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 more vulnerable to dementia than the rest of the population in the majority societies in which they live. Among indigenous peoples from the Nordic region, little is known about the conditions of people with mild cognitive impairment or dementia. More knowledge is needed so that we can develop health care and social care services that take into account the language and cultural background of people who use the services.

The subnetwork Dementia and Indigenous Peoples was established in 2019 Current participants come from Finland, Norway and Sweden. Currently, there is no representation from Greenland, and the subnetwork therefore focuses on conditions for the Sami. Researchers and practitioners who work in the subnetwork have expertise in health and social care for the Sami. They collect, exchange and disseminate experiences and knowledge about the assessment and treatment of Sami people with mild cognitive impairment or dementia in the Nordic countries. The subnetwork provides strategically important knowledge that also contributes to policy development.

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. It is subtitled in Swedish, Finnish and Norwegian.

Dementia and people with Intellectual Disability

People with cognitive impairment in the Nordic region are living longer. For some people with intellectual disabilities, the first symptoms of dementia can appear as early as age 40 to 50, but these can be difficult to detect. Symptoms that often appear later in the course of the disease for other people may appear early in people with cognitive impairment. People with Down syndrome are at high risk of developing dementia.

When someone in a residential care facility or day programme suffers from dementia, it can mean a big change for them, the employees, and the other residents or participants. Both their activities and treatment must also be adapted to the individual’s circumstances. Treatment must also change over time. This presents major challenges for municipalities in the Nordic region.

The purpose of the topical network on developmental disability and dementia is to establish a stable network between Nordic competence environments and to systematise the exchange of experiences regarding assessment, diagnosis, prevention, healthcare, and care provision for people with dementia and intellectual disabilities.

The Norwegian National Centre for Ageing and Health, the Nordic Welfare Centre, and the Sámi Parliament have developed the website Lettlest om dementia (Easy reading about dementia). The website is available in five Nordic languages, English, Lule, Northern and Southern Sámi. In Sweden, the Swedish Dementia Centre and the Swedish National Association for People with Intellectual Disability have developed two online courses, which can be found (in Swedish) on this page Åldern har sin rätt – om att åldras med intellektuell funktionsnedsättning (Age has its rights – on ageing with an intellectual disability). One is aimed at people with disabilities and the other at assistants and employees in group homes and day programmes. Relatives can also benefit from the training.

In Norway, the Norwegian National Centre for Ageing and Health has developed several training programmes on old age and dementia in people with developmental disabilities. The courses are aimed at personnel in group homes, day programmes, specialists and relatives. The Danish Authority of Social Services and Housing has a topical website on dementia and cognitive impairment called Aldring, demens og udviklingshæmning (Ageing, dementia and developmental disability).

The topical network on dementia and developmental disability was established in 2015. The experts in the topical network come from national knowledge centres, as well as research and practice environments in the Nordic countries.

Members:

Anita Norrdahl, Finland
Rut Nordlund-Spiby, Finland
Frode Kibsgaard Larsen, Norway
Lene Kristiansen, Norway
Rita Larsen, Norway
Per Christian Wandås, Norway
Christina Rørvig-Løppenthien, Denmark
Lise Cronberg Salem, Denmark
Hanna Bozkurt Åhman, Sweden
Eva Wallén, Sweden
Karl Olsson, Sweden
Marika Ulfson, Sweden