Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.21-40.
Publisher:
Sage
Befriending is a service in which volunteers provide companionship and support usually to people who are lonely or isolated. Such services are promoted in Scotland’s national strategy to improve the lives of people with dementia, around a third of whom live alone. However, little is known about the perspectives of recipients. Taking a holistic qualitative case study approach, the aim...
(Edited publisher abstract)
Befriending is a service in which volunteers provide companionship and support usually to people who are lonely or isolated. Such services are promoted in Scotland’s national strategy to improve the lives of people with dementia, around a third of whom live alone. However, little is known about the perspectives of recipients. Taking a holistic qualitative case study approach, the aim of this research was to explore how people living alone with dementia experienced befriending and the contexts in which their befriending relationships were meaningful. Three people were visited on five separate occasions. Largely unstructured conversations allowed individuals to prioritise areas of importance to them within the broad topics of befriending, everyday life, social networks and biography. Participants also had the option of ‘showing’ how they spent their time with their befriender. Data were analysed using the voice-centred relational method. Three key messages emerged: befriending satisfied unmet needs and wishes for particular kinds of relationship; befriending was a facilitated friendship; and befriending was a human response to contingent and existential limitations.
(Edited publisher abstract)
Subject terms:
dementia, social networks, friendship, befriending schemes, independent living, loneliness, social isolation, user views, case studies, qualitative research;
Health and Social Care in the Community, 30(2), 2022, pp.579-591.
Publisher:
Wiley
Sustaining informal care-giving for people living with dementia (PWD) is a common objective of societies worldwide. Families can contribute substantially to the support of care-giving relatives. However, a deeper understanding of the impact of informal care-giving for PWD on family life is needed. Interviewing of multiple family network members - in addition to the primary carer—provides more...
(Edited publisher abstract)
Sustaining informal care-giving for people living with dementia (PWD) is a common objective of societies worldwide. Families can contribute substantially to the support of care-giving relatives. However, a deeper understanding of the impact of informal care-giving for PWD on family life is needed. Interviewing of multiple family network members - in addition to the primary carer—provides more insight into familial contexts of care-giving. This pilot study aims to explore how informal carers reconcile dementia care-giving and family life from a family network perspective. Therefore, this study conducted 14 narrative interviews with family carers from seven care-giving networks in Germany, which the researchers interpreted using the documentary method. The yielded relational typology describes five types of family carers of PWD. These types reflect the way the families deal with dementia care-giving based on the interrelation between relationship quality and the distribution of care-giving tasks within the family. Depending on the constellation of this interrelationship, family carers either experience care as a joint project, as co-operation with external support or within the family, as disappointment or as a predicament without alternatives. Finally, if the care-giving tasks are not shared, or if the distribution is perceived as unequal, relationship break downs can occur, especially in family ties that are already strained. However, joint care-giving and strong ties can also bring the family closer together and enhance care experiences. Care professionals and social workers should be aware of the family network of dementia carers and support the development of a sense of family unity. This can contribute to positive care experiences among family carers and thus increase the maintenance of informal dementia care.
(Edited publisher abstract)
Subject terms:
dementia, carers, informal care, family members, social networks, families, activities of daily living, relationships, family relations;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.489-502.
Publisher:
Sage
Objectives: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. This study set two objectives: to work with people...
(Edited publisher abstract)
Objectives: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. This study set two objectives: to work with people living with dementia to develop an intervention based on nostalgia, and to assess whether couples could engage in nostalgic conversations. Method: The research fell into three phases. First, people living with dementia and with carers were consulted to identify the parameters for a nostalgic intervention. Second, a workbook was drafted that contained triggers for nostalgic conversations, which the researchers then took back to the public contributors for refinement. Finally, the workbook was trialled over 5 weeks with six couples, each of which included a person living with dementia. The researchers assessed pre- and post-intervention self-esteem, self-growth, meaning in life and social connectedness for participants with dementia and social connectedness for carers. This study then calculated Reliable Change Index scores and established levels of clinically significant change. This study also interviewed couples at the end of the intervention to explore its implementation and acceptability. Results: All six couples could identify nostalgic memories, with five couples successfully integrating the nostalgic conversations into their day-to-day lives. A sixth couple found it difficult to engage fully with the intervention, but still considered it useful. All six couples manifested a reliable change in at least one outcome, with one couple showing reliable change across three outcomes. Conclusion: The psychological benefits of nostalgia have been robustly demonstrated in laboratory-based studies. This co-production of an intervention that sets nostalgic recall into the context of a conversation has clinical potential but requires further investigation through a larger study.
(Edited publisher abstract)
Subject terms:
dementia, reminiscence therapy, co-production, intervention, self-esteem, social networks, life story work, partners, user participation;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.701-721.
Publisher:
Sage
Introduction: The number of people with dementia has been increasing. Evidence shows that over 16 million family caregivers provide unpaid care for people with dementia. However, family caregivers experience several challenges throughout their caregiving role, including that of social isolation. Although social isolation in people with dementia has been well documented, social isolation...
(Edited publisher abstract)
Introduction: The number of people with dementia has been increasing. Evidence shows that over 16 million family caregivers provide unpaid care for people with dementia. However, family caregivers experience several challenges throughout their caregiving role, including that of social isolation. Although social isolation in people with dementia has been well documented, social isolation in their family caregivers has not received as much scholarly attention. This scoping review sought to address this dearth of research through the following research question: “What are themes, concepts, or constructs that describe social isolation of family caregivers for people living with dementia?”. Method: An electronic search was conducted in PubMed, PsycInfo, and Scopus, using the following Boolean search phrase: dementia AND “social isolation” AND (caregiver OR carers). Content analysis was conducted to identify relevant themes. Findings: The initial search yielded 301 studies. Through screening processes, 13 studies were eligible for review. Based on a synthesis of evidence, five themes emerged from the data: disease progression, psychological state, social networks, social supports, and technology. Discussion: This review demonstrates that caregiving is related to social isolation in family caregivers of people living with dementia. The experience of social isolation was related to the progression of dementia, psychological states, and lack of supports. In contrast, social supports, social networks, and using technology may reduce social isolation. Identifying themes provides policy and practice implications, such as using information and communication technology to create and redefine social networks.
(Edited publisher abstract)
Subject terms:
social networks, social isolation, carer views, carers, dementia, literature reviews, family support;
Health and Social Care in the Community, 29(4), 2021, pp.1001-1009.
Publisher:
Wiley
Perceived health in caregivers is related to caregiver burden, psychological well-being and social support. Women perceive poorer health and are more likely than men to experience caregiver overload. The objectives of this study were to analyse perceived health, perceived social support and caregiver overload in family caregivers of patients with Alzheimer's disease, as well as to study the effect of the perceived social support as a mediating variable between perceived health and caregiver overload was also analysed, taking into account the caregivers’ gender. A cross-sectional descriptive design was used. The sample consisted of 255 family caregivers of individuals with Alzheimer's disease in the Almería Health District (Spain). This study was conducted from January to December 2015. The caregivers’ mean age was 55.35 years (SD = 12.35), with 85.5% (n = 218) being women and 14.5% (n = 37) being men. The following questionnaires were administered: Goldberg's General Health Questionnaire-28; the Caregiver Strain Index, measuring caregiver overload; and the Duke-UNC-11 functional social support questionnaire. Poor perceived health, high caregiver overload and high perceived social support were found. Differences in perceived health and perceived social support were significantly higher in women than in men. In women, perceived social support was a mediating variable between perceived health and family caregiver overload. This mediation was not observed in men. This study suggests that perceived social support influences the emotional well-being and the caregiver overload of family caregivers of patients with Alzheimer's. However, its effect differs according to gender. It would, therefore, be necessary to have an in-depth understanding of the variables determining these differences in family caregivers.
(Edited publisher abstract)
Perceived health in caregivers is related to caregiver burden, psychological well-being and social support. Women perceive poorer health and are more likely than men to experience caregiver overload. The objectives of this study were to analyse perceived health, perceived social support and caregiver overload in family caregivers of patients with Alzheimer's disease, as well as to study the effect of the perceived social support as a mediating variable between perceived health and caregiver overload was also analysed, taking into account the caregivers’ gender. A cross-sectional descriptive design was used. The sample consisted of 255 family caregivers of individuals with Alzheimer's disease in the Almería Health District (Spain). This study was conducted from January to December 2015. The caregivers’ mean age was 55.35 years (SD = 12.35), with 85.5% (n = 218) being women and 14.5% (n = 37) being men. The following questionnaires were administered: Goldberg's General Health Questionnaire-28; the Caregiver Strain Index, measuring caregiver overload; and the Duke-UNC-11 functional social support questionnaire. Poor perceived health, high caregiver overload and high perceived social support were found. Differences in perceived health and perceived social support were significantly higher in women than in men. In women, perceived social support was a mediating variable between perceived health and family caregiver overload. This mediation was not observed in men. This study suggests that perceived social support influences the emotional well-being and the caregiver overload of family caregivers of patients with Alzheimer's. However, its effect differs according to gender. It would, therefore, be necessary to have an in-depth understanding of the variables determining these differences in family caregivers.
(Edited publisher abstract)
Health and Social Care in the Community, early cite October 2021,
Publisher:
Wiley
Supported housing has been highlighted as a potential way to facilitate independent living for people with dementia by integrating housing with support or care services. However, the benefits and challenges of living with dementia in supported housing are not fully understood. This systematic review and thematic synthesis sought to understand how living in supported housing influences the lives...
(Edited publisher abstract)
Supported housing has been highlighted as a potential way to facilitate independent living for people with dementia by integrating housing with support or care services. However, the benefits and challenges of living with dementia in supported housing are not fully understood. This systematic review and thematic synthesis sought to understand how living in supported housing influences the lives of people with dementia, from the perspectives of people with dementia, their supporters, health and social care professionals. Seven databases were searched for qualitative research, date range: 1 January 2000–31 July 2021. Eleven published articles were included in the thematic synthesis. One core theme was generated, Maintaining Independence and Autonomy, divided into three subthemes – Support and Care, Social Relationships and the Physical Environment. Factors like person-centred care, social interaction and good environmental design contributed to the maintenance of independence and autonomy. Barriers like low staff ratios, stigma and limited access to the community led to a loss of independence and autonomy – often leading to people with dementia being referred or managed out of the settings. Although the articles acknowledged the importance of maintaining independence and autonomy for people with dementia, it appeared that supported housing settings often lacked the resources and facilities to make this a reality. More high-quality research is needed, particularly from the perspectives of people with dementia and their supporters, to understand if supported housing can delay care home admission, promote independence and autonomy and facilitate social networks and community connections for this population.
(Edited publisher abstract)
Subject terms:
literature reviews, supported housing, dementia, qualitative research, systematic reviews, integrated services, independence, user views, social networks, staff views, carer views, environment;
...and Methods: the researchers collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members’ support to the caregiver and help to the care recipient. Results: this study found four common caregiving network types: large networks with many helpers; large networks
(Edited publisher abstract)
Background and Objectives: There are nearly 18 million family caregivers in the United States assisting an older adult in need of help. Identifying the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods: the researchers collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members’ support to the caregiver and help to the care recipient. Results: this study found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications: This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerably among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.
(Edited publisher abstract)
Subject terms:
dementia, carers, social networks, informal care, older people;
Dementia: the International Journal of Social Research and Practice, 20(8), 2021, pp.2957-2981.
Publisher:
Sage
This realist review of the literature provided a contemporary understanding of neighbourhoods and dementia and described how people living with dementia and their neighbourhood interacted via ongoing place-making and remaking processes. Drawing on 44 articles, neighbourhoods were revealed to have fluid and dynamic qualities where people with dementia used their strength and resources to connect...
(Edited publisher abstract)
This realist review of the literature provided a contemporary understanding of neighbourhoods and dementia and described how people living with dementia and their neighbourhood interacted via ongoing place-making and remaking processes. Drawing on 44 articles, neighbourhoods were revealed to have fluid and dynamic qualities where people with dementia used their strength and resources to connect to significant people and places. The review also indicated that the person with dementia–neighbourhood relationship was underpinned by four themes: ‘home’, ‘social interactions’, ‘activities’ and ‘transportation’. Further research is encouraged to use innovative, participatory methods to explore the neighbourhood–dementia nexus in depth whilst paying close attention to social inclusion and diversity.
(Edited publisher abstract)
Subject terms:
qualitative research, literature reviews, neighbourhoods, dementia, social networks, place-based approach, user views;
Dementia: the International Journal of Social Research and Practice, 20(8), 2021, pp.2779-2801.
Publisher:
Sage
Background and Objectives: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. The researchers study developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants’ accounts how the intervention was experienced and used in the pandemic...
(Edited publisher abstract)
Background and Objectives: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. The researchers study developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants’ accounts how the intervention was experienced and used in the pandemic context. Research Design and Method: This study recruited adults aged 60+ years with memory concerns (without dementia). Participants completed baseline assessments and qualitative interviews/focus groups before and after the 10-week intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Results: 12/17 participants approached completed baseline assessments, attended 100/120 (83.3%) intervention sessions and met 140/170 (82.4%) of goals set. Most had not used video calling before. In the thematic analysis, our overarching theme was social connectedness. Three sub-themes were as follows: Retaining independence and social connectedness: social connectedness could not be at the expense of independence; Adapting social connectedness in the pandemic: participants strived to compensate for previous social connectedness as the pandemic reduced support networks; Managing social connections within and through the intervention: although there were tensions, for example, between sharing of achievements feeling supportive and competitive, participants engaged with various lifestyle changes; social connections supported group attendance and implementation of lifestyle changes. Discussion and Implications: This intervention was acceptable and feasible to deliver by group video-call. The researchers argue that dementia prevention is both an individual and societal concern. For more vulnerable populations, messages that lifestyle change can help memory should be communicated alongside supportive, relational approaches to enabling lifestyle changes.
(Edited publisher abstract)
Subject terms:
social networks, dementia, prevention, Covid-19, intervention, digital technology, wellbeing, social media, groups, cognitive impairment, internet;
Quality in Ageing and Older Adults, 22(3/4), 2021, pp.147-158.
Publisher:
Emerald
Purpose: This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach: The paper adopts a single case study design applied thematic analysis to semi-structured interview data...
(Edited publisher abstract)
Purpose: This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach: The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown. Findings: Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant’s ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation. Research limitations/implications: The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies. Practical implications: Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity. Originality/value: Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia.
(Edited publisher abstract)
Subject terms:
care homes, dementia, Covid-19, case studies, user views, emotions, social networks;