Families need more help to make quick decisions about the care their dying older relatives with dementia should receive during COVID-19, say UCL researchers, with the support of Marie Curie and the Alzheimer’s Society.
Many older people with COVID-19 will have dementia which affects 22% of people aged 85 and over1. They may experience a sudden deterioration with rapid onset of respiratory failure. Given the high death rates from COVID-19 in older people, even in hospitals, it is hard for people with dementia and their families to know what the best thing is to do about treatment and care options.
For those who lack the ability to make decisions for themselves, it may also mean that families have to make very quick decisions under stressful circumstances, for instance about resuscitation. They will also have to weigh up the pros and cons of either sending their elderly relatives to hospital for medical attention or receiving palliative care at home, where they may be more comfortable, and families will be able to maintain contact with them.
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.
Researchers from the Marie Curie Palliative Care Research Department and Centre for Ageing Population Studies at UCL are producing an evidence-based guide, for family carers and people with dementia to use in the management of COVID-19. It is estimated that nearly half a million people with dementia in the UK live in their own homes2. Latest available data also shows that 38% of all COVID-19 deaths occur in people aged 85 and over (up to 24 April)3.
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.
Tracey Lancaster, whose mum is living with dementia said: “I’m dreading the call from the care home to say that mum has coronavirus. I worry about her fighting for breath and therefore we would have to decide if she goes into hospital or what care can be provided in the home. I’m not sure that I could make that decision. So, a decision guide like this one would be invaluable for me and my family.”
The rapid project, funded by an Economic and Social Research Council COVID grant and supported by end of life care charity Marie Curie and Alzheimer’s Society, will identify factors influencing place of care and death in older people as well as the key challenges and decisions which family carers of people living with dementia are facing currently in the COVID-19 pandemic.
The pandemic brings extra challenges to those who are ‘social distancing’ from their older relatives – and means that they may also need to make quick decisions over the phone with a professional they’ve never met.
Co-lead researcher Dr Nuriye Kupeli, Senior Research Fellow at Marie Curie Palliative Care Research Department, UCL Division of Psychiatry and an Alzheimer’s Society Fellow, said: “It is a difficult time for people living with dementia and their carers. Due to measures such as social distancing, self-isolation and shielding, people living with dementia and their carers may not have access to support and guidance when making difficult decisions. This work will help us to understand better how people living with dementia and their families are managing important decisions about care during COVID-19 and how best to support them.”
Co-lead researcher Dr Nathan Davies, Senior Research Fellow at Centre for Ageing Population Studies, UCL Institute Epidemiology and Health, and Alzheimer’s Society Fellow, said: “This is such an important project and follows on work we’re doing prior to COVID-19. Many families caring for someone living with dementia will be making daily decisions on behalf of their relative with dementia. But we know many will not have discussed or planned end of life care.
“The nature of COVID-19, which can worsen rapidly, means they will be forced to make quick decisions with potentially little support or information. They may be feeling overwhelmed considering what is best for their relative. The decisions they make may have a lasting impact on their grief and wellbeing: We want to try and help support carers with decisions to ease these feelings.”
The researchers say that having early and open conversations about end of life wishes with older relatives, particularly during COVID-19, could avoid potentially futile and burdensome interventions at the end of life while ensuring that loved ones get the compassionate care they need.
Marilyn Beattie, whose husband Gordon died in 2019, following a dementia diagnosis, said: “I felt like I was shooting in the dark most of the time. I didn’t know who to turn to, or what was available. It would have changed everything if I had an aid like this – a life-changer.”
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, when this isn’t possible, particularly during these uncertain times, it’s important that families 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.”
Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society said:
“Alzheimer’s Society are proud to unite with Marie Curie to support this urgently needed research. Covid-19 has severely affected people with dementia and their carers, and our Dementia Connect support line has been flooded with thousands of calls for help. This new, evidence-based guide will help carers and people living with dementia feel informed and supported, practically and emotionally, when making important decisions about care during the pandemic including hospitalisation, treatment and Do Not Attempt CPR.
“We know that the current crisis is making choices like these even more difficult which is why it’s so important Alzheimer’s Society researchers use their expertise to support people through this.”