COVID blog #8 – Supporting family carers of people living with dementia to make difficult decisions during COVID-19

Latest figures show that a quarter of deaths from COVID-19 in England and Wales were people living with dementia1. It is likely that family and friend carers of people living with dementia would have needed to make difficult decisions during this time. Due to governmental measures such as lockdowns, social distancing, self-isolation and shielding of those who are at higher risk of severe disease and mortality, carers are resorting to virtual forms of support when making difficult decisions. Support organisations such as Marie Curie, Alzheimer’s Society and Dementia UK have seen a substantial increase in the number of people seeking guidance from their telephone helplines and online communities.

If a person living with dementia becomes unwell during this time, family carers may need to make rapid decisions about how and where their relative would like to be cared for. These may include already difficult end of life care decisions. Shortage of health care professionals and measures to restrict movement and contact with those outside of one’s household mean family carers will not have access to support and guidance when making difficult care decisions.

We have worked with current and former carers and experts who support people living with dementia and their carers to develop a decision guide to help carers when making decisions during this difficult time. The guide covers a number of decisions carers may need to make if the person they are caring for has or is suspected to have COVID-19. These include decisions such as how to care for them if they are unable to visit them, whether they should go to hospital if they become unwell and what it means to have a do not attempt cardiopulmonary resuscitation order. The document will guide carers through the process of making these difficult decisions whilst taking into consideration wishes and preferences of the person living with dementia and the legal aspects of making decisions. We also provide useful tips for carers such as the COVID-19 symptoms to watch out for which may differ to the commonly recognised symptoms, where to find help and support when making decisions and how to look after yourself as a carer.

For more information the dEmeNtia and DEcision MakIng during Covid19 (ENDEMIC) please click here.

For the latest version of the decision aid, please click here.




Dr Nuriye Kupeli, Marie Curie Palliative Care Research Department, University College London, and Dr Nathan Davies, Centre for Ageing Population Studies, Primary Care and Population Health, UCL.



1 Office for National Statistics. 2020. Accessed 25th August 2020.