During the Scottish General Election campaign, Alzheimer Scotland will be asking our members and supporters to contact their candidates to sign a pledge to deliver Fair Dementia Care for people with advanced dementia. 

In 2019 we published “Delivering Fair Dementia Care for People with Advanced Dementia” and launched our Fair Dementia Care campaign. This campaign seeks to end the inequality faced by people living with advanced dementia. To date over 18,000 people in Scotland have supported the campaign, as have members of the Scottish Parliament from across all political parties in debates in 2019 and 2020. 

Dementia is caused by progressive and terminal neurological diseases such as Alzheimer’s disease. In advanced dementia, people experience complex physical and psychological symptoms which require specialist health and nursing care needs. People with advanced dementia living in Scotland’s care homes do not have equality of access to the health care they need. Between 70% - 90% of people living in Scotland’s care homes are people with dementia. We estimate that 35% of those are living with advanced dementia and because social care is not free, they are disproportionately impacted by social care charges. Fair Dementia Care is about ensuring that those with advanced dementia receive free health and nursing care on a par with those with other progressive and terminal illness. 

The COVID-19 pandemic has further demonstrated the inequity experienced by people living with advanced dementia in Scotland’s care homes. Tragically, many have died during this pandemic and many thousands more have not had the comfort of seeing, or receiving care from, their families and friends as a consequence of the public health restrictions. There is irrefutable evidence of the direct and indirect harm of COVID-19, including evidence of substantial decline in their physical and mental health and an acceleration of the symptoms of dementia. People with advanced dementia continue to face care home charges for what are clearly health and nursing care needs. 

Alzheimer Scotland is calling on candidates from all political parties to end this inequity and pledge to deliver Fair Dementia Care for people with advanced dementia by committing to:   

  • Ensuring that every person with advanced dementia, living in a care home, has an individual assessment of their health and nursing care needs.   

  • Support an increase in free personal and nursing care payments to a level which is equal to the actual cost of the care people with advanced dementia need.   

The recently published Independent Review of Adult Social Care in Scotland makes recommendations which, if implemented, will end non-residential social care charges for all. It also proposes a substantial increase in Free Personal and Nursing Care payments based on the national care home contract. We welcome those proposals. However, people living with advanced dementia today do not have time to wait several years for the type of transformation set out in the Independent Review to be implemented. Nor do we believe that the Report’s proposed increases in Free Personal and Nursing Care payments go far enough. While this is a substantial step in the right direction, we want to see every person with advanced dementia have an individual assessment of their health and nursing care needs and a corresponding increase in Free Personal and Nursing Care payments which reflects the actual cost of providing that care. Only then will people with advanced dementia be treated equally with those who have other progressive and terminal illnesses. 

This is why we are asking all political parties across Scotland to support the pledge.