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)

Gareth John O'Rourke, Claire Pentecost, Eleanor van den Heuvel, Christina Victor, Catherine Quinn, Alexandra Hillman, Rachael Litherland, Linda Clare

Research output: Book/ReportOther report


We interviewed people with dementia and carers from the IDEAL cohort to find out how the COVID-19 lockdown and continuing restrictions affected those living with dementia. 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.

What might be helpful for people with dementia?
• Reablement to help regain or maintain skills
• Personalised health advice regarding managing COVID-19 risk and the opportunity to ask questions.
• Identification of people with dementia who live alone and an assessment of their needs.

What might be helpful for carers?
• Needs assessment in regard to respite.
• Novel forms of respite care that incorporate social distancing.

What might be helpful for both carers and people with dementia?
• Access to COVID-safe outdoor spaces.
• Continuation and expansion of ‘just checking’ services.
• Support to get online and use the internet.
• Communication and information through non-digital means.
• Community COVID-19 ‘dementia awareness’ initiatives.

What might be helpful for people from Black and minority ethnic groups?
• Addressing concerns about their increased risk of COVID-19.
• Directing information and support through existing community and faith groups.
Original languageEnglish
Commissioning bodyNational Institute for Health Research
Number of pages45
Publication statusPublished - 28 Feb 2021

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