Covid blog #11 vaccination: what to do with people with dementia in nursing homes?

Now the first vaccinations are up for approval, countries are starting to roll this out with the United Kingdom as the first (  and probably Canada the second, while others are thinking about their vaccination strategy. Three people from the Expertisecentre Dementia in Belgium, including Interdem member Jan Steyaert, already looked forward to what this means for people with dementia in nursing homes and published an article on December 11th ( Because it is written in Dutch, I thought it would be worth to summarize and share with a broader community through this website.

Which questions and dilemmas are rising when thinking about vaccination of people with dementia in nursing homes? This touches on ethical issues and public health issues and a real life (but anonymous) discussion of three family members, children who have a father with dementia in a nursing home makes it clear, especially as the father is incapable to express his view. The main disadvantage is the uncertainty about the impact of the vaccination in the long run. However, with the age of their father they do not think this is a big issue. On the other hand, a smaller change to develop Covid-19 with restrictions in visiting him seems to have more impact. After discussing this, the children decide that the advantages prefer above the disadvantages.

Vaccination in Belgium is not mandatory, except for infantile paralysis/polio. The authors do not advocate to change that for Covid-19. They see that the standard vaccinations in Belgium are well accepted, for instance 95% of children take them for measles. Flu vaccination in nursing homes is also well taken.

For persons with dementia, loss of capability plays an important role and the use of advance directives that are made at a stage that people can still express their preferences is highly recommended. But even in case of incapability it is important to involve the person with dementia as much as possible into the decision process. If that is not possible, or together with that the legal representative or guardian should be involved as well.

If there is no representative the direct family should be consulted and if there is no family, the care team and general practioner come into play. The so called cascade-approach.

Apart from the person with dementia there is also the issue of vaccination of staff and volunteers in the nursing homes and in a later stage also the visitors. The authors do not recommend mandatory vaccination (other than some doctors in The Netherlands), but refer to the heavy professional expectations towards care staff. They also state that the situation now is a snapshot at the beginning of December and things may change in the future. In that case they will update their publication.

From my perspective, the approach is very much in line with the modern way of thinking about the rights of a person with dementia linked to the rights of persons with disability. People with dementia have been hit very much in the first wave of Covid-19 and are therefore among the first groups to consider for vaccination strategies. It is important that the field discusses these issues before decisions are going to be taken.

Marc Wortmann. Consultant in strategy, governance, fundraising and events for non-profit organizations; former Executive Director of Alzheimer’s Disease International