We must bridge the gaps for people living and dying with dementia in Scotland

by Richard Meade Head of Policy & Public Affairs, Scotland Richard Meade. Head of Policy and Public Affairs, Scotland

People who are terminally ill with dementia often find the care they need eludes them, resulting in a poor quality of life in their final years, months and days.

In contrast, the majority of people who are terminally ill with cancer are referred to palliative care services, which give them appropriate care at the end of their lives. Living and dying with dementia in Scotland: Barriers to care, a new report published by Marie Curie, highlights the challenges patients face in accessing the right care at the end of life. We know research suggests that only one in five people with dementia are identified for palliative care. Those who receive it typically do so only in the last few weeks of life. This is despite evidence which shows palliative care can make a significant difference to the quality of life for all people with a terminal illness and that they can benefit from this for many months and even years before their death. Although Scotland has made progress in developing dementia standards and strategies, we have yet to see any significant data to show how this is improving care for those at the end of life.

More progress is needed

We need greater progress to be made to ensure that those with dementia in the advanced stages are being identified for palliative care at the point at which it would benefit them. Many people with dementia are still being admitted unnecessarily to accident and emergency departments, which can impact negatively on their health. Thirty per cent of all hospital patients are in the last 12 months of life and well over 50% of people die in hospital, yet is unclear how many of these have dementia. As with most other conditions, the majority of people with dementia would like to die at home or their usual place of residence, such as a care home. Even without condition-specific data, we can see that this is very unlikely to be the case. This must be addressed. There has been clear progress in Scotland on the care of people with dementia. We now need to complete the picture and ensure they are getting the care they need at the end of their lives. So we are calling on the Scottish government to focus on end of life care in its third dementia strategy, which it is currently developing. We would also like to see this supported with better data that highlights the progress Scotland is making and identifies the gaps we still need to bridge in end of life care. Download Living and dying with dementia in Scotland: Barriers to care