The United Kingdom’s recent establishment of a national dementia registry marks a significant advancement in efforts to accelerate research and expand access to clinical trials for dementia patients. However, experts emphasize that progress in combating dementia extends beyond medical treatment and prevention, highlighting the importance of addressing the social and emotional challenges faced by those living with the condition.
Jonathan de Jong, a filmmaker and author based in Amsterdam who has spent years documenting dementia care across various countries, argues that conventional approaches often overlook the broader needs of individuals affected by the disease. According to de Jong, the stigma associated with dementia and the experience of social exclusion can be more difficult to navigate than the symptoms themselves.
In South Korea, for example, the Superbrain program integrates cognitive training, physical exercise, enhanced social interaction, and health risk management to slow cognitive decline. This holistic approach treats the individual as a whole rather than focusing solely on the medical aspects of dementia. It underscores a shift toward prevention strategies that engage multiple facets of a person's well-being.
Despite advances in treatment, de Jong points out that many individuals with dementia struggle primarily with the loss of identity and the negative societal perceptions linked to their diagnosis. He suggests that fear and misunderstanding surrounding dementia contribute significantly to this experience, further isolating those affected.
To improve quality of life for people with dementia, de Jong calls for balanced investment—not only in medical research but also in social care and community support. He highlights the responsibilities of governments, healthcare systems, families, and communities in fostering environments where individuals with dementia can maintain social participation and a sense of empowerment.
“As well as advancing scientific understanding and treatment options, we must address how society cares for and includes people living with dementia,” de Jong said. “Ensuring meaningful engagement and reducing stigma are crucial components of creating a better future for those affected.”
His perspective reflects a growing recognition among dementia experts that addressing social factors and identity preservation is key to comprehensive dementia care. As the UK’s dementia registry aims to improve clinical outcomes, parallel efforts to enhance societal inclusion and support remain essential to holistic progress.