Strengthening services for people with dementia and intellectual disability
29 touko 2026
As more people with intellectual disability in the Nordic region reach older age, services are facing new needs related to ageing and dementia.
This was the topic of a recent webinar organised by the Nordic Welfare Centre together with the Nordic thematic network for dementia and people with intellectual disability. The webinar gathered researchers, professionals, decision-makers and organisations from across the Nordic region to discuss competence, collaboration and leadership in services for this growing group.
Within Nordic cooperation, sustainable and accessible welfare services are a priority, including ensuring that people with dementia have equal access to high-quality care and support.
More knowledge and research are needed
Several presentations highlighted that dementia is significantly more common among people with intellectual disability than in the general population. Research presented by Eva Flygare Wallén Researcher from Östersund Municipality highlighted that people with Down syndrome have a markedly increased risk of dementia, with studies indicating that around half may have developed clinical dementia by around the age of 60.
Hanna Bozkurt Åhman Research supervisor from Region Uppsala and Uppsala University presented ongoing research on dementia among people with intellectual disability and highlighted the need for more knowledge, better assessment methods and earlier diagnosis.
More knowledge is needed at several levels.
– Hanna Bozkurt Åhman, Research supervisor, Region Uppsala and Uppsala University
Several speakers also highlighted challenges connected to high staff turnover, limited knowledge about ageing and dementia, and insufficient collaboration between healthcare services, hospitals and local authorities.
Leadership and political prioritisation matter
Leadership and political responsibility were recurring themes throughout the webinar. Marika Ulfson, Head of Department, Östersund Municipality and Åsa Heikkilä, Development Manager, Norrbotten Municipalities highlighted that competence development requires long-term planning, prioritisation and support for both managers and staff.
The webinar also highlighted growing recruitment challenges within disability services and increasing pressure on managers and employees. In Sweden alone, the sector could face a shortage of 40,000 employees by 2033.
Several presentations focused on the importance of knowledge-based care, good working conditions and long-term competence development within services. Cato Brunvand Ellingsen, Social Care Worker, deputy member of the Storting and political adviser to the Norwegian Association of Disabled People also spoke about the importance of ensuring that people with disabilities are not deprioritised when resources become limited.
It is the disabled who are the first to lose out when funds and staff become scarce. And we also know that services with low prestige, small target groups, high complexity and little political pressure are the ones that often lose out in such situations.
– Cato Brunvand, Social Care Worker, deputy member of the Storting and political adviser to the Norwegian Association of Disabled People
Competence development in practice
The webinar also presented several concrete examples of competence-building initiatives from across the Nordic region.
Examples included the Norwegian programme Kompetanseløft 2025, the Swedish educational model Stjärnmärkt LSS and the training programme Mitt livs ABC. Common to the initiatives was a focus on practical learning, person-centred care and strengthening competence across entire workplaces.
Several speakers pointed to that competence development should not be a one-time effort, but part of everyday work and organisational culture. Reflection, practical tools and collaboration within workplaces were highlighted as important factors in creating sustainable services and better support.
Good support requires listening and collaboration
Another important message from the webinar was that support and care must be based on the person’s own needs, wishes and quality of life.
Krister Ekberg presented perspectives as a person with lived experience who receive support services. Staffing shortages, lack of continuity and unclear routines were highlighted as challenges in everyday life. At the same time, Ekberg emphasized the importance of calmness, predictability and trust in daily support was emphasized.
Several experts stressed the importance of person-centred care, clear communication and adapting support as dementia progresses. The importance of recognising gradual changes connected to dementia and maintaining quality of life for as long as possible was also highlighted.
The final part of the webinar focused on collaboration between services and professions. Healthcare professionals, psychologists, municipalities and specialised dementia services all play important roles in assessment, follow-up and support. Several speakers underlined the importance of cooperation between services in creating safe and coordinated care pathways. Lise Kronberg Salem, Chief Physician at the Memory Clinic, Department of Neurology at Rigshospitalet, Denmark, also emphasized that people with intellectual disabilities should have equal access to high-quality dementia assessment, just like any other patients in the clinic.
Throughout the webinar, one message remained clear: strengthening competence, collaboration and leadership is essential to ensuring good support and quality of life for people with dementia and intellectual disability.
