PWO T1 Love and young onset dementia

Young-onset dementia (< 65 years) is estimated to affect 4,464 people in the Flemish Region in 2025, of whom approximately 1,800 will have a formal diagnosis (Hendriks, 2021). This has a major impact on the individual, their partners, informal caregivers, and the wider social context. Young-onset dementia can put pressure on partner relationships, especially in the area of sexuality and intimacy, which are essential for quality of life and well-being. Many prejudices and taboos about sexuality in people with young-onset dementia still exist. Partners often take on the role of primary caregiver, which can lead to a shift in roles and a decrease in sexual connectedness.

It is important to foster positive relational and sexual experiences in order to maintain the quality of life of both the person with young-onset dementia and their partner as much as possible. Sexuality is often overlooked by care providers, and there is little ethical reflection on the care for sexuality in people with young-onset dementia. Diverging views and attitudes among family members and care professionals often result in less person-centered care. A sound policy with targeted attention, awareness, and clear care plans is crucial.

Within the Flemish Dementia Plan, Flanders aspires to create a dementia-friendly society in which person-centered care and high-quality education and training of (future) care professionals are essential. The care context regarding sexuality in young-onset dementia remains underexplored in the (international) scientific literature.

This project aims to map the needs, perspectives, and attitudes of people with young-onset dementia, their partners, and care professionals in (semi-)residential and home care. The objective is to further support and optimize care concerning sexuality in people with young-onset dementia, in order to provide more person-centered dementia care and to maximize quality of life and well-being.