Determinants underlying COVID‐19 vaccination behaviour in people with young‐onset dementia and their carers in the United Kingdom: A mixed‐methods study

Background

Vaccine hesitancy is a risk to global health and has become particularly salient considering the COVID‐19 pandemic. To date, no studies have investigated COVID‐19 vaccination behaviour in people with young‐onset dementia (YOD) and their carers. This study aimed to fill this gap.

Method

26 participants with YOD and 24 carers for a person with YOD (i.e., aged <65 years) from the UK were enrolled. Participants filled out a self‐administered online questionnaire including demographic data, history of COVID‐19, and adulthood vaccination. Following this, participants attended a one‐to‐one semi‐structured interview focused on their experiences and thoughts on COVID‐19 vaccines and the vaccination process.

Result

The mean age of participants with YOD was 42.2 (range 26‐60), 88.5% were male, and 96.2% self‐identified as Black. The mean age of carers was 31.7 (range 19‐54 years), 70.8% were male, and 79.2% self‐identified as Black. In total, more than 30 reasons for acceptance and hesitation were identified. Willing to protect themselves, loved ones, and the community were identified as important reason to accept the vaccination by both groups. Recommendations from family members or healthcare professionals and wanting to go back to normal life were two of the most commonly repeated acceptance reason for people with YOD. Meanwhile, two of the most frequently mentioned acceptance reasons in carer groups were believing vaccination is the right thing to do and knowing the severity of COVID‐19.

Several causes of vaccine hesitancy were mentioned by both groups, including fear of vaccine side effects and hearing negative news about the vaccination. In addition, people with YOD, but not carers, also identified fear of needles and suspicion that vaccination would exacerbate dementia as important causes of vaccine hesitancy. Important difficulties experienced in the vaccination process included long queues for vaccination, remote vaccine centre locations, and needing to be accompanied to the hospital for each dose.

Conclusion

Participants delayed or refused COVID‐19 vaccination largely due to resolvable reasons such as a lack of time, issues around queuing, inaccurate information about vaccines, or previous negative experiences. Future research should explore the factors of COVID‐19 vaccination behaviour in women and in other ethnic groups.