Alzheimer’s Society responds to shameful inequality experienced by people dying with dementia

A new report highlights the shameful inequality between people dying with dementia and those dying without the condition.

This is according to the National Dementia Intelligence Network and National End of Life Care Intelligence Network briefing published by Public Health England (PHE) today (Thursday 29 September 2016).

Two thirds of the general population said they would prefer to die at home. This means with over 208,000 deaths with a mention of dementia recorded in 2012-14, approximately 140,000 people with dementia may have wanted to die at home but in reality, only 16,500 did.

Only 8% of people who die with dementia pass away 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. By comparison, a quarter (25%) of all deaths in the general population aged over 65 happen in a care home setting.

Services are currently not equipped to help people with dementia to die at home. Public Health England’s recommendations 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.

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”.