Delivering Fair Dementia Care

This blog was written by Beau Nieuwenhuijs in response to the Alzheimer Scotland “Delivering Fair Dementia Care” report which can be read in full here.

Alzheimer Scotland recently published their “Delivering Fair Dementia Care for People with Dementia” report. This report set out to determine how advanced dementia is defined and recognised in practice; how many people currently live with advanced dementia; what the costs and charges framework for dementia care looked like; and make recommendations to ensure people will receive fair dementia care from diagnosis to end of life. Their research found that advanced dementia is caused by progressive, neurological disease processes and requires complex health and nursing care. Despite this, people with advanced dementia don’t have equal access to the health care provisions their condition requires. Instead, their needs are attempted to be met through social care. This means people with advanced dementia and their carers are met with social care charges rather than receiving their medical and nursing care free at the point of use. On top of that, the system of social care charges is found to be not transparent and inconsistent across the 32 Local Authorities.

It is quite clear that the current state is unfair and unequal for the person with advanced dementia as well as their carers, who will be equally affected by this. Tide is therefore grateful for the work that Alzheimer Scotland and the Fair Dementia Care commission have undertaken to bring these issues to light. We were also pleased to see the Member’s Debate brought to the Scottish Parliament by Richard Lyle MSP. Any chance to discuss the state of dementia is much needed. Even though Scotland has world leading dementia policy, it is clear that the gap between the policy aspirations and the reality many carers and people with dementia face on a daily basis is substantial. Luckily, there is a lot of excellent, innovative work being delivered in localities by organisations such as Alzheimer Scotland and Age Scotland, and the many independent groups and initiatives funded through the Life Changes Trust. However, through our work we still see that carers are having to bear the burden of this gap and are delivering above and beyond what can reasonably be expected of unpaid partners, relatives and friends. We believe this shouldn’t happen in a country that has seen three world leading dementia strategies; progressive legislation such as Frank’s Law; and as much rights-based engagement of carers and people with dementia through NDCAN, tide, SDWG and DEEP as Scotland has.

We therefore support this report and join Alzheimer Scotland in their recommendations to the Scottish Government, COSLA and Integrated Joint Boards. It is of the utmost importance that people with advanced dementia are having their health and nursing care needs met through the appropriate frameworks rather than through social care with associated charges. It is crucial that there is more clarity and transparency on social care charges and a consistency across the 32 Local Authorities. The current status quo is unfair as well as unsustainable. If people are having to contribute £50.9 million to social care charges as the report estimates the consequences will be detrimental to the carers as well as the person with dementia. It will undoubtedly contribute to the worry and stress carers experience and will affect their life significantly both when the person with dementia is still alive and after they have died. The inequality the Fair Dementia Care report describes will have long lasting and significant effects on carers and people with dementia and this needs to be addressed as soon as possible if Scotland wants to remain world leading in the field of dementia.