A new Research Letter, published in Palliative Medicine, estimates that the palliative care needs of people living with dementia in England and Wales will be much higher by 2040 than previous projections have indicated.
People with dementia can have severe symptoms and complex care needs throughout their illness, not just before death, which can benefit from palliative care. Specialist palliative care can also help with reducing the number of emergency department attendances and unplanned hospital admissions experienced by people with dementia.
The research was carried out as part of the Empowering Better End of Life Dementia Care (EMBED-Care) programme, which is jointly led by researchers at University College London and King’s College London, and aims to improve care for people living and dying with dementia.
Using recently updated data on the number of people with dementia in England and Wales from Chen at al., 2023, the Research Letter found that the number of people with dementia in England and Wales who have palliative care needs is projected to substantially increase by 2040, from 274,000 to 399,000 using the most conservative scenario in which incidence of dementia declines over the next 20 years. This number could be as high as 676,000 under a scenario where incidence of dementia increases over the next 20 years.
Most palliative care for people with dementia is provided by generalist health and care professionals, including GPs, community nurses and care home staff.
This new data indicates that the capacity for generalist and specialist palliative care for people with dementia needs to increase substantially in order to meet projected needs. The NHS will have to increase its palliative care provision in order to keep up with future demands.
These new projections are triple previous estimates of palliative care needs among people with dementia, which were based on mortality data, i.e. the number of people who had died with dementia, rather than the data on people living with dementia. Projections of palliative care need based on mortality data showed that this number would be 131,645 by 2040 in England and Wales.
The new study finds that even if dementia incidence declines between 2018 and 2040, the number of people living with dementia who have palliative care needs will increase substantially.
Emel Yorganci, lead author and Research Associate at King's College London, said: "Our projections show that the number of people living with dementia who have palliative care needs will substantially increase each year; much more than our previous predictions.
"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."
