COVID-19: End of life care and dementia
This brief guidance was developed by Alistair Burns, National Clinical Director for Dementia at NHS England/Improvement, and has been incorporated into NHS England publications.
The majority of people with dementia (which is the leading cause of death in England and Wales1) are aged over 70, have other long-term conditions and are frail, putting them into particularly vulnerable groups for developing complications if they are infected with COVID-19.
There are an estimated 675,000 people with dementia in England who are supported by a similar number of carers, most of whom are older people themselves. A quarter of people in acute hospitals and three quarters of residents of care homes have dementia.
The following points may be useful to clinicians and planners when considering end of life care matters in people with dementia:
- While two thirds of people with dementia have received a formal diagnosis, it is sometimes not always recorded accurately – it would be important to establish if a person has a diagnosis of dementia when discussing end of life care issues.
- Advance Care Planning (ACP) will help identify the wishes and preferences of people with dementia as described in My Future Wishes2 – check if the person with dementia has an ACP or a Health and Welfare Power of Attorney.
- COVID-19 can infect a person with dementia who is fit and well, as well as someone who may be frail and in the more advanced stage of dementia – conversations about end of life care should be tailored to reflect expectations in these two situations and palliative comfort measures offered.3
- When a person with dementia dies in a care home (six in ten people with dementia do), not being able to be with a loved one at the end of their life can be particularly distressing for families.
- If a person with dementia and COVID-19 is imminently dying and has symptoms such as breathlessness, or severe delirium,4 which are difficult to manage, specialist palliative care support and advice should be sought.
- There is often concern from clinicians over mental capacity of people with dementia, particularly as many will be in the severe stages of the illness where it may be impaired - there is ample guidance about assessing capacity and complying with legal guidance to act in the person’s best interests.5