Consent to coronavirus (COVID-19) vaccination

Older people and those with dementia were among the first groups to be offered a coronavirus vaccine. Deciding whether to have the vaccine or not is a choice for those who are offered it. However, some people with dementia will not be able to decide for themselves.

How are the vaccines being delivered?

Four vaccines have now been approved by the UK regulator as safe and effective. All provide high levels of protection against coronavirus symptoms and severe COVID-19.

Under the national vaccination programme, these vaccines are now being offered to people in very large numbers. More than 30 million people in the UK have been fully vaccinated, and millions more have received a first vaccine. Other vaccines are also likely to become available in the future.

Some people living with dementia will have lost the ability to decide whether to have the vaccine or not. This raises important legal and ethical issues for the person and those who care for them. The Mental Capacity Act 2005 is a crucial law in these situations.

What if the person still has mental capacity to decide?

This is fairly straightforward. If a person with dementia is able to make the decision for themselves, they can choose whether to have the vaccine or not. They just need to give informed consent to do so – the same as for any medical procedure. That decision is theirs to make and must be respected, even if to others it seems unwise.

A health professional should explain clearly how the vaccine works and how it can keep them well, together with any risks such as side-effects. Any discussion of the risks and benefits should be tailored to the person as much as possible, taking into account their age, gender, ethnicity and other health conditions. The professional must communicate with a person with dementia in the way that works best for the person and consider how quickly or reliably they are able to process the information. The person should be supported as much as possible to make their own decision before any check of their mental capacity is done.

If appropriate, risks and benefits that go beyond the individual should be explained. The latest evidence is that vaccines do help to reduce the spread of coronavirus, as well as reduce symptoms. A person living in a care home who is vaccinated is therefore helping to protect other residents, and so vaccination will have a wider benefit. But there must be no coercion, if the person has made an informed decision to refuse.

What if the person with dementia no longer has mental capacity to decide?

The Mental Capacity Act 2005 (MCA) says that we must always support decision-making for someone who does not have capacity. As well as giving people information in a way they can understand, this could mean communicating with them at their most alert time of day. The MCA also says that we must assume capacity unless we have reasonable doubt. If there is reason to doubt capacity, this needs to be assessed by an appropriate person, often their GP. 

If the person does not have mental capacity to make the decision themselves, then a ‘best interests’ decision about vaccination will need to be made on their behalf. The person should still be involved as much as they can. If the person with dementia has appointed an attorney for health and welfare, the attorney should discuss things with professionals, but it is ultimately the attorney’s decision acting in the person’s best interests.

Otherwise, the decision will be made by health professionals in consultation with those closest to the person and those who know them best. The best interests decision-making must focus on the individual person and include looking at the risks and benefits of them having or not having the vaccine. If possible, the decision should be made in good time before any possible vaccination and recorded in the person’s care record.

Under the MCA, the best interests decision must also take into account the person’s past and present wishes and feelings. For example, have they previously held strong views against vaccines or have they tended to follow the advice of the doctor? Have they always been public-spirited, thinking about the well-being of others?

There may be other benefits to the person from vaccination in the future, such as greater freedom to travel or engage in activities. These might also be relevant when looking at the person’s best interests. 

The care home may have an interest in all its residents being vaccinated but it must not exert undue influence or seek to override a best interests decision.

Our dementia advisers are here for you.

Court cases relating to the vaccine and dementia

In a recent legal case, the Court of Protection ruled that it was in the best interests of an 80-year-old woman with dementia and diabetes living in a care home to have the coronavirus vaccine. This was even though her son had objected to this because he was sceptical about the vaccine.

The woman lacked capacity to decide for herself, but had previously had the flu vaccine and she placed a lot of trust in her doctors, who favoured vaccination. She said that she wanted ‘whatever is best for me’. There had also been recent coronavirus outbreaks at the care home. 

The best interests decision in this case was made from the woman’s trust in doctors and the immediate risk of COVID-19 for her. This was based on her health and individual situation – compared with the low risk of a serious adverse reaction to the vaccine. 

A second court case involving a person with dementia in similar circumstances reached the same conclusion.

By contrast, a more recent case decided that it was not in the best interests of an 86-year-old woman with dementia living in a care home to have the vaccine. Key factors in this decision were her previous refusal of flu vaccinations and her strongly-expressed wish not to have the coronavirus vaccine now. Importantly, the court was keen to establish her wishes, feelings and beliefs, as distinct from those of family members.

Though the court noted the decreasing infection risk in care homes, it did suggest that – in purely medical terms – it would be in this woman’s best interests to be vaccinated. But best interests under the MCA is about more than that: it involves looking at what the person themselves would have wanted if they were able to decide. This case is a good example of that.

Where can I find out more about the benefits and risks of coronavirus vaccines?

Coronavirus vaccines have been developed a lot more quickly than normal. At present, results of other vaccine trials are emerging every few weeks.  

As with other aspects of coronavirus, there is a lot of misinformation being spread about COVID-19 vaccines. Be especially wary of sensational stories or claims made on social media. 

Further advice

You can get an independent general overview of progress with COVID-19 vaccines at websites such as Wellcome

The British Society for Immunology has a video on YouTube about COVID-19 vaccines.

For information about how the vaccine is given, as well as benefits and side effects, visit the Public Health England or NHS vaccine pages. For more specific advice about your personal situation speak to a health professional you trust, such as a GP. 

If you want to take part in a vaccine trial, visit the NHS coronavirus vaccine research page.

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