Report: Delivering Fair Dementia Care For People With Advanced Dementia (Scotland)

Former First Minister Henry McLeish has unveiled a major new report to urgently address the inequalities that people living with advanced dementia face every day under the current social care model.

The Fair Dementia Care Commission was established by Alzheimer Scotland to consider the inequality in access to health care and the disproportionate impact of social care charges faced by people with advanced dementia, their families, and carers in Scotland. Chaired by Henry McLeish, the commission brings together a small group of experts to work in partnership with Alzheimer Scotland to make a series of bold recommendations to end these inequalities.

The report highlights that the complex needs associated with advanced dementia have not been fully understood or recognised as health or nursing care and therefore free at the point of delivery.

The report calls for authorities to accept and recognise that people with advanced dementia must have the equality of access to free health care on a par with people who are living with other progressive and terminal illnesses. The report also highlights the current complexity, variability and lack of transparency in social care charging policies across Scotland.

Chair of The Fair Dementia Care Commission, Henry McLeish, said: “As we discover more about dementia and develop a better understanding of the disease processes which cause dementia, it is crucial that we reflect on how we respond to the needs of people living with what is a progressive terminal illness.  

“We must work towards ensuring that people living and dying with advanced dementia can have equity of access to the health care they need on an equal basis to those who have other progressive terminal illnesses, and which is free at the point of delivery.

“On behalf of Alzheimer Scotland and the members of this commission I ask that Scottish Government accept and act on the recommendations set out in this report so that we can work towards delivering fair dementia care for people with advanced dementia.”

The report urges an urgent rethink in the way that Scotland delivers care and treatment for people with advanced dementia. The recommendations as set out in The Fair Dementia Care Commission report, Fair Dementia Care for People with Advanced Dementia, include:

• Commission’s definition of advanced dementia is used and implemented in practice.
• Advanced dementia is fully recognised for the complexities involved in the care needed as it progresses to end of life.
• Scottish Government commits to recognising that the needs of people with advanced dementia are health care needs and ensure equality of access to appropriate health and nursing care, which is free at the point of delivery
• The Scottish Government commits to investigating the costs of implementing appropriate and free health care for those living, and dying, with advanced dementia
• The Scottish Government, COSLA and Integration Joint Boards commit to ending the current lack of transparency, complexity and variability in current non-residential care charging provisions across Scotland
• The recording of dementia (including advanced dementia) prevalence across all health and social care settings is urgently required to support better understanding of demand, allocation of resources and improved care and support
• All local authorities/health and social care partnerships make local charging policies accessible and readily available

Henry Simmons, Chief Executive of Alzheimer Scotland, commented: “Within our current policy and practice construct there is no evident understanding of advanced dementia. The changing nature of individual needs do not appear to have been properly understood and it would seem very clear that once diagnosed with dementia, people are boxed into an ongoing social care construct which they subsequently pay for on an ongoing basis.

“The findings of this report provide us with a detailed understanding of the inequalities that exist for people with advanced dementia who are living with complex health care needs. Whilst we understand that it will require significant effort and dedication to fully transform our system, we ask that the Scottish Government lead the way by accepting the definitions and recommendations in this report and commit to starting the journey towards delivering fair dementia care for those with advanced dementia in Scotland.”

With over 90,000 people living with dementia in Scotland, and a rising numbers of people receiving a diagnosis, this is the biggest public health priority. There is currently no effective treatment and no cure. Dementia is the second leading cause of death in Scotland; accounting for 11.3% of all deaths and is the leading cause of death among women.

The impact of dementia on individuals, their carers and families living with the illness has profound physical, psychological, emotional and financial implications that must be addressed to help transform Scotland’s dementia care and support. The Scottish Government must now address the credibility of asking people with advanced dementia living in the community to pay for their own care when those needs are clearly healthcare needs.

Click here to read to full Fair Dementia Care Commission report.