As a research charity we are very keen to support studies that help advance understanding of the lives of people with Lewy body dementia, their families and carers, in addition to funding research through our grants programme.

Throughout the Covid-19 pandemic we have been supporting a project led by Dr Clarissa Giebel, from the University of Liverpool and the National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC).

The research involved interviews with people living with dementia to ask them about their access to social support services during the pandemic, as well as their experiences living in care homes.  Some of our supporters took part in the interviews and we are very grateful to you for sharing your experience.

On 15^th February we hosted a webinar with Dr Giebel who gave an overview of the study so far and the findings.  You can watch this back on our YouTube channel here.

Research Findings

The findings of the research have been published in several important journals (links below) and the key findings are found in this policy briefing.

1. The COVID-19 pandemic and public health measures implemented in response have significantly impacted upon the delivery and access of social support services (e.g. day care centres, peer support groups, befriending services) for people living with dementia, carers, and older adults in the UK.
2. Being unable to access social support services has a detrimental effect on people’s mental health and their capacity to live well and independently in the community for as long as possible. It is vital that these services are better enabled to deliver high quality support both throughout the present crisis, but also afterwards.
3. Our UK-wide COVID-19 dementia and ageing social care research found that nearly all social support services closed down during the first national lockdown, with very few providing any form of remote assistance. Among other effects, this caused heightened levels of uncertainty, faster deterioration in those people living with dementia, and forced many unpaid carers to take on additional responsibilities.
4. Carers should not be forgotten. They are vital in providing support to people living with dementia, with unpaid carers providing over £10.1 billion worth of dementia care each year in England. They too require psychological and other tangible supports.
5. Recommended changes to the delivery and access of social support services include clearer direction from government on how old age social support services should be, or could be, delivered; the tailoring of services so that they are more flexible in their delivery; and supporting people living with dementia and older adults to access support services provided remotely better.

Journal articles

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

Ageing and Mental Health

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study.

BMC Geriatrics

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

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey.

BMJ Open

The potential dangers of not understanding COVID-19 public health restrictions in dementia: “It’s a groundhog day – every single day she does not understand why she can’t go out for a walk”.

BMC Public Health

“A piece of paper is not the same as having someone to talk to”: accessing post-diagnostic dementia care before and since COVID-19 and associated inequalities.

International Journal for Equity in Health

Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers.

Journal of Geriatric Psychiatry and Neurology