Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.648-676.
Publisher:
Sage
This article reports on findings of a scoping review aimed to map the published literature concerning the impact of Covid-19 on the care and quality of life of people living with dementia and their carers. Twenty-nine articles were included in the review. Three overarching themes were identified: (1) Impact on people with dementia – unmet and increased care needs; (2) Impact on carers – increased...
(Edited publisher abstract)
This article reports on findings of a scoping review aimed to map the published literature concerning the impact of Covid-19 on the care and quality of life of people living with dementia and their carers. Twenty-nine articles were included in the review. Three overarching themes were identified: (1) Impact on people with dementia – unmet and increased care needs; (2) Impact on carers – increased stress and burden and (3) Impact according to demographics. Overall, findings show that Covid-19 has led to a reduction in support from health and social services and to a move towards technology-based support. Furthermore, Covid-19 has had a negative impact on the care and quality of life of people living with dementia and their carers, and that this impact was influenced by the severity of dementia.
(Edited publisher abstract)
Subject terms:
stress, literature reviews, dementia, carers, Covid-19, social isolation, quality of life, carer views, user views, service provision, digital technology;
Journal of Advanced Nursing, early cite February 2022,
Publisher:
Blackwells Publishing
...home residents with dementia and care home staff from different care homes across the UK. Baseline and follow-up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. Results: In all, 42 family carers and care home staff participated at baseline, with 20 family
(Edited publisher abstract)
Aims: The aim of this study was to explore the impact of the pandemic on the emotional and mental well-being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. Design: Longitudinal, qualitative semi-structured interview study. Methods: Remote semi-structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow-up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. Results: In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. This study identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. Conclusions: The pandemic has had a detrimental impact on the lives of those surrounding care homes—from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. Impact: This is the first paper to highlight the effects of the long-lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.
(Edited publisher abstract)
Subject terms:
stress, wellbeing, Covid-19, care homes, mental health, social isolation, families, care workers, carers, carer views, user views, relationships, infection control;
Background and Objectives: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs...
(Edited publisher abstract)
Background and Objectives: The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs after a diagnosis of young-onset dementia (YOD). Research Design and Methods: Five electronic databases were searched for qualitative articles from inception to January 2020. Qualitative data were extracted from included articles and synthesized across articles using taxonomic analysis. Results: A total of 486 articles were obtained through the database and hand searches, and 322 articles were screened after the removal of duplicates. Sixty studies met eligibility criteria and are included in this meta-synthesis. Four themes emerged through meta-synthesis: (a) common psychosocial stressors experienced by both PWDs and CGs, (b) unique psychosocial stressors experienced by either PWDs or CGs, (c) common adaptive coping strategies employed by both PWDs and CGs, and (d) unique adaptive coping strategies employed by either PWDs or CGs. Within each meta-synthesis theme, subthemes pertaining to PWDs, CGs, and dyads (i.e., PWD and CG as a unit) emerged. Discussion and Implications: The majority of stressors and adaptive coping strategies of PWDs and CGs were common, supporting the use of dyadic frameworks to understand the YOD experience. Findings directly inform the development of resiliency skills interventions to promote adaptive coping in the face of a YOD diagnosis for both PWDs and CGs.
(Edited publisher abstract)
Subject terms:
literature reviews, qualitative research, carer views, user views, young onset dementia, coping behaviour, stress, psychosocial approach;
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: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey
(Edited publisher abstract)
Objectives: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic. The survey examined caregivers' stress and challenges faced during daycare service cessation, their perceived needs for continuation of daycare service, and observed changes in functional status of PwD. Regression analyses were performed to explore the associated factors of caregiving stress and preference for continuation of daycare service. Results: Family caregivers of PwD experienced greater caregiving stress after cessation of daycare service. Infection was their main challenge in caregiving, and their physical and emotional health was adversely affected by the longer time commitment with PwD under the stay-home policy. Older age of caregivers, greater emotional and communication problems of PwD, and more time spent with PwD were associated with greater caregiving stress. More than one-third of the participants preferred the continuation of daycare service during the pandemic. Conclusions: Policy makers should consider the well-being of PwD and their caregivers when planning infection control measures. Daycare service with enhanced infection controlled measures should remain available to PwD during the COVID-19 pandemic.
(Edited publisher abstract)
Subject terms:
day services, dementia, carer views, stress, wellbeing, day centres, Covid-19, qualitative research;
Background: People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting...
(Edited publisher abstract)
Background: People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. Methods: We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: (1) unfamiliar with, (2) familiar with, and (3) users of the DIT. Results:61% of respondents identified distress of LTCH staff about the harmful effects of isolation on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident’s room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. Conclusions: Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff.
(Edited publisher abstract)
Subject terms:
infection control, ethics, person-centred care, dementia, prevention, residential care, care homes, staff views, social isolation, stress;
This report sets out findings from the IDEAL COVID-19 Dementia Initiative (IDEAL CDI), which was established to identify concerns and issues faced by people living with dementia and their carers as a result of the coronavirus epidemic and the strict social restrictions imposed in England between March and June 2020. The report is based on interviews with people with dementia and carers from...
(Edited publisher abstract)
This report sets out findings from the IDEAL COVID-19 Dementia Initiative (IDEAL CDI), which was established to identify concerns and issues faced by people living with dementia and their carers as a result of the coronavirus epidemic and the strict social restrictions imposed in England between March and June 2020. The report is based on interviews with people with dementia and carers from the IDEAL cohort. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties. For many, social isolation increased anxiety. Some felt that lack of activity or lack of social contact caused a decline in their abilities to manage everyday tasks. Confusion about COVID-19 rules or difficulty remembering what to do led to anxiety when leaving the house. People felt that members of the public might not understand their particular needs. While some carers felt they were coping well, others experienced stress when having to leave the home because the person with dementia might not be safe if left alone. Some experienced increased strain in the caring relationship compounded by an uncertainty about future availability of respite. Some were concerned about the complex health needs of the person with dementia alongside COVID-19 risk and lack of personalised information. Both people with dementia and carers talked about the importance of access to safe outdoor space. People were anxious about how others would react or behave towards them regarding keeping a distance if they went out. Being connected to friends, family and wider community or support groups was important to help combat the effects of isolation. People from BAME communities worried about their increased vulnerability to the virus. A lack of trust in Government guidance and in health care services added to their anxiety. However, some benefitted from strong community and faith group involvement.
(Edited publisher abstract)
Subject terms:
Covid-19, dementia, carers, infection control, social isolation, stress, mental health problems, user views, carer views;
Dementia: the International Journal of Social Research and Practice, 20(1), 2021, pp.161-187.
Publisher:
Sage
To address the need for accessible, affordable, and sustainable Alzheimer's disease and related dementia caregiver interventions with minority populations, we developed the Senior Companion Program Plus, a three-phase pilot study that used a mixed methods experimental design. The intent was to determine if participation in a lay provider, peer-led psychoeducational intervention designed...
(Edited publisher abstract)
To address the need for accessible, affordable, and sustainable Alzheimer's disease and related dementia caregiver interventions with minority populations, we developed the Senior Companion Program Plus, a three-phase pilot study that used a mixed methods experimental design. The intent was to determine if participation in a lay provider, peer-led psychoeducational intervention designed for African American Alzheimer's disease and related dementia caregivers (N = 16) improved caregiver burden and/or stress, coping skills, and social support. Focus groups with Senior Companions informed the intervention design. Quantitative results indicated that caregivers experienced improvement in their overall level of social support and well-being in meeting basic needs. Qualitative findings suggested that caregivers experienced improvement in their knowledge about the disease, experienced increased coping with Alzheimer's disease and related dementia caregiving, and reported benefits of using a lay provider model. Overall, the data suggest that the Senior Companion Program Plus is a promising intervention for African American Alzheimer's disease and related dementia caregivers.
(Edited publisher abstract)
Subject terms:
Alzheimers disease, dementia, black and minority ethnic people, intervention, carers, stress, older people;
The American Journal of Occupational Therapy, 75(1), 2021,
Publisher:
AOTA Press
Place of publication:
Bethesda, MD
Importance: People with dementia require tailored interventions to support participation and performance in their desired occupations, and informal caregivers need interventions that reduce caregiving burden to enable them to continue with their roles. Objective: This systematic review investigated whether home-based occupational therapy interventions for adults with dementia and their informal...
(Edited publisher abstract)
Importance: People with dementia require tailored interventions to support participation and performance in their desired occupations, and informal caregivers need interventions that reduce caregiving burden to enable them to continue with their roles. Objective: This systematic review investigated whether home-based occupational therapy interventions for adults with dementia and their informal caregivers optimized care recipients’ performance of daily occupations and reduced caregiving burden and improved caregivers’ sense of competence. Data Sources: Eight databases were searched from 1946 to November 2019 using MeSH terms, keywords, and subject headings as appropriate for each database. Inclusion criteria were quantitative studies investigating the effects of home-based therapy provided by a qualified occupational therapist for adults with dementia and their informal caregivers. Study Selection and Data Collection: Study selection, data collection, and methodological quality assessments using the Critical Appraisal Skills Programme criteria tool were performed independently by two reviewers. Data analysis involved a two-stage process. Findings: From 1,229 articles identified through searches, 970 titles and abstracts were screened for eligibility after removal of duplicates. Twenty studies reported in 22 articles were included. Moderate evidence supported interventions provided jointly for adults with dementia and their informal caregivers using a combination of intervention strategies. Included studies demonstrated high risk of bias, particularly in blinding of outcome assessments. Conclusions and Relevance: Combining individualized interventions framed in client-centeredness can enhance occupational performance for adults with dementia, reduce caregiving burden, and improve informal caregivers’ sense of competence. Further research on leisure and home management occupations is warranted
What This Article Adds: The findings provide evidence supporting the effectiveness of home-based occupational therapy for people with dementia and their informal caregivers for consideration by funders of services.
(Edited publisher abstract)
Subject terms:
systematic reviews, occupational therapy, home care, carers, informal care, intervention, evaluation, dementia, stress, person-centred care, evidence;
International Journal of Geriatric Psychiatry, 36(2), 2021, pp.360-367.
Publisher:
Wiley
Objectives: Sense of coherence (SOC) is increasingly recognized as an important health determinant, particularly for mental health. Part of the evidence comes from informal caregivers in diverse clinical conditions. The extent to which SOC influences caregiving outcomes, however, is relatively under‐researched in dementia, particularly regarding positive experiences. We analysed the association...
(Edited publisher abstract)
Objectives: Sense of coherence (SOC) is increasingly recognized as an important health determinant, particularly for mental health. Part of the evidence comes from informal caregivers in diverse clinical conditions. The extent to which SOC influences caregiving outcomes, however, is relatively under‐researched in dementia, particularly regarding positive experiences. We analysed the association of SOC with dementia caregivers' subjective burden, psychological distress and positive aspects of care. Methods/Design: This is a secondary analysis of cross‐sectional data from the Lisbon study of Families of Persons with Dementia, involving a convenience sample of 99 primary caregivers of community‐dwelling patients of neurology and psychiatry services. SOC was assessed with the Orientation for Life Scale. Measures of caregivers' outcomes were: the Zarit Burden Interview, the General Health Questionnaire for psychological distress and the Positive Aspects of Caregiving scale. Analyses controlled for demographics, caregiving arrangements, objective burden, social support, patients' neuropsychiatric symptoms and dementia stage. Results: Lower SOC was associated with higher psychological distress (p = 0.001). No significant associations were found for subjective burden (p = 0.081) or positive aspects of caregiving (p = 0.688). Additional analyses showed that lower SOC was associated with less emotional support (p < 0.001) and past psychiatric illness (p = 0.044). Conclusions: These findings support previous research suggesting that SOC is protective for psychological distress, and extend evidence to the positive aspects of care in dementia. The cross‐sectional design and small‐scale convenience sampling preclude both causality presumptions and generalizability. SOC assessments may be useful to define subgroups of dementia caregivers at risk for anxiety and depression.
(Edited publisher abstract)