Health and Social Care in the Community, 30(4), 2022, pp.e1255-e1267.
Publisher:
Wiley
The importance of supporting unpaid carers for people living with dementia (PLWD) is recognised in adult social care policy both nationally and internationally. In the UK, social care legislation emphasises care and support should help people achieve the outcomes that matter to them in their life; this includes the opportunity to take a break from caring routines and responsibilities. Accordingly...
(Edited publisher abstract)
The importance of supporting unpaid carers for people living with dementia (PLWD) is recognised in adult social care policy both nationally and internationally. In the UK, social care legislation emphasises care and support should help people achieve the outcomes that matter to them in their life; this includes the opportunity to take a break from caring routines and responsibilities. Accordingly, there is growing policy and practice interest in short breaks provision to address the diversity of carer break needs and preferences and deliver meaningful outcomes for carers and those they support. This paper reports findings from qualitative staff interviews that offered strategic and operational insights into short breaks provision. It presents a dynamic model of the short break landscape in a region of Wales, describing factors shaping local and regional decision-making. The model identifies key challenges (barriers) and opportunities (enablers) that shape the planning, commissioning and delivery of bespoke short breaks for spousal carers and their partner living with dementia. Through highlighting the interplay between complex context-specific processes and contingences, the model informs initial theory development in short breaks provision.
(Edited publisher abstract)
Subject terms:
short break care, commissioning, dementia, carers, partners, staff views, service provision, models;
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;
International Journal of Geriatric Psychiatry, 37(1), 2022,
Publisher:
Wiley
Objectives: Persons with progressive cognitive impairment (CI) increasingly rely on surrogate decision-makers for everyday activities. Yet, little is known about changes in everyday preferences over time or about concordance between persons with CI and their care partners regarding longitudinal changes. Methods: The sample included 48 dyads of persons with CI (Clinical Dementia Rating Scale score
(Edited publisher abstract)
Objectives: Persons with progressive cognitive impairment (CI) increasingly rely on surrogate decision-makers for everyday activities. Yet, little is known about changes in everyday preferences over time or about concordance between persons with CI and their care partners regarding longitudinal changes. Methods: The sample included 48 dyads of persons with CI (Clinical Dementia Rating Scale score ≥0.5) and their care partners. The Preferences for Everyday Living Inventory was used to assess importance of preferences among persons with CI at baseline and follow-up (mean 486 days). Care partners separately completed concurrent proxy assessments. Mixed random and fixed effects longitudinal models were used to evaluate changes in ratings and concordance levels between persons with CI and care partners. Results: There were significant gender differences regarding importance ratings of “autonomous choice” and “social engagement” preferences over time: women with CI rated these preferences as more important across time as a whole. Higher levels of neuropsychiatric symptoms were associated with less importance of “social engagement” preferences across time as a whole for persons with CI and a more negative discrepancy between persons with CI and care partner proxy assessments as time went on. Conclusion: This study yields new insights into predictors of longitudinal change in everyday preferences among persons with CI and their care partners. Although preferences were largely stable over time, there is increasing support for the relationship between differences in “social engagement” preferences and neuropsychiatric symptoms, which may have implications for monitoring and/or treatment in the context of cognitive impairment.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.181-195.
Publisher:
Sage
Background: Hypersexuality is one of the behavioural and psychological symptoms of dementia. This symptom can lead to poor quality of life for the person who lives with dementia, as well as for his or her caregiver, who might be exposed to sexual assault. Aim: This study aimed to highlight the experience of an older woman living and coping with a spouse who exhibits dementia-related...
(Edited publisher abstract)
Background: Hypersexuality is one of the behavioural and psychological symptoms of dementia. This symptom can lead to poor quality of life for the person who lives with dementia, as well as for his or her caregiver, who might be exposed to sexual assault. Aim: This study aimed to highlight the experience of an older woman living and coping with a spouse who exhibits dementia-related hypersexuality. Method: A narrative case-study of a single case was designed, composed of four semi-structured interviews conducted over a 10-month period. The data were analyzed through thematic, structural, and performance analysis. Findings: Four phases were revealed, depicting the experience of being a partner and caregiver of a spouse with dementia-related hypersexuality: a) “I need help”: A distress call; b) “It depends how long I agree to go on with it”: Living with the ambiguous reality of dementia-related hypersexual behavior within an ongoing intimate relationship; c) “It’s as if I’m hugging someone who’s no longer alive”: The transition from the previous couplehood identity to a new couplehood identity; and d) “I am just taking care of him as if he is a child”: A compassionate couplehood identity construction. Conclusions: Living with a partner with dementia-related hypersexuality is a distressing experience for the caregiver-spouse. Yet, positive memories from a long intimate relationship can lead to the creation of a compassionate identity, which supports the caregiving process, and creates a sense of acceptance and meaning making. This, in turn, enables a positive aging experience. These finding have some practical implications for supporting and intervening in such cases.
(Edited publisher abstract)
Subject terms:
case studies, dementia, sexual behaviour, sexuality, behaviour problems, partner abuse, partners, sexual abuse, ageing;
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;
Journal of Gerontological Social Work, 64(5), 2021, pp.518-532.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks
(Edited publisher abstract)
Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 20(5), 2021, pp.1791-1813.
Publisher:
Sage
Introduction: Life story books in dementia are used as a part of person-centred care. Whilst the current literature demonstrates associations between completing life story books and increased well-being, little is known about the process and how it is experienced by individuals living with dementia. Life stories are often created with a loved one, such as a partner or spouse; however, further...
(Edited publisher abstract)
Introduction: Life story books in dementia are used as a part of person-centred care. Whilst the current literature demonstrates associations between completing life story books and increased well-being, little is known about the process and how it is experienced by individuals living with dementia. Life stories are often created with a loved one, such as a partner or spouse; however, further research is required to explore experiences of life story work as a shared endeavour. Furthermore, the use of technology to create life stories is growing, with little known about how digital elements are experienced. This study aimed to understand these gaps by exploring the shared experiences of individuals with dementia and their partner/spouse creating a digital life story book. Design and Methods: Four couples participated in the six-week creation of their digital life story book. Following this, qualitative data relating to couples’ experiences were collected via semi-structured interviews. Findings: Thematic analysis was used to interpret data and identified four superordinate themes relating to the shared experiences of creating their digital life story book: ‘Creating a life story book is a huge undertaking’, ‘Looking back and looking forward: The emotional journey’, ‘Whose story is it and who does it belong to?’ and ‘Challenges of using technology to build the life story book’. Conclusions: Overall, this study demonstrated that creating a digital life story was a positive experience that can support couples’ well-being, but we should not underestimate the time it will take and range of emotions experienced. The experience of using technology varied, emphasising that we must be mindful of individual preferences before considering a digital approach.
(Edited publisher abstract)
Subject terms:
dementia, life story work, partners, reminiscence therapy, digital technology, intervention;
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;
DONNELLAN Warren J., BENNETT Kate Mary, WATSON Natalie
Journal article citation:
Quality in Ageing and Older Adults, 22(1), 2021, pp.40-55.
Publisher:
Emerald
Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across
(Edited publisher abstract)
Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across spousal and adult daughter carers of PLWD. Design/methodology/approach: This study conducted in-depth qualitative interviews with a purposive sample of 13 carers from North West England and analysed the data using a constructivist grounded theory approach (Charmaz, 2003). Findings: Adult daughters were motivated to care out of reciprocity, whereas spouses were motivated to care out of marital duty. Spouses had a more positive and accepting attitude towards caregiving and were better able to maintain continuity, which facilitated their resilience. Research limitations/implications: Resilience emerged on multiple levels and depended on the type of kinship tie, which supports an ecological approach to resilience. The implications of these findings are discussed. Originality/value: This paper makes a novel contribution to the literature as it uses an in-depth qualitative methodology to compare resilience across spousal and adult daughter carers of PLWD. This study adopts an ecological approach to identify not just individual-level resilience resources but also interactive community- and societal-level resources.
(Edited publisher abstract)
Subject terms:
resilience, carers, dementia, informal care, family members, partners, carer views, qualitative research;
Dementia: the International Journal of Social Research and Practice, 20(1), 2021, pp.273-290.
Publisher:
Sage
Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences...
(Edited publisher abstract)
Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being ‘alone’ striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple’s relationship for their mutual well-being.
(Edited publisher abstract)