Helping carers make decisions for loved ones with dementia
A decision aid toolkit provided a vital lifeline to carers during the COVID pandemic
In March 2020, the UK government took the unprecedented step of ordering people to stay at home to limit the spread of COVID-19. The pandemic and ensuing lockdowns took their toll on all of us but were especially stressful for people caring for someone living with dementia.
“Soon after the pandemic began, we learned that over a quarter of COVID-19 deaths were occurring in people living with dementia,” says Dr Nuriye Kupeli, Senior Research Associate at the Marie Curie Palliative Care Research Department at University College London (UCL).
“Imagine being a family carer at this time and hearing all over the news how badly COVID was affecting this population.”
The pressure on carers was compounded by the closure of, and changes to, local services that would normally have served as a vital support line. In April 2020, Carers UK, a charity representing Britain’s carers, found that 70% of its members had increased their caring duties. By October 2020 this number had increased to 81%.
Carers were often faced with difficult decisions to make alone, particularly about what to do when the person living with dementia needed end of life care.
“Care homes had to close their doors and they weren’t allowing families to visit,” says Dr Kupeli. “Family members were having to make a lot of difficult decisions at the end of a phone call without being able to see the person they were caring for, and as services had to adapt to new ways of working, families were unable to discuss their worries with healthcare professionals they would normally see. It was a really distressing time for families.”
Dr Kupeli’s colleague at UCL Narin Aker, agrees: “We know families have to make difficult decisions when caring for someone living with dementia, but the pandemic resulted in another layer of complexity as families were having to make decisions, such as whether to complete Do Not Attempt Resuscitation orders, with minimal support and guidance.”
Dr Kupeli and her colleague at UCL Dr Nathan Davies produced a decision-making toolkit to support carers in making vital decisions about care for their loved ones.
“Our goal was to explore the challenges of the COVID-19 pandemic for family carers of people living with dementia, in order to develop a decision aid to support them,” says Narin Aker, who served as the main researcher on the project.
“We interviewed charity helpline staff at dementia and palliative care charities to understand the immediate challenges and the decisions families were having to make.”
The tough decisions facing carers
The research revealed that the most common concern expressed by family carers throughout the pandemic was what to do if their loved one needed end of life care.
Many were unsure about whether to place their loved one in a care home, admit them to hospital, or keep them at home. Carers were worried that if they placed their loved one in a home, they would no longer be able to visit them, and that their condition would deteriorate in their absence. There was also the very real fear that there could be a COVID-19 outbreak in the care home.
“A lot of people were also very reluctant to see their loved ones go into hospital, because they knew once they were admitted, they may not be able to see them for some time,” says Dr Kupeli.
Carers also believed normal NHS services weren’t available and were concerned about adding to NHS pressures if they tried to access support. Some carers even mentioned a fear of being arrested if they were caught visiting a relative with dementia.
Decision aid offered a lifeline
The researchers designed the decision aid toolkit to help with these dilemmas. It covers some of the common challenges and decisions facing carers, such as what to do if a person with dementia becomes unwell with coronavirus, or if their symptoms of dementia worsen and they need end of life care.
For each dilemma the guide gives carers information about their options and how to make a decision. It includes advice on decisions such as how to care for their friend/relative 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’.
The document guides carers through the process of making these difficult decisions whilst taking into consideration the wishes and preferences of the person living with dementia, and the legal aspects of making decisions. It also provides useful tips for carers such as the COVID-19 symptoms to watch out for, where to find help and support when making decisions, and how to look after themselves.
The decision aid has been used by clinical teams in hospitals, and carers. NHS England have included it in their COVID-19 dementia care pathway and it has been recommended as a resource for healthcare professionals and carers in the NHS Guide to Dementia Wellbeing in the Pandemic.
“Decision making can be fraught at the best of times, especially if the person with dementia has not indicated their wishes and preferences at a time when they have capacity to do so. Due to the rapid nature of the effects of the virus, decision making about care and treatment became even more challenging,” says Dr Karen Harrison Dening, Head of Research & Publications at Dementia UK.
“The researchers at University College London recognised that as people with dementia approach the end of life, they develop symptoms which can be distressing and create dilemmas in decision making for both practitioners and family members.
“They responded quickly in the early stages of the pandemic by developing a decision aid to support carers when making decisions, should their loved one become unwell. The guide is very welcome and presents a very useful resource for health and social care practitioners as well as for family carers and supporters.”
Natalie Pettitt is a carer for her mother-in-law who has vascular dementia. She believes the decision aid would have been a very useful tool for carers during the pandemic but will also help carers in the future too.
“When my mother-in-law became unwell, and we noticed that she could no longer live on her own, we had to make the difficult decision to move her into a care home,” says Mrs Pettitt.
“We had to do this in the middle of the pandemic when care homes were not allowing families to see their loved ones. My mother-in-law was also admitted to hospital during the pandemic, and we were unable to see or visit her. This was a very distressing time for us as a family and we had to make difficult decisions about her care with limited information and support.
“A resource like this decision aid would have helped us to know where to go to for support and the questions to ask. It is also helpful now for carers like me to prepare us for when we might have to make difficult decisions in the future.”
Want to know more
If you’re a UK taxpayer, your contributions helped fund this work via the Economic and Social Research Council and UK Research and Innovation — the UK’s largest public funder of research. You can read more about what we do here. This project was also supported by Dementia UK, Alzheimer’s Society and Marie Curie.
ESRC funds world-leading research in the economic, behavioural, social and data sciences to understand people and the world around us. This work helps raise productivity, address climate change, improve public services and generate a prosperous, inclusive, healthy, and secure society.
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