New support for carers when making difficult decisions for people with dementia and COVID-19

September 3, 2020

With a possible second wave of Coronavirus on the horizon, researchers at University College London (UCL) have produced a decision-making guide for dementia carers so they can ensure their loved one gets the care, support and dignity they deserve if they catch COVID-19.

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 have observed the challenges to carers who can’t be with their loved one in person due to visiting restrictions and having to social distance or shield themselves. This often means that they have had to make quick decisions over the phone with a healthcare professional they have never met about the care and interventions their loved one receives.

Elderly couple on a sofa

The new guide which was developed with families of loved ones who have 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.

Dr. Karen Harrison Dening, Head of Research and Publications at Dementia UK, said:

“Ensuring that a person with dementia’s needs, rights and wishes for care are respected has always been challenging for families; overwhelming bureaucracy, a lack of understanding of dementia from key professionals and difficult decisions for families around end of life care prevail. The coronavirus has of course now compounded these issues, particularly given the high number of excess deaths we are seeing in dementia.

“Dementia UK’s specialist dementia nurses guide families through these challenges but any additional support that is provided to help them make decisions around a loved one, such as this guide, is invaluable.”

Paul Kelly, whose mum is living with dementia and caught Coronavirus in July said:

“Caring for Mum is really difficult. As a family we’ve just about managed to cope. I’m lucky because my wife Christine is a specialist nurse, with experience in elderly care so she has been able to explain and understand what’s going on. Without her insight we would have been completely lost.

“I do worry about those people who don’t have a qualified senior nurse in the family to advise them. Having a guide which breaks down how to care for a loved one with dementia will be a life-line for families like mine and will help to ease the pressure of the worrying situations carers find themselves in.”

Download the Decision Aid document here.

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