Marie Curie calls for new focus on care for people dying of dementia

In Scotland not enough people with dementia are getting palliative care at the end of their life and those that do, receive it much later than they should. As well as adding strain to health services, this causes emotional distress for patients and their families.

The findings are highlighted in a new report published today (3 February 2015) by Marie Curie, Living and Dying with Dementia in Scotland: Barriers to Care. The report also emphasises that patients with dementia have less access to care and there is an uncertain picture compared to other terminal illnesses.

Among the causes identified the report highlights that some health care professionals fail to recognise dementia as a terminal illness. In a recent Scottish study, just 20% of those with possible dementia are identified as requiring palliative care compared to 75% of those with cancer.[i] With many patients confusion and memory loss are dismissed as normal signs of ageing leading to inadequate care.

With an estimated 88,000 people in Scotland with dementia, a total expected to double by 2031, Marie Curie is urging action and is calling on the Scottish Government to:    

• Ensure that regardless of diagnosis people who might benefit from palliative care are accessing it.
• Focus on collecting robust data in order to ensure that there is a clear national picture of the level and quality of care being received by those with dementia and at the end of their life.
• Make end of life care a core part of its future national dementia strategy to ensure it is being offered to patients. 

Richard Meade, Head of Policy and Public Affairs, Scotland said:

“Many people with dementia who are coming to the end of their lives do not get the care that they need. People dying with dementia have very specific and different needs to those with other conditions, such as cancer.

“The Scottish Government and its partners have made important progress with the first two dementia strategies, but there remain a number of barriers that are preventing patients from getting the support that they need. Ensuring that all people at the end of life that need palliative care get it, regardless of their diagnosis, must be a priority.

“Unfortunately we cannot see a clear picture of what end of life care looks like for someone with dementia as there is no readily available national or local data. We urge the Scottish Government to collect and publish robust data to monitor and improve care.”

The full report will be live at www.mariecurie.org.uk/policy/publications.