) |
3–5 years | 5 (26.3) | |
5–10 years | 5 (26.3) | |
10+ years | 8 (42.1) | |
Personal experience of dementia | Yes | 12 (63.2) |
No | 7 (36.8) |
Qualitative findings
Overarching theme | Sub theme | Stakeholder contribution | Notable differences and tensions between stakeholder groups | ||
---|---|---|---|---|---|
PLWD | FC | HSCP | |||
1.1. Being in a safe and familiar environment | 1.1 Adapting the environment | x | x | x | Family carers focus on reducing the risk of potential harm within the home vs PLWD and professionals promoting adaptations to enhance functioning at home and outside. Family carers want to support relatives to remain independent but fear negative consequences and may act to protect or reduce potential risk by imposing constraints. This negatively impacts on the independence of PLWD. |
1.2 Balancing autonomy and minimising harm | x | x | x | ||
1.1.2. Enabling not disabling care | 2.1 Building on preserved abilities | x | x | All stakeholder groups described the importance of an ‘enabling’ approach and PLWD living well. As they would like, at home. Professionals have a clear idea of why and how this can be done however for family carers, this can be difficult to enact and requires them to tread a fine line and with a potentially disabling consequence for the PLWD. | |
2.2 Supporting without undermining | x | x | |||
2.3 Families want to protect and care | x | x | x | ||
1.1.3. Maintaining relationships and community connectedness | 3.1 Making a contribution vs not being a burden | x | x | x | Having varied and positive relationships both within and outside of the family and home was promoted across groups. PLWD described the impact of dementia and the stigma connected to the disease as barriers to staying connected and feeling useful, whereas families described the complexities both practically and emotionally of supporting relatives to stay connected. The impact of dementia itself and the consequence of having to do more for relatives left family members and PLWD describing negative changes in their relationships and roles. Professionals acknowledged and could account for these changes but not what to do about them. |
3.2 Getting out and about | x | x | x | ||
3.3 Changing roles and relationships | x | x | x | ||
1.1.4. Getting the right support | 4.1 Difficulties in accessing services | x | All stakeholders felt that formal and informal support network were important but for family members, they were often caught between trying to navigate often inaccessible services and their relative’s reluctance to accept additional support. PLWD described how accepting additional support could undermine their independence and they worried about burden on their relatives. Professionals, although recognising their role in addressing different needs of carers and PLWD, frequently described trying to educate or persuade the carer about how best to respond. | ||
4.2 Balancing different needs | x | x | |||
4.3 Reluctance to accept support | x | x | x |
Being in a safe and familiar environment
Professionals’ narratives focussed on avoiding the potential problems triggered by unfamiliar environments.The familiarity of being here of having her own things about her. She's always loved her bedroom and loved having her little possessions around her and pictures and her art work (FC-Sibling, lives with relative)
It's horrible to be taken into an alien environment, I think there's a real tension a lot of the time around how that works. Recognising, the value of people being in familiar environments, with the destructive nature of unfamiliar environments. (HSCP-Commissioner1)
And then I caught on, I’ve got to have everything eye level. I can’t look down on anything. And because that was on the table and I’m looking down on it, I couldn’t work it… I’ve got to set it now on top of the toaster. (PLWD-Male1, lives alone)
In contrast, family carers mostly discussed adaptations to the home environment designed to reduce risks of harm or increase safety, particularly when the person with dementia lived alone, which may ultimately reduce autonomy for the person living with dementia.We recently painted the toilet doors bright yellow so that people can find them and don’t get lost. They can go to the toilet on their own and that is a massive difference. (HSCP-Physiotherapist)
While for families, decisions were individual, personal and complex, professionals described rights-based approaches, and policy-based decision-making, documented and shared with families. They drew upon professional expertise to reinforce the need for risk to be tolerated and managed. In this way, their position was more aligned to that of people living with dementia but did not always acknowledge the complex position faced by family carers.Family members sometimes have to sit back and just let the other person make mistakes…That's a disparity, it's clear and it does cause tension, it does cause anxiety and I don't think one could get rid of that (FC-Niece, does not live with relative)
People living with dementia lived with the consequences of this tension, where decisions may be taken by family which are counter to the person’s wishes or preferences.Because I think families just automatically see risk don’t they? But we can do managed risk. There’s lots of things we can put into place now. (HSCP-Physiotherapist)
If I'm alright and I feel good for myself I have to go. But they [family] will not let me go in case something happens outside. That’s the only reason that I can't go anywhere. (PLWD-Female1, lives alone)
Enabling not disabling care
Although there was agreement that this approach was key to promoting independence, for family carers there were challenges to enacting this approach and very real consequences for people living with dementia who described the disabling effect of other people doing activities for them.If we promote facilitative models, there will be…Still be some people who become very disabled by their dementia…But there’ll be a much more significant proportion for whom it’s a condition that they are able to manage. (HSCP-Dementia lead)
Although family carers shared this view, they struggled to put it into practice and perceived that professional advice often overlooked this reality.Say the bloke has developed dementia, the wife will start doing it and, no, no you can’t do that…And she’ll go and do it, and then he’s sitting there. And it finishes up he’s going to forget because he’s not doing it. (PLWD-Male1, lives alone)
The nurses have said you should get up every hour and move about but to get her motivated to do that, if I try and get her to do things, I'm nagging. (FC-Sibling, lives with relative)
Unsurprisingly, this was a more personal process for family carers who described adapting existing relationships and using knowledge of their relative to inform their approach.I took her to this church service and it was her leading me because this is what she knew very well. She was telling me stand up, sit down, hark, sing… And it was just a whole transformation because we were actually working with her skills. (HSCP-Manager)
Professionals held a more detached position, talking more about giving people with dementia space to complete tasks, letting people know support was available if needed. This connected with being able to take a different position in relation to perceived risks, ultimately they were able to privilege their roles as facilitators rather than simply as protectors.I don’t want to cramp her style. I let her have the independence. But when she comes I don’t make it obvious to her. I go inside and make sure everything is switched off, and if it’s not, I switch it off, but I don’t tell her about it, because you don’t want to embarrass somebody. (FC-Husband, lives with relative)
I think it’s essentially, especially if they’re on their own, but it’s essentially knowing that there’s some help and support there if needed. (HSCP-Commissioner2)
Professionals and people with dementia recognised this commitment but also worried it could have a paradoxically disabling effect, suggesting that in taking this protective position they inadvertently undermine independence.There's a time when you bully your family members into doing things, because you know that it's best for them. (FC-Niece, does not live with relative)
It’s for the kindest of reasons, it really is, but it’s not; it’s the worst thing in the world that you [family] can do…they had trouble seeing that until I explained the consequence. (PLWD-Female2, lives alone)
Family members take over and I’m sure they do with the best will in the world. But because, you know, they’re worried and because they take over that person then loses their skills and they deteriorate more rapidly. (HSCP-Manager)
Maintaining relationships and community connectedness
Professionals suggested that, where possible, time away from family could support independence.He had a phone call last night from his ex-neighbour. Before I gave him the phone I had to, and I did tell the neighbour, I’ve done it before, I said, I’ll just tell him. I had to explain who this was, where he was, and then you could see the, oh okay. It’s like a deck of cards falling into place. (FC-Son1, lives with relative)
Although some people with dementia spoke about engaging in social interaction as an outward sign of functioning, a way to show “dementia’s not beaten you” (PLWD-Male1, lives alone), they also described dementia symptoms and stigma surrounding the diagnosis as barriers to socialising. Some found interactions linked to another aspect of their identity, such as a hobby or occupation, easier.Yes, we kind of felt the best way for her to be independent would be through socialising maybe, a little bit away from the family. She was quite social once you gave her the time and allowed her, I guess, the space and the patience to be able to find the words. (HSCP-Psychologist)
I go around talking to people, vapers, and we’ll try and explain what liquids, what coils we’re building. The funny thing is that the majority of them [vapers] know I’ve got dementia, but they still treat me as an equal. They don’t frown on you, they don’t push you to the side. (PLWD-Male1, lives alone)
When this was not possible, when they were not able to ‘support without undermining’ or protect their relatives from the impact of dementia, family members were conscious of the emotional impact upon their relatives and the distress this caused for themselves.Because I can’t imagine anything more horrible than losing…that sense of being reliant on other people doing. (PLWD-Female2, lives alone)
She goes, oh, I'm still the mother. You know, she doesn't want to come to us crying saying that. She'll get angry at us, saying, oh, this and that, but she doesn't want to show you that she's weak. (FC-Son2, lives with relative)
Professionals’ accounts did not reflect this complexity. Getting out was perceived as essential to an enabling approach. People living with dementia described how the stigma surrounding dementia influenced other peoples’ responses.But my parents are so poorly, that they physically need help getting ready first of all, then holding their hands, getting them to that vehicle, they will get lost just from here to downstairs. (FC-Son3, lives with relative)
They also described fear resulting from dementia symptoms and the desire to overcome this to continue going out.They always insist I get on the bus first. They always ring the bell for me coming home to make sure I’m getting off, but none of them will mention the word dementia. They won’t, because it’s that fear again, even though they see me and I have dementia; they won’t say the words. (PLWD-Female2, lives alone)
When I started realising what was happening with it, with the ground, with me, it was moving, I was actually, battle myself because I started to feel I’m not going out. And then I thought, well hold on, I’ve got it in my head if I don’t go out, dementia sets in. (PLWD-Male3, lives with family)
People living with dementia also raised this in their accounts, aware of the changes in status and discussing the personal impact of this loss.I am trying not to be the dictator in the relationship. I do find myself, they always say you find yourself talking as your parents used to talk when you were a child, and I find that quite ironic. I am now “the parent”, in inverted commas, giving my father instruction. (FC-Son1, lives with relative)
A number of professionals commented upon this changing dynamic, and sometimes linked it to abuse. Although they could account for and explain these difficulties, they tended to empathise with the position of the people living with dementia, and their need for protection, overlooking the family carers potential need for support.I used to be her boss. It’s changed. (PLWD-Male4, lives with family)
So if the relationship hasn't been healthy, and the attachment's quite poor, from the adult to the child… The person, the parent has, say, dementia, can often flip the power dynamics that just doesn't…It's not right. And it can… It is abusive. (HSCP-Social worker)
Getting the right support
They described support as contingent on deterioration, rather than services promoting a more proactive, preventative or enabling approach.In terms of picking up on the signs, advising family members, getting things moving. If I hadn’t pushed; if I hadn’t fought, you know, I made a real nuisance of myself, in order to get things going. (FC-Son4, lives with relative)
It’s not like I want [PLWD] to deteriorate more so that I can say oh, now they qualify for these people and finally I can pay them. I don't want that. I don't want them to become worse (FC-Son3, lives with relative)
Often the professionals would privilege the perspective of the person with dementia, and seek to educate or change the perspective of family carers.I definitely think that it shouldn’t be just about the carer. Because sometimes I find that what the carer’s problem, issue, concern, whatever you wish to call it, isn’t necessarily bothering the person with dementia. (HSCP-Support worker1)
Family carers spoke extensively about the challenge of balancing their own needs against those of their relative when promoting independence.I say no leave him because to him he’s happy with that you know and he’s tried, he’s been independent doing that. Yes but…does it matter? Confrontation is just not worth it you know? (HSCP-Support worker2)
So then I won’t be able to work, and I worry about my work. Will they sack me because I’m taking too many time off and I don’t come back to work? (FC-Wife, lives with relative)
People with dementia spoke of their reluctance to accept care. Although support was intended to promote independence, the act of accepting support was itself a sign of dependence that they resisted.You do need help mum. I say to her: I can't do this anymore, you know? I can only do what I can. (FC-Son5, lives with relative)
People living with dementia described how they would minimise demand on their family members by not asking for help, sometimes at personal cost.The doctor was getting my tablets into blister pack, or whatever they call. I didn’t like it because this means that it’s so easy…I didn’t want it. I said to the GP, I want to use my brain and just give my tablet with a pack (PLWD-Male2, lives with family)
If possible I don’t want them not to go to work because they have their own family. So I just wait or tell them that after they're finished they have to come here. (PWD-Female1, lives alone)