Subnetworks within the field of dementia

The purpose is to drive the development of Nordic knowledge in order to contribute to good, equal dementia care in the Nordic countries. There are three subnetworks during the 2024-2026 term of office:

• Dementia and Ethnic Minorities
• Dementia and Indigenous Peoples
• Dementia and Intellectual Disability.

Dementia and Ethnic Minorities

Dementia and ethnic minorities in the Nordic countries is an area requiring more knowledge. People with non-Nordic backgrounds are probably just as likely to develop dementia as those born in the Nordic countries, but fewer seek care. International research shows that ethnic and cultural backgrounds play a major role in the type of care sought.

Dementia and its cognitive symptoms are viewed and interpreted differently around the world. Access to health and social care in a person’s own native language can be extremely important, even if the person with dementia has lived in the country for a long time. At the same time, research is not conclusive. For many people, continuity in terms of staff can be more important than ethnically profiled housing. Linguistic and cultural competence is important in order to provide the target group with personalised health and social care, and training of staff with minority backgrounds is another theme that is engaging the network.

Various tools have been developed in the Scandinavian countries. The Danish Dementia Research Centre has published factsheets on dementia in various languages. The Norwegian National Advisory Unit on Ageing and Health has compiled information and relevant tools on its website. The strategic unit Migration and Cognition in Region Skåne is working to ensure that all elements of dementia care shall be safe and equal. Their website provides information and material about the care of foreign-born people with dementia.

The network works to ensure that older adults with dementia from ethnic minorities, as well as their relatives, receive adapted health and social care services of a high quality. The network meets once or twice a year, and works with the sharing of experiences, collaboration and dissemination of knowledge. Many of the members collaborate on research projects and co-author scientific articles.

The subnetwork for dementia among ethnic minorities has been in existence since 2012, and brings together ten or so experts from the Nordic countries.

Dementia and Indigenous Peoples

Research from countries such as Canada, the USA and Australia shows that indigenous peoples around the world are far more vulnerable to dementia than the rest of the population in the majority societies in which they live. Overall knowledge of the experiences of Sami and Inuit with dementia is very limited, and needs to be increased in order to develop health and social care services where language and cultural backgrounds are utilised.

The subnetwork Dementia and Indigenous Peoples gathers, exchanges and disseminates experiences and knowledge of studies and treatment of Sami and Inuit dementia sufferers in the Nordic region.

The sub-network Dementia and Indigenous Peoples was established in 2019 to bring together researchers and practitioners in health and social care professions from Finland, Norway, Sweden and Greenland.

Further information

The Norwegian National Advisory Unit on Ageing and Health has a theme page containing informational material, videos and digital tools related to dementia from a Sami language and cultural perspective.

Rabasvuohta demeanssa birra (Talking Openly About Dementia) is an information film about dementia in the North Sami language. The film is available with Swedish, Finnish and Norwegian subtitles.

Another research project currently underway in Greenland is developing tools to study dementia.

Dementia and Intellectual Disability

People with intellectual disabilities in the Nordic countries are living longer. For some, the first symptoms of dementia in intellectual disability can appear as early as the age of 50, but can be difficult to detect. Symptoms that often appear later in the course of the disease in others can manifest themselves at an early stage in people with intellectual disabilities.

For the individuals themselves, staff and co-residents, it can be a big change when a person in a residential care home or a day centre first suffers from dementia. In addition to the activities, the way the person is treated also needs to be adapted to the person’s circumstances. The way the person is treated also needs to change over time. This poses major challenges for municipalities in the Nordic region.

The purpose of the subnetwork for intellectual disability is to establish stable networks between Nordic competence environments, and to systematise the sharing of experience around investigation, diagnosis, prevention, health care and social care for people with dementia and intellectual disabilities.

The Norwegian Advisory Unit on Ageing and Health, the Nordic Welfare Centre and the Norwegian Sámi Parliament have produced the website Lättläst om demens (Easy-to-read information about dementia).  The site is available in five Nordic languages, English, and Lule, Northern and Southern Sámi. In Sweden, the Swedish Dementia Centre and the national association Riksförbundet FUB have developed two online training courses, which you can find on this page: Åldern har sin rätt – om att åldras med intellektuell funktionsnedsättning (Age has its rights – about ageing with an intellectual disability). One is aimed at people with intellectual disabilities and the other at home support staff and staff at residential care homes and day centres. Relatives can also find the courses useful.

The Norwegian National Advisory Unit on Ageing and Health has developed a number of training programmes on ageing and dementia among those with an intellectual disability. These courses are aimed at residential care home and day centre staff, specialists and families. The Danish Authority of Social Services and Housing has a page on the subject of dementia and intellectual disability: Aldring, demens og udviklingshæmning (Ageing, dementia and intellectual disability).

The subnetwork for Dementia and Intellectual Disability was established in 2015. The experts in the subnetwork come from national knowledge centres, as well as research and practitioner environments in the Nordic countries.