Introduction
Aim
“What experiences do family carers of PWD have in coping with the difficult situations they face?”“What are the adaptive capacities that enable family carers to adapt to their situation?”
Design
Literature search
Quality appraisal
Data extraction
Data synthesis
Ethical approval
Results
Article. No | Author, year/Country | Sample size (M:F) | Carer age range(years) | Type of carer (n) | Employment | Caring period range (years) | Research aim | Research design | Data collection methods | Data analysis | Percentage that meets CASP |
---|---|---|---|---|---|---|---|---|---|---|---|
A1 | O’Dwyer et al., 2013 / Australia | 9 (4:5) | 25–82 (mean: 58.3) | Daughter (3), Spouse(4), Son-in-law (1), Grandson (1) | Part-time: 3 Unemployed: 5 Job seeker:1 | 0.5–11 | To conduct an initial exploration of carers’ experiences of suicidality and identify factors associated with risk and resilience, which could be used to guide further research | A descriptive qualitative study | In-depth interview | Thematic analysis | 80% |
A2 | Donnellan et al., 2015/UK | 20 (7:13) | 62–89 (mean: 76.0) | Spouse (20) | Not presented | 2–10 | To assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework | A qualitative study | In-depth interview | A grounded theory | 80% |
A3 | Donnellan et al., 2017 / UK | 23(7:16) | 62–89 (mean: 75.1) | Spouse (23) | Not presented | 2–10 | to explore social support as a key component of resilience to identify the availability, function and perceived functional aspects of support provided to older spousal dementia carers | A qualitative study | In-depth interview | A grounded theory | 90% |
A4 | Roberts et al., 2018/USA | 33(4:29) | 39–83 (mean: 65.8) | Daughter, son, daughter-in-law, son-in-law: 18 Wife: 12 Husband: 2 Sibling:1 | Not presented | Not presented | To address this major public health challenge through the lens of caregiver resilience and caregiver respite programming | A mixed-method study | Face-to-face interview | Thematic analysis | 70% |
A5 | Jones et al., 2019/UK | 13(Not presented) | 40–81 (median: 61) | Wife: 6 Son:1 Housemate:1 Daughter:2 Husband:2 Daughter in law:1 | Part-time: 2 Retired: 8 Full time:2 Not working: 1 | Not presented | (a) explore discrepancies and congruency between definitions of resilience in the academic literature and carers own conceptualisations; (b) assess differences and similarities in conceptualisations of resilience between carers with high, medium and low resilience scores; (c) compare carers’ perceived level of resilience with the level of resilience when measured on a standardized tool | A cross-sectional qualitative study | Semi-stuctured interviews | Qualitative analysis | 80% |
A6 | Donnellan et al., 2018/UK | 13(4:9) | 65–85 (mean: 75.4) | Spouse: 13 | Not presented | 3–13 | To examine trajectories of resilience and which assets and resources are associated with resilience and care status transitions in spousal dementia carers | A qualitative longitudinal study | In-depth interview | A grounded theory | 90% |
A7 | Han et al., 2019/USA | 39(9:30) | Mean:62 | Adult child:82.1% Spouse/partner:7.7% Niece:5.1% Friend: 5.1% | Full or part time job: 18 Not employed: 21 | 6 months or less—3 years or more | To identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of family caregivers of hospice patients with dementia | A theory-driven, deductive content analysis study of secondary data obtained from a clinical trial | Individual interview | Content analysis | 70% |
A8 | Conway et al., 2020/UK | 12(Not presented | Not presented | Spouse/partner: 12 | Not presented | 3 month—6 | To explore what resilience means in the context of couplehood in dementia, how dyads experience a shared sense of resilience, how they develop and maintain resilience and how this impacts upon their relationship | A qualitative study | In-depth interview | Constructive grounded theory | 90% |
A9 | Jensen et al., 2020/USA | 19(4:15) | 20 s-80 s | Child:7 Grandchild: 5 Spouse/significant other: 1 Sibling: 2 Other family member:3 Friend: 1 | Not presented | Not presented | to identify characteristics of resilience using surveys in 50 bereaved caregivers for persons with dementia who lost their care recipient in the past 6 month | A qualitative descriptive study | Individual interview | Content analysis | 80% |
A10 | Donnellan et al., 2021/UK | 13(2:11 | 47–81 (mean: 66.0) | Adult daughters: 6 Spouse: 7 | Not presented | 1–9 | To identify the factors that facilitate or hinder resilience in spousal and adult daughter carers, and whether these factors can be mapped on to ecological resilience framework | A qualitative study | Semi-structured interview | Constructive grounded theory | 90% |
A11 | Liu et al., 2021/USA | 27(6:21) | 50–89 (mean: 69.0) | Spouse: 46% Adult Children: 50% Sibling:4% | Full-time or part-time employed: 9 Retired or unemployed: 18 | Mean: 2.48 | To investigate the resilience of a growing but largely underserved and understudied population—Chinese American dementia caregivers | A qualitative study | Semi-structured interview | Hybrid grounded theory model | 70% |
Key concepts from first-and second order constructs | Sub-themes | Synthesized themes |
---|---|---|
Past good memories A1, A3, A5, A8, A9 Affection with family A2, A3, A4, A8, A10 Understanding about life of patients A2, A7, A8, A10 Sharing experiences A2, A3, A8, A10 Building trust relationships with patients A2, A4, A7, A8, A10 | 1. Building a sense of bonding based on life with people with dementia | I. Seeing life as a carer as one's duty |
Accepting the current situation A1, A2, A4, A5, A7, A8, A10 Awareness of the finiteness of the situation A1, A2, A5, A8, A9 Expressing/controlling their own emotions A1, A2, A3, A4, A5, A7 Perceiving the value of their life A2, A3, A4, A5, A7, A8 Taking the situation positively A1, A2, A5, A6, A8, A9, A10 | 2. Acknowledging their life as a carer | |
Building a sense of unity from the same carer community A1, A2, A3, A5, A6, A7, A8, A11 Getting help from their family A1, A2, A3, A6, A7, A8, A9, A10 Interacting with the community (social support) A1, A2, A3, A5, A6, A7, A8, A10, A11 Communicating with friends and neighbors A1, A2, A3, A5, A6, A7, A8, A9, A10 Receiving help from experts A2, A7, A8 | 3. Finding stable life through help from supportive relationships | II. Setting boundaries in life |
Having personal time A1, A2, A4, A5, A6, A7, A9, A11 Striving for self-development A1, A2, A7, A11 Trying to maintain one's identity A1, A2, A5, A6, A7, A9, A11 Separating themselves from patient care A1, A2, A4, A5, A6, A7, A9, A10, A11 Focusing on the present A2, A4, A5, A10, A11 Recognizing the importance of rest A1, A2, A4, A5, A6, A10, A11 | 4. Rediscovering independent life | |
Staying work life A1, A4, A6, A8, A10 Doing one’s role A4, A5, A10, A11 Taking one’s responsibility A4, A5, A10, A11 Managing their routine activities A1, A2, A5, A10, A11 Financial reward A2, A5, A6, A7, A8 | 5. Maintaining sociality | III. Moving forward towards a developing life |
Learning professional knowledge A1, A2, A5, A7 Building confidence A1, A2, A4, A5, A7 Be active in life (as a carer) A1, A2, A4, A5, A7 Developing skills and insights A1, A2, A4, A5, A7 | 6. Developing professionalism in the role of carers |
I. Seeing life as a carer as one’s duty
Building a sense of bonding based on life with PWD
We’ve been together nearly 50 years. Would I feel like this if I’d only been together 7, 8, 10?......We’re comfortable. We've been together for so long, so it couldn't be more comfortable. (A8).My dad became acutely ill with aspirate pneumonia, so that we had 5 days as a family to come together. We kept a vigil so that he was never left alone, and most of the time there was more than one of us there 24/7. We had time together individually with him and as a family. Many memories and stories were shared in the middle of the night—I cherish that time (A9).
Acknowledging their life as a carer
I’m positive. I laugh and I sing and she laughs and I act gently in the house. I’ve even talked to one of my neighbours about my singing, and she said [Mr Go.] it’s a good thing we’ve got a detached house. I sing at the top of my voice (A2).‘Doing what you can, if there's something you can't do, don't do it or do it differently. Look for the positives and don't beat yourself up (A5).
II. Setting boundaries in life
Finding a stable life through help from supportive relationships
I [got] involved somehow with advocacy [for other carers]... I quickly became empowered...and then I was actually advocating for other people, so that was one way that I coped (A1).Coming here(self-help group) has helped me because the people that come here are in the same position as I am. Some of them have been in it longer than me, so I can use their experience and I can relate to what they’re saying (A2).‘The carer group is a godsend because sometimes you’ve just got to dump and you can do it there. It makes me feel better because I know I’m not alone. Every other one of those wives is going through what I’m going through. It’s the neatest, tiredest looking group of women I’ve ever seen. We have days when we laugh and cry; it’s like this little amount of light. Without the groups, I wouldn’t have made it’ (A4).
Rediscovering an independent life
I love getting up in the morning at 5 am, going for my hour’s walk, and that’s my time ... that’s my “clear my head” time. If I didn’t have that right now, I think things would be different, but it’s just giving me that little bit more strength to think straight (A1).I’m getting a respite on weekends. I really do know the meaning of recharging my batteries now. I feel more, you know, on Monday morning right, let’s get on with the day (A2).If I feel stressed, I sing loudly when taking a shower. … I like singing old songs that were popular when I was young (A11).
III. Moving forward toward a developing life
Maintaining sociality
My brother-in-law moved her (mother-in-law) in with him to start with, but he worked during the day and I was concerned about her well-being during the day. I was afraid she was just eating Twinkies and things, not being able to prepare meals. I work from home, and I thought I could take care of her and work from home, so we brought her to our house (A4).When I am at work…..we’ll have a laugh about it (working). I think going to work helps me a lot (A10).
Developing professionalism in the role of carers
I went on the internet, looked up what medication he should be on... and I was like a dog with a bone. We just became proactive. Within a couple of weeks I went to the Alzheimer’s [support center] and I just sort of took on board everything. But it’s 9 years later, and you’re still learning all the time (A2).I insist on exercising at home every day. Before he [care receiver] wakes up, I have some time to do that. If my health is poor, how can I take care of him? (A11).