​The complex needs associated with advanced dementia have not been fully understood or recognised, experts have said

Misunderstandings around advanced dementia are leading to terminally ill patients paying for their care, a report has claimed.

Former First Minister Henry McLeish unveiled a new report this week 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 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 Fair Dementia Care for People with Advanced Dementiareport 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.

It 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.

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.

Henry Simmons, chief executive of Alzheimer Scotland, said: “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.”

Health Secretary Jeane Freeman said: "We welcome this report and we will carefully consider its findings. We will continue to work with Alzheimer Scotland and others as we take forward our policy and programmes across health and social care.

"We are committed to delivering person-centred care for everyone in Scotland, extending free personal care to everyone who needs it from April 2019 and increasing investment in social care and integration to more than £700 million in 2019/20."