“This also matters to me”: what does adherence to dementia risk reduction interventions mean to members of the public?

Growing evidence highlights the potential of multidomain lifestyle-based interventions to reduce the risk of cognitive decline among older adults at higher risk of cognitive impairment. Within these complex and often demanding interventions, adherence has emerged as a key factor influencing both outcomes and impact. Numerous studies have explored adherence from the perspective of researchers which is often defined as the extent to which a person’s behaviour corresponds with agreed recommendations from a healthcare provider. However, less is known about how members of the public understand and experience it. This article presents insights gathered from Advisory Boards established within three European-funded projects, as part of Public Involvement activities led by Alzheimer Europe in collaboration with researchers in the projects. The discussions involved 23 members of the public (lay people with and without dementia) from nine European countries and focused on adherence in the context of research-based multidomain lifestyle interventions to reduce dementia risk. Feedback from Advisory Boards members were grouped in three overarching themes: (1) “Baking your own cake” which highlights the relevance and understandings of adherence from members of the public; (2) “Striking a balance” which refers to the complexity and influencing factors linked to adherence; and (3) “A two-way process” which emphasises the involvement of members of the public and the importance of clear communication and appropriate support throughout the intervention process. Promoting adherence requires recognising participants as active partners in research which may not only improve adherence itself but also enhance the relevance, effectiveness and long-term impact of dementia prevention efforts.