End-of-life care demand for dementia patients set to surge, study warns

The number of people living with dementia who require end-of-life care is set to “substantially increase” in the coming years, according to a study.

Researchers project anywhere between 399,000 to 676,000 patients will need palliative care by 2040, which is “far greater than previous estimates based on mortality data”.

They urged the Government to “act now” and prioritise investment in health and social care systems and workforce to meet demand.

The Empowering Better End of Life Dementia Care (EMBED-Care) programme, jointly led by University College London and King’s College London, created the projections based on a study that used data from the English Longitudinal Study of Ageing (ELSA) to estimate how many people could be living with dementia by 2040.

The most conservative estimate, based on dementia rates increasing by 2.7% annually, could mean 399,000 patients requiring palliative care by 2040, up from 274,000 in 2018.

A 2.8% increase could mean 676,000 patients will need end-of-life care in 16 years, academics suggest.

Researchers said: “Previous projections of the number of people with dementia who will have palliative care needs in England and Wales were based only on the number of people who died with dementia, and did not take into account people living with dementia.

“Thus, it is likely that the prevalence of palliative care needs among people with dementia in England and Wales has been considerably underestimated.

“Our analysis shows that even if dementia incidence declines between 2018 and 2040, the number of people living with dementia in England and Wales who have palliative care needs will increase substantially by 2040, reaching levels far greater than previous estimates based on mortality data.”

The study, published in Palliative Medicine, follows the publication of a independent NHS review by Lord Darzi last week.

Among his findings were warnings that too much of the NHS budget is being spent in hospitals with too little in the community, with more people living longer in ill-health and struggling to see their family doctor.

Emel Yorganci, lead author and research associate at King’s College London, said: “The current health and social care systems, especially the primary and community care services as highlighted by the Darzi review, are not equipped to provide high-quality care and support to the increasing number of people with dementia and their families.

“The Government must act now and prioritise investing in building health and social care systems and a workforce equipped to deliver palliative care to people affected by dementia in and out of hospitals.”

A Department of Health and Social Care spokesperson said: “This government wants a society where every person, including those with dementia, receives high-quality, compassionate care from diagnosis through to the end of life.

“We are determined to shift more healthcare out of hospitals and into the community, to ensure patients and their families can access the personalised care they need, where and when they need it.”

Dr Paul Perkins, chief medical director at palliative and bereavement support charity Sue Ryder, added: “Many people will be surprised to learn that dementia is a terminal illness and that people with dementia could benefit from palliative care. And because this isn’t commonly understood, many people with dementia are often referred to palliative care later than they should be and sometimes not at all.

“This research emphasises the need to grow awareness that dementia can lead to someone’s death but also how a timely referral to palliative care can help people with dementia to live well for as long as possible. Much of the specialist palliative care in the country is provided by hospices and paid for through their charity shops.

“The Government must look at more sustainable ways of funding these essential care providers, otherwise, this rise in demand could shift more pressure on to the NHS.”