The “sweet spot” between autonomy and protection: A reflection from WYLD Representatives in Flanders


In conjunction with the Flanders Centre of Expertise on Dementia‘s 10th anniversary, the centre held an international conference themed ‘Quality of care, living and life for people with dementia’ in October 2018. The Centre selected 3 global participants from WYLD: Niamh Hennelly (Ireland), Melissa Chan (Singapore) and Molly Checksfield (United States of America), to join a unique field visit to Belgium in October 2018 to get a taste on the topic ‘quality of care for people with dementia’ in Flanders.

Niamh, Melissa and Molly give us an insight into their action packed week with the Flanders Centre for Expertise. Here is the reflection of our WYLD representatives.

In late October 2018, we had the pleasure of attending a week-long symposium with the World Young Leaders in Dementia (WYLD) colleagues at the Flanders Center for Expertise in Dementia in Antwerp, Belgium.

We feel grateful to have had this opportunity to learn how to implement person-centered care from such a well-structured system. Our hosts were gracious and friendly. They made us feel welcome, and participated in site visits as well as our exciting (yet cold!) walking tour of Antwerp and treated us to a round of Belgian beer at the end. We thank our colleagues at the Centre for their kindness and hospitality for making this experience so enjoyable and enlightening.

The first day kicked off with an introduction to person-centered care provided by the Centre and their partners in Flanders. The work being carried out and supported by the Centre is an impressive range of projects and programmes, including buddy projects, programmes to support people to live longer at home and researching community models of sustainable care. The Centre ensures that it focuses on what people with dementia want by engaging with people with dementia and learning from them, the experts.

We also learned about how each of our communities approaches quality care and ended the day refreshed and enlightened, ready to take on the week ahead.

We visited three sites to learn from leading care homes and partners about how they turn theory into practice. Each facility introduction and accompanying tour was educational, as we were able to learn about each location’s mission and witness firsthand what empowerment of people with dementia looks like. Each site’s model emphasized the importance of meeting individual needs rather than meeting the “bottom line.”

We were impressed by the integrated care model structure, funded by the Belgian government to improve support and care delivery for those with early-onset dementia. In addition to residential care, one of the sites provided daycare to people with early-onset dementia in a thoughtful, deliberate way. The daycare’s location outside of the care home reduces stigma and encourages participation and inclusion. Daycare attendees shop for food, make lunch and clean the dishes – activities that keep them engaged in the community instead of labelling them as “sick” or “unfit” to participate in activities they enjoy due to their diagnosis.

Active participation in life is celebrated and encouraged throughout Flanders, not just for those with young-onset but throughout the spectrum of the disease. Through each stage of Alzheimer’s, Flanders supports people’s capabilities rather than their incapacities. Whether through the lens of dementia-friendly communities across the region, daycare centres, or the multiple levels of residential care, each person providing care and support saw those living with the disease as people first. Every person with dementia’s own pace of life is respected. They are people first – individuals with a past and a future regardless of their diagnosis.

People with Alzheimer’s are integrated into the community in Flanders, and staff focus on what residents can do rather than what they cannot. Meeting standard protocols is not as important as providing individualized care that increases the quality of relationships and quality of life. These person-centred models strive to find the “sweet spot” between autonomy and protection, while first and foremost respecting the individual.

The week ended with a symposium at the Flemish Parliament celebrating the 10th year of the Centre. In conjunction with the 10th year celebrations, the Centre also launched the “Reference framework for quality of care and quality of life”. The Framework is the culmination of two years work into researching the views of people with dementia and carers into what constitutes quality of life and quality of care. Partners from across Flanders were introduced to the quality care reference framework produced by the Centre for Expertise and presented about their own work in furthering a person-centred care model.

The event concluded with WYLD representatives (Niamh, Melissa, Molly) presenting thoughts and learnings from the week to the audience. We were so delighted and grateful to have the opportunity to talk about our experiences of best practice dementia care in Flanders.

Our experience in Flanders was enlightening and inspirational and furthered our resolve to work on behalf of individuals living with Alzheimer’s and other forms of dementia. Care systems throughout the world should learn from the Flemish about how to recognize and meet the needs of community members living with Alzheimer’s. We returned home from this experience ready to explore new avenues to put people first and “forget dementia, remember the person.”

We appreciate the work of the Centre for Expertise on Dementia and its affiliates and look forward to working with this inspiring group in the future.

Interested in finding out more about the Flanders Centre of Expertise on Dementia and their work? Contact Olivier Constant or Herlinde Dely. Link to the digital version of the Reference Framework (English) here: You and me, together we are HUMAN (ENG)

We would like to say a big thank you to the Flanders Centre of Expertise on Dementia for hosting our 3 WYLD Members over the week in Flanders and for being such great hosts. Read more on the reflection article from the Flanders Centre of Expertise on Dementia on hosting our members here