Background and Objectives: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs...
(Edited publisher abstract)
Background and Objectives: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs after a diagnosis of young-onset dementia (YOD). Research Design and Methods: Five electronic databases were searched for qualitative articles from inception to January 2020. Qualitative data were extracted from included articles and synthesized across articles using taxonomic analysis. Results: A total of 486 articles were obtained through the database and hand searches, and 322 articles were screened after the removal of duplicates. Sixty studies met eligibility criteria and are included in this meta-synthesis. Four themes emerged through meta-synthesis: (a) common psychosocial stressors experienced by both PWDs and CGs, (b) unique psychosocial stressors experienced by either PWDs or CGs, (c) common adaptive coping strategies employed by both PWDs and CGs, and (d) unique adaptive coping strategies employed by either PWDs or CGs. Within each meta-synthesis theme, subthemes pertaining to PWDs, CGs, and dyads (i.e., PWD and CG as a unit) emerged. Discussion and Implications: The majority of stressors and adaptive coping strategies of PWDs and CGs were common, supporting the use of dyadic frameworks to understand the YOD experience. Findings directly inform the development of resiliency skills interventions to promote adaptive coping in the face of a YOD diagnosis for both PWDs and CGs.
(Edited publisher abstract)
Subject terms:
literature reviews, qualitative research, carer views, user views, young onset dementia, coping behaviour, stress, psychosocial approach;
Background and Objectives: Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial...
(Edited publisher abstract)
Background and Objectives: Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial support resources. Research Design and Methods: We conducted live video dyadic interviews with couples (persons with YOD and spousal caregivers together; N = 23 couples). We transcribed interviews and coded data based on a hybrid deductive-inductive approach, with the structure of the coding framework informed by the stress and coping framework, and all codes derived from the data. We derived themes and subthemes related to psychosocial stressors and adaptive coping. Results: We identified 5 themes related to psychosocial stressors: the impact of diagnosis, social and family relationships, changing roles and responsibilities, planning for an uncertain future, and couple communication and relationship strain. We identified 7 themes related to adaptive coping strategies: processing emotions and cultivating acceptance, promoting normalcy, efforts to preserve persons with YOD's independence and identity, collaborative and open communication, social support, meaning-making, humor, and positivity, and lifestyle changes and self-care. Discussion and Implications: We replicated several themes regarding stressors and adaptive coping strategies from prior YOD research and identified novel themes and subthemes related to dyadic stressors, sources of couples' relationship strain, and the ways in which couples effectively cope with YOD. Findings inform the development of dyadic interventions to reduce YOD-related distress for both persons with dementia and spousal caregivers.
(Edited publisher abstract)
Subject terms:
carer views, young onset dementia, psychosocial approach, partners, diagnosis, stress, coping behaviour, family relations, qualitative research, user views;
Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.77-93.
Publisher:
Sage
Objectives: Psychosocial support for people with dementia with Lewy bodies (DLB) and family care partners is frequently lacking, despite the need expressed by those with lived experience. The objective was to examine the feasibility and acceptability of an intervention designed to build coping capability. Design: The design was non-randomised with all participants receiving the intervention
(Edited publisher abstract)
Objectives: Psychosocial support for people with dementia with Lewy bodies (DLB) and family care partners is frequently lacking, despite the need expressed by those with lived experience. The objective was to examine the feasibility and acceptability of an intervention designed to build coping capability. Design: The design was non-randomised with all participants receiving the intervention. Setting: The setting was a Memory Assessment and Management Service in the Northeast of England. Participants: Participants comprised 19 dyads consisting of a person with DLB and a family care partner. Intervention: The intervention was group-based, with weekly sessions attended for up to four successive weeks. It was informed by Social Cognitive Theory. Measurements: Data were collected on recruitment, attendance and attrition, self-efficacy, mood, stress and participant experience. Results: Recruitment was achieved with minimal attrition and three successive groups were delivered. Care partners felt more in control and able to cope in at least 3 of 13 areas with 73% feeling this way in eight or more areas. Three themes were identified from post-intervention interviews: people like us, outcomes from being a group member and intervention design. Conclusions: A DLB-specific group intervention is acceptable to people with DLB and family care partners, and recruitment is feasible within a specialist service. Participation may enhance understanding of this condition and reduce social isolation. It may improve care partners’ coping capability particularly if targeted towards those with low prior understanding of DLB and more stress. Means of evaluating outcomes for people with DLB need further development.
(Edited publisher abstract)
Health and Social Care in the Community, 30(2), 2022, pp.558-569.
Publisher:
Wiley
The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established ‘coping’ as a primary means of mediating stressors associated with caregiving. However...
(Edited publisher abstract)
The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established ‘coping’ as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In-depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed ‘social coping’ (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term.
(Edited publisher abstract)
Subject terms:
dementia, carers, informal care, family members, coping behaviour, carer views;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.396-409.
Publisher:
Sage
Creative activities can have profound positive effects on family members of persons with dementia. Typically, these effects have been studied in the context of standardized arts-based interventions. However, family members of persons with dementia may also engage in creative activities outside of standardized interventions. As these kinds of creative activities have not been investigated so far...
(Edited publisher abstract)
Creative activities can have profound positive effects on family members of persons with dementia. Typically, these effects have been studied in the context of standardized arts-based interventions. However, family members of persons with dementia may also engage in creative activities outside of standardized interventions. As these kinds of creative activities have not been investigated so far, the present study tried to fill this gap based on seven semi-structured interviews. The interviews were analysed using qualitative content analysis. The participants reported a wide range of activities that included, but were not limited to, prototypical creative activities such as making music and writing. Crucially, the positive effects extended beyond the experience of engaging in the activities themselves and also included significant changes in cognitions, emotions and behaviour that helped the participants to make meaning of the challenges and difficulties that are associated with the dementia diagnosis of a loved one.
(Edited publisher abstract)
Subject terms:
family support, dementia, arts, family members, coping behaviour, art therapy, user views, carer views;
Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway...
(Edited publisher abstract)
Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.
(Edited publisher abstract)
Subject terms:
home care, qualitative research, dementia, carer views, partners, informal care, social isolation, coping behaviour, wellbeing, Covid-19;
Dementia: the International Journal of Social Research and Practice, 20(8), 2021, pp.2933-2956.
Publisher:
Sage
Background: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level...
(Edited publisher abstract)
Background: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden. Design and methods: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed. Findings: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents’ behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support. Conclusions: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members’ access to relevant care and support for themselves.
(Edited publisher abstract)
Subject terms:
literature reviews, young adults, children, young people, user views, dementia, parents, coping behaviour, family members, young onset dementia, informal care, young carers, carers;
Working with Older People, 25(4), 2021, pp.283-293.
Publisher:
Emerald
Purpose: Because of COVID-19 restrictions, Meeting Centres (MCs) for people affected by dementia in the UK ceased to meet physically but continued to provide remote support. The aim was to understand the extent to which MCs were able to operate when physical meetings were not possible and how they achieved particularly in relation to the adaptation and coping model and practical, emotional...
(Edited publisher abstract)
Purpose: Because of COVID-19 restrictions, Meeting Centres (MCs) for people affected by dementia in the UK ceased to meet physically but continued to provide remote support. The aim was to understand the extent to which MCs were able to operate when physical meetings were not possible and how they achieved particularly in relation to the adaptation and coping model and practical, emotional and social adjustment. Design/methodology/approach: Semi-structured interviews and focus groups were conducted with people affected by dementia, staff, volunteers, managers and trustees from MCs. Data were collected on the type and quantity of contact MCs had with people affected by dementia during lockdown. Data were coded and mapped against adaptation and coping strategies, i.e. practical understanding and empowerment, optimising emotional well-being and opportunities for social engagement. Findings: A range of remote approaches, both technological (e.g. using online platforms) and non-technological (e.g. newsletters and post) were implemented alongside limited face-to-face contact. Regular MC activities were adapted using the different approaches. It was possible to map all the adaptation and coping model support strategies to the activities delivered in this way. MCs were able to adapt rapidly to continue to support people to adjust to change. Social implications: Moving forward, combining approaches (usual MC and remote) means person-centred support could be optimized, addressing social isolation and reaching those who cannot attend MCs. Originality/value: This paper offers new insight into the extent to which community-based support for people with dementia can continue when face-to-face contact is not possible because of COVID-19.
(Edited publisher abstract)
Subject terms:
dementia, social isolation, Covid-19, community care, day centres, day services, service development, online services, coping behaviour;
Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate...
(Edited publisher abstract)
Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. Research Design and Methods: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers’ coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. Results: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers—high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers’ individual resources such as personal characteristics and caregiving stressors like PWD’s problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. Discussion and Implications: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 19(3), 2020, p.590–605.
Publisher:
Sage
Background and objectives: Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviours have implications for both care partners’ well-being. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioural and psychological symptoms of dementia. Design...
(Edited publisher abstract)
Background and objectives: Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviours have implications for both care partners’ well-being. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioural and psychological symptoms of dementia. Design: As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results: Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humour; (5) self-care; and (6) social support. Conclusion: Family caregivers manage behavioural and psychological symptoms of dementia using strategies to minimise stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviours. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being.
(Edited publisher abstract)