Impact on those with dementia

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New guidance has been developed as part of a major project to support people with dementia and family carers who are facing isolation and reduced services as a result of COVID-19.

A new leaflet features five simple tips, developed using the latest robust research and with the input of people affected by dementia. The leaflet is part-funded by the National Institute for Health Research (NIHR), in a project led by the University of Exeter and the NIHR Older People and Frailty Policy Research Unit, with partners including Alzheimer’s Society, Manchester University, Bradford University, Brunel University London and the NIHR Applied Research Collaboration South-West Peninsula (PenARC).

The leaflet is the first output of an ongoing project to support people living with dementia and their carers through the COVID-19 global health emergency.  The project recognises that people with dementia are particularly vulnerable to the psychological and social impacts of isolation and lockdown. The project takes into account the concerns expressed by people with dementia through partner networks such as Alzheimer’s Society, Innovations in Dementia and the DEEP network. They are describing concerns about maintaining supplies of food and medications, anxiety about what would happen if they were admitted to hospital, lack of confidence, feelings of loss and grief, increases in symptoms like agitation, and a more rapid decline in cognitive and functional ability.

For carers, lockdown means they are more captive in their role and lack respite opportunities. Many carers are finding it difficult to explain the current restrictions and enable the person with dementia to remain safe, and are deeply worried about the safety and well-being of their relatives.

Professor Linda Clare, of the University of Exeter Medical School, who led the project, said: “While not currently classed as “vulnerable” on health grounds, people with dementia and their family carers are disproportionately affected by social distancing, isolation and lockdown. Our research tells us that many people living with dementia and carers felt isolated and lonely before COVID-19, and now these feelings will be amplified. They can feel overwhelmed by the volume of generic advice and guidance available, and may be unsure how to select information that is relevant to them and their families and what information to trust.  This project aims to provide robust information, developed with the crucial input of people affected by dementia, to offer support through this crisis.”

The leaflet, available online here gives practical and self-help tips, as well as signposting sources of support, on five key points:

  • Staying safe and well
  • Staying connected
  • Keeping a sense of purpose
  • Staying active
  • Staying positive

The advice builds on University of Exeter-led research from the IDEAL programme which seeks to understand, and find ways to improve, the experience of living with dementia. Further information can be found here.

Further support is needed to aid the research into the impact of people living with dementia short and long term, and the COVID-19 virus.

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