COVID-19 resources on Dementia

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Is it worth it? Carers’ views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic

International Journal of Geriatric Psychiatry

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.

Last updated on hub: 14 January 2022

The lived experience of older adults transferring between long-term care facilities during the COVID-19 pandemic

Journal of Gerontological Nursing

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.

Last updated on hub: 11 January 2022

Housing and health: a reading list

House of Commons

This reading list draws together reports and other material demonstrating the interconnectedness of housing and health. It draws attention to literature on the links between housing and major medical conditions, including Covid-19, dementia and mental health problems; the impact of different types of housing on health, looking at the private rented sector, housing with care, social housing and homelessness; and the various collaborative partnerships in place working to combat these issues. The list comprises a selection of publications – it is not intended to be an exhaustive list.

Last updated on hub: 11 January 2022

The story of an emerging crisis: the impact of COVID-19 on care home residents with dementia in the UK

International Journal of Care and Caring

The impact of COVID-19 in UK care homes has been significant ‐ for staff, residents and people with dementia. Given the rapidly changing circumstances, the media (limitations notwithstanding) have reported vital insights from the front line. A qualitative analysis of news articles across three time points reveals the story of an emerging crisis in UK care homes, beginning with a sole focus on hospital care and resulting in tragically high death rates. This public-facing narrative has potential to: advocate for increased resources in care homes; drive government accountability; highlight improvements for care practices; and bear witness to the experiences of a vulnerable population.

Last updated on hub: 07 January 2022

How Meeting Centres continue to support people affected by dementia: report on UK COVID-19 impact

Working with Older People

Purpose: Because of COVID-19 restrictions, Meeting Centres (MCs) for people affected by dementia in the UK ceased to meet physically but continued to provide remote support. The aim was to understand the extent to which MCs were able to operate when physical meetings were not possible and how they achieved particularly in relation to the adaptation and coping model and practical, emotional and social adjustment. Design/methodology/approach: Semi-structured interviews and focus groups were conducted with people affected by dementia, staff, volunteers, managers and trustees from MCs. Data were collected on the type and quantity of contact MCs had with people affected by dementia during lockdown. Data were coded and mapped against adaptation and coping strategies, i.e. practical understanding and empowerment, optimising emotional well-being and opportunities for social engagement. Findings: A range of remote approaches, both technological (e.g. using online platforms) and non-technological (e.g. newsletters and post) were implemented alongside limited face-to-face contact. Regular MC activities were adapted using the different approaches. It was possible to map all the adaptation and coping model support strategies to the activities delivered in this way. MCs were able to adapt rapidly to continue to support people to adjust to change. Social implications: Moving forward, combining approaches (usual MC and remote) means person-centred support could be optimized, addressing social isolation and reaching those who cannot attend MCs. Originality/value: This paper offers new insight into the extent to which community-based support for people with dementia can continue when face-to-face contact is not possible because of COVID-19.

Last updated on hub: 06 January 2022

Are we allowed to visit now? Concerns and issues surrounding vaccination and infection risks in UK care homes during COVID-19

Age and Ageing

Background: vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. Methods: family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. Results: across 62 baseline and follow-up interviews with family carers (n = 26; 11) and care home staff (n = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. Conclusions: we make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff.

Last updated on hub: 23 December 2021

Living in a care home during COVID-19: a case study of one person living with dementia

Quality in Ageing and Older Adults

Purpose: This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach: The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown. Findings: Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant’s ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation. Research limitations/implications: The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies. Practical implications: Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity. Originality/value: Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia.

Last updated on hub: 20 December 2021

Social care-related quality of life of people with dementia and their carers in England

Health and Social Care in the Community

People with dementia and their carers are a growing subgroup of people who use community-based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care-related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy-report when someone is unable to self-report. The ASCOT-Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy-reported by carers) and their carers. Data were collected via a self-administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self-complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. The researchers recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self- and proxy-report. Key influences on carers’ own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic-related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.

Last updated on hub: 20 December 2021

Living with dementia during the COVID-19 pandemic: coping and support needs of community-dwelling people with dementia and their family carers. Research findings from the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI)

University of York

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.

Last updated on hub: 07 December 2021

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

BMC Geriatrics

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.

Last updated on hub: 19 November 2021

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