Dementia patients did not get vital end of life care during the pandemic as many family carers were reluctant to seek support because of fear of what may happen to their relative, according to new research.

In some cases, a lack of trust with the government developed, and instead carers sought support from alternative services such as nationally known charities. Many said that the ‘frequently changed’ and ‘often unclear’ guidelines did not seem to consider the needs of those living with dementia and their carers.

Other fears included hospitalisation and becoming ill with Covid-19, care home placement, or not being able to be with a relative at the end of life.

The charity, Marie Curie, fears this left people dying at home without the vital support they needed and is calling on the government to make it compulsory to commission end of life care services in England, adding that the increased numbers of people dying at home during the pandemic will become the norm as the country’s population ages.

Carers worried about being additional burden to the NHS 

Academics at University College London conducted a qualitative study using semi-structured interviews with eight telephone support line staff from Dementia UK’s national helpline and staff at Marie Curie’s support line. 

Interviews were conducted in the first wave of the pandemic in England in May–June 2020 and revealed dementia carers were worried their loved one would die alone if they had to go to a care home and would be an additional burden to the NHS during the first lockdown.

Carers said they believed normal NHS services weren’t available and were concerned about adding to NHS pressures if they tried to access support. Many were left on their own to make important decisions about end of life care amidst a crisis with limited support.

Some even mentioned a fear of being arrested if they were caught visiting a relative with dementia

Dr Nuriye Kupeli, from the Marie Curie Palliative Care Research Department at University College London, said: “It’s heart breaking to hear about the challenges family carers of people living with dementia faced during the pandemic. We know that between March and June 2020, dementia was the main underlying condition for a quarter of all Covid-19 deaths.

"Tragically, it appears that many of these people did not receive the support they needed. No families should be left to provide care unsupported. Guidance and advice should always be accessible for people caring and making decisions for a relative living with dementia. More must be done to reach out to people with dementia, and those caring for them, especially at times of uncertainty, to let them know they are not alone.”

Palliative care services should be commissioned in every part of England

The research, identified four other key themes that people with dementia and their carers experienced: concerns about care transitions (transferring people to hospital/care home); uncertainty in engaging support and help (from health and social care professionals); pandemic motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. All these factors meant that many carers were left to provide care at home, unsupported.

Dr Sam Royston, Director of Policy and Research at Marie Curie added:  It is imperative that the health and care system works for people with terminal illnesses, including dementia, so families are supported to have the best possible experience at the end of life. This must include better resourcing of community based health and social care services.

“The pandemic has been a test for palliative care and the current model is not sustainable for the ageing population. By 2040, 100,000 more people a year will die. There needs to be a clear plan for people with terminal illnesses, both now and in the future, so they can get the care they need. People cannot be left unsupported. We are urging the Government to revise the Health and Care Bill to ensure palliative and end of life care services are commissioned in every part of England to stop people, like those in this research, from missing out.”

This research, published in BMC Health Services Research, was supported by Dementia UK, Alzheimer’s Society and Marie Curie and was funded by the Economic and Social Research Council, as part of UK Research and Innovation’s response to Covid-19.