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COVID-19 vaccine consent and dementia: implications and advice

Information on gaining consent and supporting people living with dementia around the vaccination programme from Admiral Nurses and Dementia UK
Patient consent

Information on gaining consent and supporting people living with dementia around the vaccination programme from Admiral Nurses and Dementia UK

The implementation of the COVID-19 vaccination programme has led to an increase in enquiries from family carers and health and social care staff to the Admiral Nurse Dementia Helpline run by nurses at Dementia UK.

Common questions centre on how to navigate conversations, gain consent and support the person living with dementia around decisions on the COVID-19 vaccine.

    Information on gaining consent and supporting people living with dementia around the vaccination programme from Admiral Nurses and Dementia UK

    Picture: PA / Alamy


    The implementation of the COVID-19 vaccination programme has led to an increase in enquiries from family carers and health and social care staff to the Admiral Nurse Dementia Helpline run by nurses at Dementia UK.

    Common questions centre on how to navigate conversations, gain consent and support the person living with dementia around decisions on the COVID-19 vaccine.

    Here, we have compiled some useful information on the vaccine for nurses who may be caring for people who are living with dementia.

    Who needs the vaccine?

    The vaccination programme aims to protect those at highest risk from serious illness or death from COVID-19.

    The Pfizer/BioNTech and Oxford/AstraZeneca vaccines are now approved for use in the UK. They are effective vaccines given in two doses – and offer considerable protection after the first dose, at least in the short-term. The second dose completes the course and is important for longer-term protection:

    • The Pfizer/BioNTech vaccine second dose is given 3-12 weeks after the first dose.
    • The Oxford /AstraZeneca vaccine second dose is administered 4-12 weeks after the first dose.

    The vaccines are for adults aged 18 and over. The Joint Committee on Vaccination and Immunisation is prioritising the first doses of the vaccine for as many people as possible on the priority list. This includes people living with dementia, who are over 65 and/or are living with other long-term health conditions.

    The vaccine is not compulsory, but is recommended.

    Preparation is crucial

    • Get prepared iconGather information about the COVID-19 vaccine from sources, such as UK government websites, the NHS, the RCN, the British Medical Association and the Medicines & Healthcare products Regulatory Agency
    • Find out what your care provider’s vaccination programme plans are to give you time to discuss any potential questions the person with dementia – or their family carer – may have
    • Consider what you already know about the person’s past wishes, choices or experiences of vaccinations. For example, do they usually have the annual flu vaccine or have they had any side effects in the past?

    Gaining consent

    • Before the vaccine is given, consent must be obtained from the person receiving it or through a ‘best interests’ decision, compliant with the Mental Capacity Act 2005.
    • Always assume a person with dementia has the capacity to make the decision in question unless evidence clearly proves otherwise.
    • If there is a registered lasting power of attorney (LPA) for health and welfare for the person with dementia, they can make health decisions on their behalf, including whether they should receive vaccinations. The individual risks and benefits should be clearly outlined so that the LPA can make a decision about receiving the vaccine.
    • If there is no LPA for health and welfare in place, then healthcare professionals must make a decision in the person’s ‘best interest’ based on their previous wishes and decisions, as well as close consultation with friends, family members or anyone else who knows the person with dementia closely.

    Document all consent decisions

    Gain consent iconAll consent from people living with dementia must be documented.

    The government has provided a number of templates to record consent which should be given at the time of discussing and receiving the vaccine, or downloaded and read before.

    Nurses need COVID-19 vaccination consent forms and letter templates for:

    Communicate with respect

    A masked nurse communicates respectfully with an older woman patient
    Picture: PA
    • It is important that the person with dementia retains their independence and feels in control as much as possible.
    • Keep noise and distraction to a minimum.
    • Use short sentences and simple language to explain what needs to be done and why it is important.
    • Give the person time to hear and ask you any questions.
    • Pause between each of your sentences.
    • Visual prompt cards could be used to provide further explanation.
    • A warm and friendly tone can help to relieve any nervousness that the person with dementia may have about receiving the vaccine.

    Choose your timing well

    • Choose your timing well iconMake sure you choose a time and place that suits the person with dementia
    • Consider when is the best time of the day for them to discuss or have the vaccine. Sometimes people with dementia need more time to do and understand things
    • Be patient. If the person is experiencing heightened anxiety or distress, rebook the vaccine at a different time and consider how you will support them differently next time

    What nurses can say to help reassure people with dementia

    • ‘I would like your permission to give you the vaccine’
    • ‘The injection is to protect you from the COVID-19 virus’
    • ‘The injection won’t give you the COVID-19 virus’
    • ‘Some people can get a sore arm, headache or fever after the injection’

    Ensure the vaccine care setting is comfortable

    • During vaccine hold something iconFind out how to best support the person with dementia. This might mean accompanying them to have their injection, but will depend on the care setting and its policies
    • Advise the vaccinator to introduce themselves – especially if they are wearing a mask or visor – and remind the person receiving the vaccine that it is given by an injection in the arm
    • Consider distraction techniques while the injection is being administered; this could be conversation, music, a reassuring touch or hand massage
    • Getting the person with dementia to hold a favourite item can also bring comfort. This can be helpful as they wait for a short period after the vaccine to monitor for any side effects

    What to do and say after administering the vaccine

    • Reassure the person with dementia after the injection and be mindful of your tone and body language.
    • You could offer a drink afterwards, or do a favourite activity of theirs, or rest if they are feeling tired.
    • Check to see how they are feeling, as it might have been a tiring time for them, as well as for any physical side effects.
    • Ensure their LPA or family carer is informed about the administration of the vaccine, and make arrangements for the second dose – for example, fill out a vaccination record card.

    If additional or adverse side effects are experienced, they should be reported through the Coronavirus Yellow Card reporting site.

    It may take a few weeks after the second injection for protection to be built up from the vaccine.

    Taking infection control precautions

    No vaccine is 100% effective, so some people may still get COVID-19 after the vaccine, but its effect should be less severe.

    It is hoped that the vaccination programme, combined with testing and continuing infection control precautions, will improve everyone’s lives.

    However, there is still a need to wear a face covering, take infection control precautions and follow government coronavirus guidance.

    View our COVID-19 resource centre


    Find out more


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