COVID-19 resources on dementia

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Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

Aging and Mental Health

Objectives: Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Method: PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. Results: 50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. Conclusions: PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.

Last updated on hub: 15 October 2020

Achieving safe, effective, and compassionate quarantine or isolation of older adults with dementia in nursing homes

American Journal of Geriatric Psychiatry

Nursing homes are facing the rapid spread of COVID-19 among residents and staff and are at the centre of the public health emergency due to the COVID-19 pandemic. As policy changes and interventions designed to support nursing homes are put into place, there are barriers to implementing a fundamental, highly effective element of infection control, namely the isolation of suspected or confirmed cases. Many nursing home residents have dementia, associated with impairments in memory, language, insight, and judgment that impact their ability to understand and appreciate the necessity of isolation and to voluntarily comply with isolation procedures. While there is a clear ethical and legal basis for the involuntary confinement of people with dementia, the potential for unintended harm with these interventions is high, and there is little guidance for nursing homes on how to isolate safely, while maintaining the human dignity and personhood of the individual with dementia. This commentary discusses strategies for effective, safe, and compassionate isolation care planning, and present a case vignette of a person with dementia who is placed in quarantine on a dementia unit.

Last updated on hub: 08 October 2020

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

Robotics in care: a moment of opportunity: how robotic technology can transform global social care delivery

PA Consulting Group

This report explores how robotic technology offers an opportunity to transform social care in the wake of COVID-19. The pandemic has raised the prominence of technology in care, meaning many workers now have direct experience of how it can help them do their jobs better, faster and with reduced risk. The report argues that now is the time to rethink and reset traditional care service delivery and leaders must adopt a bolder, more ambitious approach to trialling and deploying robotic technologies to help meet the social care needs of vulnerable residents beyond the crisis. The range of technologies available to leaders includes: collaborative robots (‘cobots’) – designed to be used in conjunction with human; semi-humanoid robots – smart robots with human-like characteristics to facilitate social interaction with people living with dementia or Asperger’s; robotic animals – which can serve as companions to people living with dementia or learning disabilities; digital assistants – voice-controlled devices and services that support people with care needs at home; medicine robots – automated medicine dispensers; and automated call services – to check on vulnerable people, helping local authorities remain in touch and respond sooner when a need emerges. The report describes three practical steps leaders can take to capitalise on robotic technology in earnest: define your strategy based on human outcomes; trial technologies with the aim of deploying at scale; and collaborate with the wider social care ecosystem.

Last updated on hub: 05 October 2020

Dementia wellbeing in the COVID-19 pandemic

NHS England

This document takes the wellbeing pathway for dementia and sets out the adjustments and amendments needed to respond to the COVID-19 pandemic. It covers six domains, which include: preventing well; diagnosing well; treating well; supporting well; living well; and dying well. The guide highlights key priorities and actions for each step in the pathway and provides links to further information and guidance. The guide spans community, in-patient and other health and social care settings and signposts to useful resources from a variety of organisations. This resource is primarily for clinicians working with people with dementia, but can also be used by carers and people with dementia. A resource section for people with dementia and their carers is also included.

Last updated on hub: 29 September 2020

Impact and mortality of COVID-19 on people living with dementia: cross-country report

International Long-term Care Policy Network

This report brings together international evidence on the impact of the COVID-19 pandemic on people living with dementia and an overview of international policy and practice measures to mitigate the impact of COVID-19 among people living with dementia. It draws on data from nine countries: United Kingdom (UK), Spain, Ireland, Italy, Australia, the United States (US), India, Kenya and Brazil. The analysis indicates that the share of people whose deaths were linked to COVID-19 in care homes who had dementia ranges from 29% to 75% across those countries. Within countries, people with dementia account for 25% of all COVID-19 related deaths in England and Wales, 31% in Scotland and 19% in Italy. In many places, the basic human rights of people with dementia may have been compromised during the pandemic. These rights include access to Intensive Care Units, hospital admissions, health care and palliative care. The controversial ban on visits (including spouses and care partners) to care homes across the world, have kept people with dementia detached from essential affective bonds and provision of family care for many months. The report argues that guidance and tools to support institutions and practitioners to respond better to the needs of people with dementia during the pandemic are needed as a matter of urgency. Confinement, isolation and many of the challenges brought about by the pandemic are detrimental to the cognitive and mental health symptoms in people with dementia across the world, both those living in the community and care homes. This report offers a list of short-term and long-term actions needed to ensure that people with dementia are not being left behind in this pandemic or future ones.

Last updated on hub: 28 September 2020

A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers

International Journal of Geriatric Psychiatry

Objectives: The aim of this national survey was to explore the impact of COVID‐19 public health measures on access to social support services and the effects of closures of services on the mental well‐being of older people and those affected by dementia. Methods: A UK‐wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020.The survey captured demographic and postcode data, social support service usage before and after COVID‐19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well‐being. Results: 569 participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t‐tests and X2‐tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID‐19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well‐being in unpaid carers and older adults. Conclusions: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

Last updated on hub: 21 September 2020

Report of the Social Care Taskforce's Older People and People Affected by Dementia Advisory Group

Department of Health and Social Care

This is the report of the Older People and People Affected by Dementia Advisory Group, established to make recommendations to feed into the work of the Social Care Sector COVID -19 Support Taskforce. The recommendations cover the following areas: restoring and sustaining contact with visitors in care homes; restoring care services and assessments; reinstating and sustaining community-based services and support; restoring and sustaining access to health care; ensuring effective safeguarding; and planning for and managing outbreaks. The report calls for all care settings and providers to have sufficient PPE; regular and ongoing testing of care staff and care recipients; the testing regime to be reliable and timely in its operation and resultant data to be shared with relevant NHS bodies and professionals, as well as providers; the flu vaccination programme to be unparalleled in its scope and ambition, and reach out to all social care staff and recipients in all settings, and informal carers too, supported by mass marketing; the financial resilience of care providers to be kept under constant review, with plans in place and regularly updated by CQC, central and local Government, to mitigate any significant market failure; total and available care capacity should be published weekly; and the ongoing challenges in data sharing and data governance between health and social care settings must be resolved by September 2020.

Last updated on hub: 21 September 2020

Supporting you to make decisions while caring for someone living with dementia during Coronavirus (COVID19) and beyond

University College London (UCL)

This document guides carers of people living with dementia through the process of making difficult decisions during the Covid-19 pandemic whilst taking into consideration wishes and preferences of those they care for and the legal aspects of making decisions. The guide covers a number of decisions carers may need to make if the person they are caring for has or is suspected to have Covid-19. These include decisions such as how to care for them if they are unable to visit them, whether they should go to hospital if they become unwell and what it means to have a do not attempt cardiopulmonary resuscitation order. The guide also provides useful tips for carers such as the Covid-19 symptoms to watch out for which may differ to the commonly recognised symptoms, where to find help and support when making decisions and how to look after yourself as a carer. Topics covered include: thinking about any existing advance care plans; wishes and preferences; legal aspects of decision making; managing care at home; supporting someone in a care home; admitting them to hospital if they are very unwell; support for carers; and how carers can look after themselves during coronavirus and beyond.

Last updated on hub: 15 September 2020

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

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