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

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With the 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.

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.

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.”

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.”

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:

“At Marie Curie, we understand the value of planning ahead for the death of a loved one, however, the pandemic has forced us to confront death in ways we never could have comprehended.

“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.  

“Having to make these difficult decisions can have a profound impact on the emotional well-being of family members, and lasting feelings of guilt and doubt if they made the right decision.” 

Colin Capper, Head of Research Development and Evaluation at Alzheimer’s Society said:

“The coronavirus pandemic has changed life for us all, but particularly for people with dementia and their families who have been worst hit. Our Alzheimer’s Society support line has been flooded with calls from people worried about the life-changing decisions they’re having to make for a loved one with dementia, especially when they’re not able to see them. With a second wave of coronavirus looming on the horizon, the new guidance developed in partnership with Alzheimer’s Society will be critical in providing practical support and advice that families need – so essential when making emotional, tough decisions about where and how their loved ones will get the best care.  

“Sadly, the pandemic has hit dementia research funding hard, putting work like this at risk. We need the government to honour their pledge to double dementia research funding, so that we prioritise good dementia care as the pandemic evolves to ensure families do not have to face this crisis alone.”

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.”

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