COVID-19 resources on Dementia

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Advocating every single day” so as not to be forgotten: factors supporting resiliency in adult day service centers amidst COVID-19-related closures

Journal of Gerontological Social Work

Adult day centers (ADCs) are nonresidential settings that support the health and social needs of vulnerable older adults. Due to ADCs’ congregate nature and participants’ compromised health status, many ADCs have been forced to close during the COVID-19 pandemic. It is unknown how closures have impacted service delivery at ADCs. Guided by the Resiliency Activation Framework, we (a) identified consequences resulting from closures of ADCs during the COVID-19 pandemic and (b) described factors that have enabled the ADC community to remain resilient in the wake of challenges brought on by the pandemic. We conducted 2 focus groups in California (n = 12), and individual interviews with ADC staff members (n = 8) in 7 other states. The results of a directed content analysis revealed perceived declines in physical, cognitive, and mental health of ADC users and increased caregiver strain. Access to human, social, economic, and political capital were essential for supporting ADCs in buffering the impacts of the pandemic on the older adults they serve but were not consistently available. Research is urgently needed that quantifies the impacts of the pandemic on ADC users and their caregivers to inform policy and advocacy efforts in the wake of the pandemic.

Last updated on hub: 03 March 2021

Allowing visitors back in the nursing home during the COVID-19 Crisis: a Dutch national study into first experiences and impact on well-being

Journal of the American Medical Directors Association

Objectives: To prevent and control COVID-19 infections, nursing homes across the world have taken very restrictive measures, including a ban for visitors. These restrictive measures have an enormous impact on residents' well-being and pose dilemmas for staff, although primary data are lacking. A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic. This study reports the first findings on how the guideline was applied in the local context; the compliance to local protocols; and the impact on well-being of residents, their family caregivers, and staff. Design: A mixed-methods cross-sectional study was conducted. Setting and Participants: In total, 26 nursing homes were permitted to enlarge their possibilities for allowing visitors in their facility. These nursing homes were proportionally representative of the Netherlands as they were selected by their local Area Health Authority for participation. At each nursing home, a contact person was selected for participation in the current study. Methods: A mixed-methods cross-sectional study was conducted, consisting of questionnaire, telephone interviews, analyses of documentation (ie, local visiting protocols), and a WhatsApp group. Results: Variation in local protocols was observed, for example, related to the use of personal protective equipment, location, and supervision of visits. In general, experiences were very positive. All nursing homes recognized the added value of real and personal contact between residents and their loved ones and indicated a positive impact on well-being. Compliance with local guidelines was sufficient to good. No new COVID-19 infections were reported during this time. Conclusions and Implications: These results indicate the value of family visitation in nursing homes and positive impact of visits. Based on these results, the Dutch government has decided to allow all nursing homes in the Netherlands to cautiously open their homes using the guidelines. More research is needed on impact and long-term compliance.

Last updated on hub: 21 August 2020

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

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

BMC Geriatrics

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.

Last updated on hub: 09 March 2022

Caring safely at home

Social Care Institute for Excellence

SCIE's video-based resource designed for unpaid/informal carers. You may be caring for family members, friends or neighbours at home.

Last updated on hub: 11 June 2020

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

BMC Health Services Research

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. This study aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, this study focussed on key concerns and areas of decision making at the end of life. Methods: This study conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May-June 2020. Results: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

Last updated on hub: 23 September 2021

Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands

Aging and Mental Health

Objectives: From the perspective of the nursing home (NH) practitioners, to gain understanding of (1) whether challenging behavior in NH residents changed during the COVID-19 measures, (2) whether the practitioners’ involvement in the treatment of challenging behavior changed, (3) what can be learned from the experience of NH staff. Methods: A mixed methods study with a survey in 323 NH practitioners (psychologists, elderly care physicians, nurse practitioners) in the Netherlands, and in-depth interviews in 16 NH practitioners. Nonparametric analyses were used to compare estimated proportions of residents with increased and with decreased challenging behavior. Content analyses were conducted for open-ended questions and in-depth interviews. Results: Participants reported changes in challenging behavior with slightly higher proportions for increased (Q1/Mdn/Q3: 12.5%, 21.7%, 30.8%) than for decreased (8.7%, 14.8%, 27.8%, Z = –2.35, p = .019) challenging behavior. Half of the participants reported that their work load increased and work satisfaction worsened during the measures. Different strategies were described to respond to the effects of COVID-19 measures, such as video calls, providing special areas for residents to meet their loved ones, adjusting activities, and reducing the exposure to negative news. Conclusions: Because COVID-19 measures resulted in both increased and decreased challenging behavior in NH residents, it is important to monitor for their potential long lasting effects. Increased work load and worsened work satisfaction of the NH staff, together with the changes in type of challenging behavior, indicate that the harmful effects of the anti-pandemic measures should be taken seriously.

Last updated on hub: 07 July 2021

Coronavirus (COVID-19): information for families looking after someone with dementia

Dementia UK

Brings together advice and guidance for carers of people with dementia during the Covid-19 pandemic. Topics covered include: the ongoing challenges for people with dementia during coronavirus; questions and answers relating to the implications of coronavirus in specific settings; advice for people with dementia around face coverings; and care homes and the coronavirus outbreak.

Last updated on hub: 08 October 2020

Coronavirus (COVID-19): tips for the housing sector on supporting someone affected by dementia

Housing LIN

This briefing sets out a number of top tips for the housing sector, operators and commissioners of specialist housing – such as extra care or retirement housing – or general needs housing, on supporting people affected by dementia during the coronavirus pandemic. It also signposts to a selection of useful links and further practical advice. People living with dementia normally thrive on familiarity; familiar faces, a familiar environment, familiar food, and familiar routines, all of which may be compromised by the enforced period of isolation necessary to fight the coronavirus. The top tips highlight some of the best practice and legal issues in supporting decisions that might need to be made about health and wellbeing during the COVID-19 outbreak; considers how to continue to provide practical assistance, support and manage risks; and provides information on maintaining meaningful activity and minimising loneliness during this period of enforced isolation.

Last updated on hub: 11 August 2020

Coronavirus: information for people affected by dementia

Alzheimer's Society

Advice and information for people who are living with dementia and their carers during the Coronavirus (COVID-19) pandemic. It includes advice for carers who live with a person with dementia, information on how best to support someone living alone and tips for supporting for someone living with dementia from a distance. The guide also includes activity ideas, including online and digital activities; and links to additional resources.

Last updated on hub: 26 March 2020

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