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;
Objective: To explore the factors associated with the cost of care and admission to long-term care (LTC) for people with dementia living at home in Ireland. Methods: Data on formal and informal resource use for people with dementia, and their LTC admission, were obtained from a national study of spousal dementia caregivers. Functional status was measured using the Bristol Activities of Daily...
(Edited publisher abstract)
Objective: To explore the factors associated with the cost of care and admission to long-term care (LTC) for people with dementia living at home in Ireland. Methods: Data on formal and informal resource use for people with dementia, and their LTC admission, were obtained from a national study of spousal dementia caregivers. Functional status was measured using the Bristol Activities of Daily Living Scale, while behavioural and psychiatric symptoms were evaluated using the Neuropsychiatric Inventory. Multivariable regression analysis was used to model costs and the predictors of LTC admission. Results: Physical and cognitive symptoms were significantly associated with costs. Severely impaired functional ability was associated with a €2,308 increase in mean total 30-day monthly costs. Psychosis was associated with a €335 increase in primary and community 30-day monthly care costs. These factors also make it more likely that a person with dementia is admitted to LTC. Having an older caregiver also increases the risk of admission to LTC, while living in a rural area and having a female caregiver reduce the likelihood of admission. Conclusions: Dependency matters for the cost of care. Physical and cognitive symptoms, caregiver age and gender, and geographic location are significant predictors of admission to LTC.
(Edited publisher abstract)
Subject terms:
costs, dementia, long term care, admission to care;
Dementia: the International Journal of Social Research and Practice, 20(1), 2021, p.47–65.
Publisher:
Sage
Background: This study analysed the cost of intensive home care packages for people with dementia living on the boundary of home care and residential care facilities in Ireland. The cost of community-based services and supports, including informal care and private out-of-pocket expenditure, was compared to the cost of public and private residential care. Methods: The study recruited 42 people...
(Edited publisher abstract)
Background: This study analysed the cost of intensive home care packages for people with dementia living on the boundary of home care and residential care facilities in Ireland. The cost of community-based services and supports, including informal care and private out-of-pocket expenditure, was compared to the cost of public and private residential care. Methods: The study recruited 42 people with dementia and/or their caregivers, who were living on the boundary of home care and residential care, to an in-depth study on the cost of care. The Resource Utilization in Dementia scale was used to collect data on the utilization of standard formal care and informal care by people with dementia in receipt of an intensive home care package. Information on private out-of-pocket expenditure on care was also collected. Unit costs were assigned and community-based care was compared with public and private residential care alternatives. Results: The average weekly cost of home care, including the intensive home care package, standard formal community care provision, medications, consumption and housing, was estimated at €1127. This is lower than the average weekly cost of public long-stay care facilities (€1526) and around the same as for private nursing home fees in the Dublin region (€1149). When the opportunity cost valuation of informal care is included, the cost of home care is higher than all types of residential care. Adding private care expenditure further inflates the cost of home care. Conclusion: Keeping highly dependent people with dementia living at home is not cheap and raises questions about optimal resource allocation on the boundary of home care and residential care. Even with significant public spending on intensive home care packages, family care costs remain high. So too does private out-of-pocket expenditure on care for some people with dementia.
(Edited publisher abstract)
Subject terms:
dementia, residential care, carers, home care, care homes, costs;
Dementia: the International Journal of Social Research and Practice, 20(6), 2021, pp.1958-1970.
Publisher:
Sage
Public policy in Ireland recognises that people living with early-stage dementia are likely to require considerable emotional support following diagnosis; anxiety and depression are very common within this population. Yet psychosocial interventions to support emotional health of people who receive a diagnosis of dementia are sparse; there is no mention of counselling and psychotherapy for people...
(Edited publisher abstract)
Public policy in Ireland recognises that people living with early-stage dementia are likely to require considerable emotional support following diagnosis; anxiety and depression are very common within this population. Yet psychosocial interventions to support emotional health of people who receive a diagnosis of dementia are sparse; there is no mention of counselling and psychotherapy for people living with early dementia in national guidelines, despite a promising evidence base that has amassed internationally in recent decades. This article explores the psychological impact of receiving a diagnosis and the scant offering of emotional and psychological post-diagnostic support that is available for people living with early-stage dementia in Ireland. The author draws attention to the curious tension between the widely recognised psychological benefits of early diagnosis of dementia and the jarring delay in disclosure that continues to prevail across Irish healthcare delivery. The evidence base for counselling and psychotherapy for people living with mild to moderate dementia in regard to anxiety and depression is discussed. Recommendations are made for further research into specialist counselling and psychotherapy interventions with a strong involvement from people living with dementia embedded in both research and design. The author also calls for public policy to reflect the preference of people living with dementia for earlier diagnosis and to highlight the appetite and ability of people living with dementia to engage in psychotherapeutic interventions.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 20(6), 2021, p.2109–2132.
Publisher:
Sage
Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified...
(Edited publisher abstract)
Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.
(Edited publisher abstract)
Health and Social Care in the Community, 29(5), 2021, pp.e97-e106.
Publisher:
Wiley
...stakeholders working with and on behalf of these population groups understand, conceptualise and capitalise on the involvement of place in CLTs has not been investigated. This paper aims to address this deficit and explores the perspectives of key national and local actors on three CLTs - dementia, bereavement and forced migration - and their relationship with place and exclusion. The analysis involved 18
(Edited publisher abstract)
Major transitions in older people's lives can give rise to multifaceted forms of social exclusion, with subsequent impacts for later life health and well-being. With place now a central concept within policy on ageing and community care, there is the potential that it may offer new pathways to support older people undergoing these critical life transitions (CLTs). However, how policy and practice stakeholders working with and on behalf of these population groups understand, conceptualise and capitalise on the involvement of place in CLTs has not been investigated. This paper aims to address this deficit and explores the perspectives of key national and local actors on three CLTs - dementia, bereavement and forced migration - and their relationship with place and exclusion. The analysis involved 18 semi-structured interviews with stakeholders from policy, practice and advocacy spheres related to the CLTs and ageing in general. Interviews highlighted the differences across stakeholders in perceived exclusionary impacts, and the different degrees to which place is conceptualised in relation to these transitions. Findings illustrate the lack of a holistic policy approach to the needs of older people experiencing CLTs that impedes our capacity to truly harness place in supporting older people. The article concludes by arguing for a more nuanced reconstruction of place and its meanings in the context of CLTs.
(Edited publisher abstract)
Subject terms:
policy, social transitions, older people, place-based approach, social exclusion, staff views;
International Journal of Care and Caring, 5(3), 2021, pp.469-487.
Publisher:
Policy Press
Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were...
(Edited publisher abstract)
Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia.
(Edited publisher abstract)
Subject terms:
young onset dementia, carer views, carers, dementia, stigma, loss;
Aging and Mental Health, 25(10), 2021, pp.1869-1876.
Publisher:
Taylor and Francis
Background: Health policy in many countries is underpinned by a commitment to support dependent older people to remain in their own home for as long as possible and practicable. This study explores factors affecting both admission to long-stay residential care (LSRC) and mortality among people with and without dementia who are currently living at home with intensive formal care support. Methods...
(Edited publisher abstract)
Background: Health policy in many countries is underpinned by a commitment to support dependent older people to remain in their own home for as long as possible and practicable. This study explores factors affecting both admission to long-stay residential care (LSRC) and mortality among people with and without dementia who are currently living at home with intensive formal care support. Methods: This is a cross-sectional study based on administrative data collected on 429 dependent older people in Ireland, 269 of whom were people with dementia. A cause-specific hazard model was used to investigate the hazard of admission to LSRC, while accounting for mortality as a competing risk and vice versa. Results: Admission to LSRC was higher for people with dementia relative to people without and for those receiving lower amounts of informal care. The hazard of mortality was significantly higher for older people aged 85+, whereas it was lower for individuals with a medium level of dependency relative to those with high levels of dependency. The hazard of mortality was also influenced by the amount of informal care provision. Conclusion: People with dementia are more likely to be admitted to LSRC than people without. Care for people with dementia needs to be more specialised and personal, and intensity of provision should not be equated to the number of care hours on offer. Informal care provision may help to prevent admission to LSRC. Advanced age, physical dependency and informal care provision affect mortality, raising interesting issues in relation to resource allocation.
(Edited publisher abstract)
Subject terms:
admission to care, residential care, dementia, older people;
Health and Social Care in the Community, 29(6), 2021, pp.1980-1989.
Publisher:
Wiley
Despite the benefits of utilising community-based care services (CBS) for people with dementia and their caregiver being well established, people with dementia and caregivers use fewer services in comparison to other people in need of care. While societal, cultural and logistical factors effecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental...
(Edited publisher abstract)
Despite the benefits of utilising community-based care services (CBS) for people with dementia and their caregiver being well established, people with dementia and caregivers use fewer services in comparison to other people in need of care. While societal, cultural and logistical factors effecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental limitations created by one's own self that prevents open communication of thoughts and feelings, and their effect on CBS use is limited. This paper explores internal emotional barriers on caregivers' use of CBS within the Irish Healthcare System. Professional Healthcare Providers were also interviewed as a preliminary indicator of their awareness of these internal emotional barriers and their impact on caregivers' use of CBS. Using interpretive description methodology, interviews with 20 caregivers and fourteen dementia professional healthcare providers were transcribed and a thematic analysis methodology applied to illuminate themes/patterns within participants’ subjective perceptions of caregivers emotional barriers to using CBS. Four themes emerge: reluctance to question general practitioner (GP) authority; embarrassment during level of care requirement reviews; sense of obligation to provide all care; and fear of stigma. Caregivers interviewed were reluctant to communicate concerns with professional healthcare providers (PHPs), thereby reducing the PHP’s awareness of these barriers and delaying/preventing use of CBS. As key gatekeepers within the care pathway, GPs should address the uneven power dynamic with the caregiver through user-centred models of care, which actively encourage open dialogue, and receive training to identify the indicative behaviours of internal emotional barriers and empower the caregiver to communicate their feelings/concerns directly.
(Edited publisher abstract)
Subject terms:
access to services, carers, dementia, community care, health professionals, staff views, carer views, emotions;
Journal of Interprofessional Care, 35(6), 2021, pp.852-862.
Publisher:
Taylor and Francis
...of each decision in relation to topic, time and place for those with impaired or fluctuating capacity. This study set out to explore experiences of assisted decision making (ADM) in acute care hospitals in Ireland and to identify the barriers and enablers to ADM for older people and people with dementia from the perspective of different Health and Social Care Professionals (HSCPs) involved in their care
(Edited publisher abstract)
In recent years, there has been a move toward a more human rights-based approach to the issue of supported and assisted decision-making (ADM) with legislative changes strengthening the formal right for older people to participate in care planning and decision-making. Ireland’s Assisted Decision-Making (Capacity) Act, 2015 breaks from traditional views of capacity to consider the uniqueness of each decision in relation to topic, time and place for those with impaired or fluctuating capacity. This study set out to explore experiences of assisted decision making (ADM) in acute care hospitals in Ireland and to identify the barriers and enablers to ADM for older people and people with dementia from the perspective of different Health and Social Care Professionals (HSCPs) involved in their care. The researchers carried out 26 semi-structured audio-recorded interviews with a convenience sample of HSCPs working in two acute hospitals and subsequently confirmed the results. HSCPs identified several barriers to, and enablers of, ADM in acute hospitals that were categorized into three key themes: Building meaningful engagement with older people and their family carers; barriers and enablers associated with interprofessional collaboration and barriers and enablers associated with the environment. The findings suggest that despite concrete policy and legislative underpinnings to ADM, this was not always evident in practice and suggests the need for specialized education and training on ADM in practice settings.
(Edited publisher abstract)