Guidance developed for dementia carers when dealing with Covid-19 infection

Dementia is the most common underlying condition in people who die with COVID-19 - a quarter of COVID-19 deaths have been people living with dementia*. People with dementia and COVID-19 often experience a sudden deterioration and respiratory failure, and the nature of dementia also means that many people with the disease lack the capacity to make their own care choices.

During the pandemic, researchers at Marie Curie Palliative Care Research Department at UCL, have observed the challenges to carers who can’t be with their loved one or person they support, due to visiting restrictions and having to social distance or shield themselves.

This often means that dementia carers have to make quick healthcare or legal decisions over the phone with a health professional: someone who may have no knowledge of the care and interventions the person with dementia requires.

Co-lead researcher Dr Nuriye Kupeli, Senior Research Fellow at Marie Curie Palliative Care Research Department at UCL said: “As the pandemic evolves, this brings new challenges for people living with dementia and their carers.

“Through this work we have found that family carers are having to make difficult decisions on a daily basis. These vary from knowing whether to visit the person they are caring for to deciding where would be the most appropriate place of care.

“Online communities and helplines provided by Marie Curie, Dementia UK and Alzheimer’s Society have become an important source of information and support for family carers. Our decision guide will help family carers to feel prepared and have a sense of control when making difficult decisions.”

The new guide, which was developed with families of those with dementia, is funded by an Economic and Social Research Council COVID-19 grant and supported by end of life care charity Marie Curie, Alzheimer’s Society and Dementia UK.

It is a free downloadable document that helps carers work through situations, medical and legal jargon so they can make informed decisions quickly under stressful circumstances.

This includes do not resuscitate orders, legal issues like power of attorney, and ensuring that health and social care professionals understand what is important to the person they are caring for when that patient’s loved ones can’t be by their side.

The research team hopes that the new guide will also ease the emotional burden that families can experience and help resolve any feelings of uncertainty about the decisions they have made for their loved ones.

Co-lead researcher Dr Nathan Davies, Senior Research Fellow at Centre for Ageing Population Studies at UCL said: “We know that many family carers find it stressful when making decisions, particularly about end of life care, which is why we worked with carers and experts to develop this guide.

“A large number of people with dementia reside in care homes and due to restrictions to visiting, carers may have to make decisions without being able to see the person they are caring for. Our document will guide carers through the process of making these difficult decisions whilst taking into consideration wishes and preferences of the person living with dementia and the legal aspects of making decisions. This includes 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.

“We also provide useful tips for carers such as the COVID-19 symptoms to watch out for which may differ to the commonly recognised symptoms and where to find help and support when making decisions. With the second peak of the pandemic potentially looming, we hope that family carers will find our decision guide a useful resource when making these emotive and difficult decisions.”

Matthew Reed, Chief Executive of Marie Curie said: “Our bereavement services have seen an influx of people who are experiencing post-traumatic stress as a result of complicated grief throughout the pandemic. It’s vital that families of those living with dementia are properly supported to make difficult decisions and are not left with a legacy of grief and guilt because they’re not sure they made the right choice in a moment of crisis.”

*ONS data: A quarter of COVID-19 deaths have been people living with dementia

Links

• Dr Nuriye Kupeli’s academic profile
• Dr Nathan Davies’s academic profile
• UCL Division of Psychiatry
• UCL Department of Primary Care & Population Health
• UCL Institute of Epidemiology & Health
• UCL Faculty of Brain Sciences
• UCL Faculty of Population Health Sciences
• Alzheimer’s Society
• Marie Curie

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