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;
International Journal of Geriatric Psychiatry, 37(2), 2022,
Publisher:
Wiley
Objectives: The Covid-19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short-stay. The researchers investigated impact of Covid-19 on views and expectations...
(Edited publisher abstract)
Objectives: The Covid-19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short-stay. The researchers investigated impact of Covid-19 on views and expectations of carers of people living with dementia about residential respite. Methods/Design: Qualitative interviews with 35 carers were conducted March–December 2020: 30 women and 5 men, with ages ranging 30 to 83 years. Interviews explored experiences, views of residential respite, and expectations post-Covid. Data were thematically analysed and salient concepts were drawn out and discussed within the research team and study advisers. Results: Three themes were identified in transcripts, relating to impact of Covid-19 on views and expectations of respite: (1) Carers described regularly negotiating risks and stresses of Covid, weighing up how to prevent infection and changing family arrangements to facilitate caring; (2) Carers were balancing different needs, prioritising needs of their relatives while bearing the impact of cumulative caregiving responsibilities. (3) Uncertainty about future residential respite continued, in terms of availability, ongoing restrictions and trustworthy information sources. Conclusions: Residential respite is a positive, acceptable option for some carers to get a break from caring. Covid-19 may have heighted some of caregiving stressors and there may be an increased need for a break. Views of care homes developed during the pandemic suggest that individual confidence to use respite may need to be rebuilt.
(Edited publisher abstract)
Subject terms:
Covid-19, carers, carer views, short break care, dementia, access to services, residential care, qualitative research;
Health and Social Care in the Community, early cite August 2021,
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:
planning, commissioning, short break care, carers, dementia, staff views, service provision, qualitative research;
Health and Social Care in the Community, 29(5), 2021, pp.1566-1583.
Publisher:
Wiley
Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer
(Edited publisher abstract)
Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to ‘Rethink Respite’ media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and ‘role captivity’. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.
(Edited publisher abstract)
Subject terms:
evaluation, short break care, dementia, carers, service uptake, attitudes, intervention;
Quality in Ageing and Older Adults, 22(2), 2021, pp.81-94.
Publisher:
Emerald
...and short breaks for carers for older people, including those living with dementia, was completed. National and international literature published from 2000 onwards was reviewed. The scoping review focused on well-being outcomes, identified by previous research, as being important to carers. Findings: Most studies investigating the outcomes of short breaks for carers supporting older people focus
(Edited publisher abstract)
Purpose: There is a growing policy impetus to promote carer well-being through the provision of personalised short breaks. However, understanding of what makes for a successful personalised short break is limited. This paper aims to identify key evidence gaps and considers how these could be addressed. Design/methodology/approach: A scoping review mapping the evidence base relevant to respite and short breaks for carers for older people, including those living with dementia, was completed. National and international literature published from 2000 onwards was reviewed. The scoping review focused on well-being outcomes, identified by previous research, as being important to carers. Findings: Most studies investigating the outcomes of short breaks for carers supporting older people focus on traditional day and residential respite care. Although there have been developments in more personalised break options for carers, research exploring their impact is scarce. There is limited knowledge about how these personalised breaks might support carers to realise important outcomes, including carer health and well-being; a life alongside caring; positive caregiving relationships; choices in caring; and satisfaction in caring. Three priority lines of inquiry to shape a future research agenda are identified: understanding what matters – evidencing personalised short break needs and intended outcomes; capturing what matters – outcomes from personalised short breaks; and commissioning, delivering and scaling up personalised short breaks provision to reflect what matters.
Originality/value
This paper contributes to the development of an outcome-focused research agenda on personalised short breaks.
(Edited publisher abstract)
Subject terms:
short break care, personalisation, person-centred care, research, carers, dementia, outcomes, older people;
This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data...
(Edited publisher abstract)
This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data, interviews with senior leaders and commissioners in adult social care, a survey of professionals, a survey of carers, and workshops held in England and Wales with people living with dementia and carers. The findings show that there is a reported lack of available services that enable carers of people living with dementia to take a break from caring. Positive support is reported by some (such as that provided by local charities, and the use of community resources); however, both professionals and carers report difficulty in finding care provision which suits the needs of people living with dementia, and this in turn prevents carers from arranging breaks for themselves. The experience of carer assessments reported by carers is mixed; however, this research confirms findings in the wider literature that only a minority of carers have received an assessment of their needs. Furthermore, these assessments were not always experienced positively. The nature of providing short breaks for carers is challenging from a legislative perspective and at a practice level, particularly where support may be delivered to a person living with dementia but is intended primarily for the benefit of the person caring for them. Some evidence highlighted situations where this was the case, as well as situations where the person with dementia may have different wishes to the person caring for them in terms of replacement care.
(Edited publisher abstract)
Subject terms:
dementia, carers, carers assessment, short break care, user views;
Dementia: the International Journal of Social Research and Practice, 19(5), 2020, pp.1712-1731.
Publisher:
Sage
Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers. Method: A cross...
(Publisher abstract)
Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers. Method: A cross-sectional survey was administered to family caregivers (n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services (R2 = 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression Analyses. Results: The use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time. Conclusions: These results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.
(Publisher abstract)
Subject terms:
dementia, carers, home care, surveys, service uptake, adult social care, short break care;
Health and Social Care in the Community, 28(3), 2020, pp.850-861.
Publisher:
Wiley
The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting...
(Publisher abstract)
The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi‐structured interviews were conducted with 126 family carers who had used one of two New South Wales‐based respite cottages within a 2‐year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional‐style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.
(Publisher abstract)
Subject terms:
dementia, short break care, carer views, residential care, qualitative research;
International Journal of Geriatric Psychiatry, 35(6), 2020, pp.601-609.
Publisher:
Wiley
Objectives: To evaluate cost‐effectiveness of an in‐home respite care program in addition to standard community‐based dementia care to support informal caregivers of persons with dementia compared with standard community‐based dementia care. Methods: An age‐dependent decision‐analytic Markov model was applied from a third‐party payer and a societal perspective projecting results of a quasi...
(Publisher abstract)
Objectives: To evaluate cost‐effectiveness of an in‐home respite care program in addition to standard community‐based dementia care to support informal caregivers of persons with dementia compared with standard community‐based dementia care. Methods: An age‐dependent decision‐analytic Markov model was applied from a third‐party payer and a societal perspective projecting results of a quasi‐experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one‐way and probabilistic sensitivity analyses were conducted. Results: Implementing the program resulted in a quality‐adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third‐party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost‐effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third‐party payer perspective and the societal perspective, respectively. The scenario, one‐way sensitivity, and probabilistic analyses demonstrated robustness of the base‐case results. Conclusion: This cost‐effectiveness analysis suggests that an in‐home respite care program in addition to standard community‐based dementia care is a cost‐effective approach compared with standard community‐based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.
(Publisher abstract)
Subject terms:
short break care, carers, dementia, cost effectiveness, economic evaluation, informal care, home care;
Aging and Mental Health, 24(11), 2020, pp.1886-1893.
Publisher:
Taylor and Francis
Objectives: Providing care to individuals with dementia places burden on family caregivers, which may relate to depressive symptoms. Although leisure activities may serve as a coping resource to relieve caregiving stress, only a few studies exist on how leisure and depressive symptoms associate in dementia caregivers. Moreover, less is known about the role of gender in this relationship. Thus...
(Edited publisher abstract)
Objectives: Providing care to individuals with dementia places burden on family caregivers, which may relate to depressive symptoms. Although leisure activities may serve as a coping resource to relieve caregiving stress, only a few studies exist on how leisure and depressive symptoms associate in dementia caregivers. Moreover, less is known about the role of gender in this relationship. Thus, this study examined the relationship among leisure activity, gender and depressive symptoms. Method: A cutoff score (≥10) on the short form of the Center for Epidemiological Studies Depression Scale was used to measure presence of depressive symptoms. Independent variables were frequency of engagement in and satisfaction with leisure activities. Results: Logistic regression analyses from 632 dementia caregivers in the Resources for Enhancing Alzheimer’s Caregiver Health II Study showed that more frequent and higher satisfaction in leisure engagement were negatively related to having depressive symptoms. Moreover, the negative association between frequent leisure engagement and depressive symptoms was more pronounced among male caregivers. Conclusion: Providing respite care for dementia caregivers to engage in leisure can be a promising coping strategy for this population. Also, gender difference in leisure-depressive symptoms relationship suggests different support needed for male and female caregivers in addition to leisure.
(Edited publisher abstract)
Subject terms:
dementia, leisure activities, carers, depression, gender, short break care;