New report explores dying with dementia and makes recommendations for improving end of life care

Categories: Research.

The new report, produced by the Dementia Intelligence Network and the National End of Life Care Intelligence Network, explores changes in dementia deaths over time, who the people dying with dementia are, where they die and the cause of their death.

The report highlights how the proportion of people dying with a recorded dementia diagnosis has more than doubled since 2001 – most likely due to an increase in awareness and recording of dementia.

In 2014, there were 73,189 deaths with a recorded mention of dementia. Nearly all of these deaths occurred in people aged 65 and over, representing 18% of all deaths in this age group.

More than a third of deaths with a recorded mention of dementia also had a recorded mention of respiratory disease (38%) or circulatory disease (36%). Comorbidities have additional implications for people with dementia, with the loss of cognitive function impacting on the capability for self-management of other conditions.

The report also highlights differences in end of life care between those who die with dementia and those who don’t.

For example, over the period studied (2012-2014) only 8% of people who died with dementia did so at home, compared to 21% of the general population aged 65+.

The majority (58%) of deaths of people with dementia over the age of 65 occurred in a care home – in the general, 25% of deaths of those aged 65 and over happen in a care home setting. A very small proportion died in hospices (1%) compared with the general population (5%).

In order to tackle these inequalities, recommendations from Public Health England include focusing on dementia-specific palliative services, improving the adoption and quality of advanced care planning, and advocating GP-led holistic reviews for more co-ordinated care.

Need to improve the access to person-centred palliative care for everyone

Commenting on the findings, Jonathan Ellis, director of policy and advocacy at Hospice UK, said: “Understanding where and how we die is vital to understanding how we can improve end of life care in the UK. The findings from the Dementia Intelligence Network clearly show that there is much to be done to make sure services are accessible to people with dementia, and recognise their needs and preferences.

“Hospices are already working with care homes, the NHS and other providers to share expertise and get the right care to people where they feel most comfortable. Since 2015, Hospice UK and Dementia UK have also been facilitating a dementia end of life care ‘Community of Practice’. This brings together people from the hospice sector and other settings, keen to build their skills and provide high quality palliative and end of life care for people and their families affected by dementia.

“We need to work much harder as a society to improve the access to person-centred palliative care for everyone, regardless of medical condition, geography and personal circumstance. Hospices are already reaching out to play their part in making this a reality.”

Martina Kane, senior policy officer at Alzheimer’s Society, said: “Dementia is still being overlooked as a terminal illness. Consequently, we continue to see the sustained failure to prepare and plan for end of life care for people with the condition. Everyone has the right to a dignified death in a place of their choosing, yet this report shows people with dementia are shamefully being treated as second class citizens.

“One tenth of all recorded deaths are due to dementia, and it’s heart-breaking that so many people with the condition are spending their final days in unfamiliar surroundings. Some are not dying where they had hoped; others are dying in pain, or without dignity.

“More advanced care planning is needed, a greater understanding of people’s wishes towards the end of life, and a push to provide more services in the community, allowing people remain where they want to be, at home, when possible.”

The data analysis report and briefing are available to download from the National Mental Health, Dementia and Neurology Intelligence Network (NMHDNIN) website, along with datasets for each local authority and clinical commissioning group.