Loving in Young-Onset Dementia
In this project, we aim to map out the needs, perspectives, and attitudes regarding sexuality of people with young-onset dementia, their partners, and involved care professionals in (semi-)residential and home care settings. The goal is to optimize care related to sexuality for people with young-onset dementia through the development of support materials and to strengthen the competencies of (future) caregivers.
Young-onset dementia can put pressure on the partner relationship, especially in terms of sexuality and intimacy, as the partner often takes on the role of primary caregiver. In 2025, many prejudices and taboos still exist around this topic. Sexuality is often overlooked by professional caregivers, and there is little ethical reflection in care. At the policy level, there is a lack of practical tools and frameworks to provide appropriate care.
This project aims to:
- Increase understanding of the sexual experiences and needs of people with young-onset dementia and their partners.
- Promote a more positive attitude, increased attention, and awareness among care professionals.
- Strengthen competencies through awareness and training based on research findings.
- Contribute to policy and care optimization by providing support materials.
Problem Statement
Young-onset dementia (under 65 years) is expected to affect approximately 4,464 people in the Flemish Region in 2025, with around 1,800 receiving a formal diagnosis. This has a significant impact on the individual, their partners, caregivers, and the broader social context. Sexuality and intimacy are essential for quality of life and well-being, but are often neglected in care. Partners frequently become primary caregivers, leading to role shifts and reduced sexual connection.
Positive relational and sexual experiences are crucial to maintaining the quality of life for both the person with young-onset dementia and their partner. However, care providers often overlook sexuality, and there is insufficient ethical reflection. Diverse views and attitudes among family members and caregivers can make care less person-centered. Effective policy with targeted attention, awareness, and clear care plans is essential.
Flanders, through its dementia plan, strives for a dementia-friendly society where person-centered care and quality training for (future) caregivers are key. The care context regarding sexuality in young-onset dementia remains underrepresented in scientific literature.
Objectives
The project has three main objectives:
- Gain insight into the changing sexual and relational experiences of people with young-onset dementia and their partners through literature review and needs assessment.
- Improve attitudes toward sexuality in young-onset dementia among caregivers and policymakers in care organizations. Based on the results, we aim to break taboos, raise awareness, and make sexuality a discussable topic among people with young-onset dementia, their environment, policymakers, and caregivers.
- Investigate policy aspects related to sexuality in young-onset dementia within care organizations and develop support materials to assist in policy development.
In summary, this project:
- Enhances understanding of sexual experiences and needs.
- Promotes positive attitudes and awareness.
- Strengthens competencies through awareness and training.
- Supports policy and care improvement through support materials.
This contributes to more person-centered care that respects the sexual needs of people with young-onset dementia, as outlined in the Flemish dementia plan and WHO guidelines.
Project Team
Project partners
- KUL, Institute for Family and Sexuality Studies: Frauke Claes (PhD and sexologist).
- WZC Ten Rozen (Aalst): Nathalie Bruyland (director).
- WZC Denderrust (Herdersem): Freddy Horlez (director)
- Zorgbedrijf Antwerpen (incl. WZC Joostens): Raf Wuyts (psychological consultant).
- Jacobs home nursing team: Maaike Jacobs (director)
- Collectif Auguste et les autres (Brussels and Walloon Brabant; association for persons with young dementia and family caregivers): Lydie Amici (director).
- Interzorg (NL, (semi)residential organization for persons with young dementia): Rogier Hulsebosch (CDO/WZC, Research and Innovation).