Dementia is a terminal illness and nearly 5,000 people every year die from it in Scotland.
However, not enough people with dementia at the end of life are getting the care that they need, an issue to be discussed at the Scottish Parliament’s Cross-party group on dementia this week.
Living and Dying Well with Dementia in Scotland, our report published earlier this year, discussed a number of barriers faced by people with dementia at the end of life of their life.
The final stage of dementia is comparable with other terminal illnesses as the prognosis is often similar and it’s clear that palliative care would be of benefit.
Holistic care including pain and symptom management, as well as emotional and spiritual needs support people living with a terminal illness over the last years and months of life. Only two in ten patients who died of dementia received palliative care and those that did only received it in the last few weeks of life.
Many health practitioners do not recognise dementia as a terminal illness.
Often it is not listed as the cause of death on the death certificate with other conditions recorded, such as pneumonia or senility.
It is likely that there are many more than 5,000 people who die of dementia each year, but this is not being captured. There are currently 88,000 people living with dementia in Scotland and this expected to double in the next 15 years.
Many dementia patients would like to receive their care at home, but are more likely to die in hospital. Dementia patients are also more likely to be admitted inappropriately to accident and emergency, and there is evidence of a lack of advanced care planning. More needs to be done to tackle these challenges.
The Scottish Government has published two national strategies for dementia and we would like to see end of life care a focus of their upcoming third national strategy.
Progress must also be measured against the Standards of Care for Dementia in Scotland. Ensuring that all people at the end of life that need palliative care get it, regardless of their diagnosis, must be a priority.
• Richard Meade is Marie Curie’s head of policy and public affairs, Scotland