Health and Social Care in the Community, 30(1), 2022, pp.389-399.
Publisher:
Wiley
The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care
(Edited publisher abstract)
The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care nursing utilisation of PwD and their informal caregivers in a rural setting, according to the Andersen Behavioural Model of Health Care Use. A mixed-methods study was conducted in a rural area of Austria. In using non-random multistage sampling, anonymous questionnaires were distributed to collect data on family caregivers of PwD. Data were analysed using sequential binary logistic regression to characterise home care service users. To reflect the complexity of the Andersen model, a regression tree model was used. In total, 107 family caregivers completed the survey. Predisposing factors for home care nursing utilisation were higher age of the caregiver, female gender of PwD and kinship of the PwD and caregiver. Disruptive behaviour and independence in activities of daily living of PwD were associated with need factors for service use. According to the Andersen model, the predisposing and need factors contributed most to the explanation of home care nursing utilisation. The enabling factors employment, education and income tend to predict service use. Our findings indicate that higher age of the family caregiver and female gender of PwD are the main predictors for utilisation of home care nursing in a rural setting. To improve utilisation, the advantages of professional care services should be promoted, and the awareness about the variety of services available should be increased. To ensure a better understanding of the barriers to accessing home care, PwD should more often be included in healthcare service research.
(Edited publisher abstract)
Subject terms:
home care, carer views, nursing, dementia, service uptake, models;
Health and Social Care in the Community, 30(1), 2022, pp.295-306.
Publisher:
Wiley
Becoming an informal caregiver for an adult living with dementia has been shown to have a significant impact upon the conception of identity. This study aimed to identify how identity is constructed online amongst caregivers of individuals living with dementia and how healthcare interactions can influence identity development through the analysis of online web blogs. Sixteen online blogs (172...
(Edited publisher abstract)
Becoming an informal caregiver for an adult living with dementia has been shown to have a significant impact upon the conception of identity. This study aimed to identify how identity is constructed online amongst caregivers of individuals living with dementia and how healthcare interactions can influence identity development through the analysis of online web blogs. Sixteen online blogs (172 entries) were selected through purposive and snowball sampling, and discourse analysis was used to analyse online identity construction for informal caregivers of adults living with dementia. Six areas of online identity construction were identified: changing family role; powerful expert social campaigner; being an advocate; guardian of their relative's selfhood; sustaining creative and spiritual individuality and wider community member in online and real life. Further to this, the importance of health and social care service interactions in the development of caregiver identity revealed that professionals must ensure person-centred service contacts for caregivers. This is a challenging task in the pandemic climate where interactions between health and social care professionals and caregivers are limited due to isolation measures. It is evident that the blog format can provide a forum through which the identity of the caregiver of an adult living with dementia can evolve. The six areas of identity construction reveal the multifaceted nature of identity for the caregiver and the value of belonging to an online community both in relation to identity construction and support. This finding is especially applicable in the current pandemic when accessing a face-to-face community is challenging for caregivers who may be shielding or living in isolation. The findings of this research can aid health and social care professionals in understanding the development of caregiver identity and in providing appropriate support during service interactions, on accessing virtual and face to face community support.
(Edited publisher abstract)
Subject terms:
self-concept, carers, dementia, informal care, health care, interprofessional relations;
Journal of Gerontological Nursing, 48(1), 2022, pp.29-33.
Publisher:
Healio
Long-term care facility (LTCF) residents have been disproportionately affected by coronavirus disease 2019 (COVID-19), from increased mortality and restrictive public health measures. The current study aims to describe the experiences of residents relocating between LTCFs at the onset of the COVID-19 pandemic. Emphasis was placed on residents' sense of home and how the pandemic and ensuing isolation affected their transition. This qualitative study follows the principles of constructivist grounded theory. Seven of 10 residents interviewed had cognitive impairment (mean age = 84 years). Four primary themes were elicited from the interviews focusing on residents' perceptions of their environment and highlights the value placed on privacy and control, the multifaceted feeling of loss during the pandemic, the importance of relationships as a source of comfort and pleasure, and resilience shown by residents in times of hardship. Our study indicates that residents experienced dichotomy and paradox during the pandemic, attempting to strike a balance between isolation and camaraderie, infection risk and mental health, and loss and resilience. The need for familial contact and socialization must be balanced against infection control measures.
(Edited publisher abstract)
Long-term care facility (LTCF) residents have been disproportionately affected by coronavirus disease 2019 (COVID-19), from increased mortality and restrictive public health measures. The current study aims to describe the experiences of residents relocating between LTCFs at the onset of the COVID-19 pandemic. Emphasis was placed on residents' sense of home and how the pandemic and ensuing isolation affected their transition. This qualitative study follows the principles of constructivist grounded theory. Seven of 10 residents interviewed had cognitive impairment (mean age = 84 years). Four primary themes were elicited from the interviews focusing on residents' perceptions of their environment and highlights the value placed on privacy and control, the multifaceted feeling of loss during the pandemic, the importance of relationships as a source of comfort and pleasure, and resilience shown by residents in times of hardship. Our study indicates that residents experienced dichotomy and paradox during the pandemic, attempting to strike a balance between isolation and camaraderie, infection risk and mental health, and loss and resilience. The need for familial contact and socialization must be balanced against infection control measures.
(Edited publisher abstract)
Subject terms:
service transitions, older people, Covid-19, long term care, nursing homes, care homes, cognitive impairment, dementia, qualitative research, user views, residents;
Journal of Gerontological Nursing, 48(1), 2022, pp.35-41.
Publisher:
Healio
The purpose of the current pilot study was to determine the impact of an ambient activity technology, ABBY, on responsive behavior and family visiting in a long-term care (LTC) home. We were also interested in family and staff perceptions of the technology. A mixed methods research study was conducted over a 6-month period and data were collected using standardized measures and focus groups. Although no significant differences were noted in responsive resident behaviours, focus group data showed the ABBY enriched the care environment and provided additional opportunities for families and staff to engage residents. Although the introduction of a new technology can create challenges for staff, with time, these challenges can be overcome.
(Edited publisher abstract)
The purpose of the current pilot study was to determine the impact of an ambient activity technology, ABBY, on responsive behavior and family visiting in a long-term care (LTC) home. We were also interested in family and staff perceptions of the technology. A mixed methods research study was conducted over a 6-month period and data were collected using standardized measures and focus groups. Although no significant differences were noted in responsive resident behaviours, focus group data showed the ABBY enriched the care environment and provided additional opportunities for families and staff to engage residents. Although the introduction of a new technology can create challenges for staff, with time, these challenges can be overcome.
(Edited publisher abstract)
Subject terms:
residential care, family relations, carer views, staff views, digital technology, behaviour, participation, assistive technology, dementia, behaviour problems;
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;
Journal of Applied Research in Intellectual Disabilities, 35(1), 2022, pp.24-45.
Publisher:
Wiley
Background: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature. Method: A systematic literature search was conducted in PubMed, PsycINFO...
(Edited publisher abstract)
Background: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature. Method: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing. Results: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found. Conclusions: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.
(Edited publisher abstract)
Subject terms:
systematic reviews, literature reviews, severe learning disabilities, dementia;
Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.136-152.
Publisher:
Sage
Background and objectives: Residential care facilities (RCFs) strive to enhance autonomy for people with dementia and to enhance informal care provision, although this is difficult. This study explored how RCF staff can enhance autonomy and improve informal care by looking at the influence of interactions (contact and approachability between residents, staff members and informal caregivers...
(Edited publisher abstract)
Background and objectives: Residential care facilities (RCFs) strive to enhance autonomy for people with dementia and to enhance informal care provision, although this is difficult. This study explored how RCF staff can enhance autonomy and improve informal care by looking at the influence of interactions (contact and approachability between residents, staff members and informal caregivers) and the physical environment, including the use of technologies. Research design and methods: A realist evaluation multiple-case study was conducted using document analyses, eight semi-structured interviews with staff members and relatives and 56 hours of observations of residents across two RCFs aiming to provide person-centred care. Realist logic of analysis was performed, involving Context-Mechanism-Outcome configurations. Findings: The behaviour, attitudes and interactions of staff members with residents and informal caregivers appeared to contribute to the autonomy of people with dementia and enhance informal care provision. The physical environment of the RCFs and the use of technologies were less relevant to enhancing autonomy and informal care provision, although they can support staff members in providing person-centred care in daily practice. Discussion and implications: The findings add to those of other studies regarding the importance of interaction between residents, staff members and informal caregivers. The findings provide insight for other RCFs on how successfully to enhance autonomy for their residents and to improve informal care provision, as well as, more broadly, how to implement person-centred care.
(Edited publisher abstract)
Subject terms:
independence, residential care, informal care, staff-user relationships, person-centred care, environmental factors;
Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.5-20.
Publisher:
Sage
...conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results: Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively
(Edited publisher abstract)
Introduction: Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers’ guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. Method: Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers’ guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results: Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt (β = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (β = −0.10; p< 0.05; 95% CI: −0.18 to −0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (β = −0.07; p = 0.10; 95% CI: −0.16 to 0.01). Discussion: More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes.
(Edited publisher abstract)
Subject terms:
emotions, nursing homes, carers, relationships, family members, user satisfaction, staff-user relationships;
Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.153-180.
Publisher:
Sage
Older adults living with dementia are at risk for more complex health care transitions than individuals without this condition, non-impaired individuals. Poor quality care transitions have resulted in a growing body of qualitative empirical literature that to date has not been synthesized. The researchers conducted a systematic literature review by applying a meta-ethnography approach to answer...
(Edited publisher abstract)
Older adults living with dementia are at risk for more complex health care transitions than individuals without this condition, non-impaired individuals. Poor quality care transitions have resulted in a growing body of qualitative empirical literature that to date has not been synthesized. The researchers conducted a systematic literature review by applying a meta-ethnography approach to answer the following question: How do older adults with dementia and/or their caregivers experience and perceive healthcare transition: Screening resulted in a total of 18 studies that met inclusion criteria. The analysis revealed the following three categories associated with the health care transition: (1) Feelings associated with the healthcare transition; (2) processes associated with the healthcare transition; and (3) evaluating the quality of care associated with the health care transition. Each category is represented by several themes that together illustrate an interconnected and layered experience. The health care transition, often triggered by caregivers reaching a “tipping point,” is manifested by a variety of feelings, while simultaneously caregivers report managing abrupt transition plans and maintaining vigilance over care being provided to their family member. Future practice and research opportunities should be more inclusive of persons with dementia and should establish ways of better supporting caregivers through needs assessments, addressing feelings of grief, ongoing communication with the care team, and integrating more personalized knowledge at points of transition.
(Edited publisher abstract)
Subject terms:
dementia, carers, service transitions, user views, literature reviews, older people, carer views, social transitions;
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;