Subnetworks within the field of dementia
Welfare policy, Dementia
There are a number of small, separate groups within the Nordic region. The Nordic Welfare Centre coordinates three subnetworks within the field of dementia for these groups: the subnetworks for ethnic minorities, people with intellectual disabilities, and indigenous people.
The subnetworks bring together researchers, senior practitioners and other experts. The aim is to promote the development of expertise and the sharing of experience and to create a uniform standard of dementia care irrespective of background or circumstances.
Dementia and ethnic minorities
Dementia among ethnic minorities in the Nordic countries is an area requiring further research. People with non-Nordic backgrounds are probably just as likely to develop dementia as those born in the Nordic countries, but fewer seek healthcare and social support. International research reveals that ethnic and cultural backgrounds play a major role in the type of care sought. Dementia and symptoms of cognitive decline are viewed and interpreted differently around the world. The provision of treatment and care in the patient’s mother tongue may be important, even if the patient has lived in their adopted country for a long time. However, the research is not clear-cut. For many, continuity of personnel may be more important than an ethnically profiled residential setting. Linguistic and cultural competence are important in terms of providing the target group with treatment and care that is tailored to their specific needs, and the training of people with a minority background is another aspect that the network focuses on.
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 network’s aim is to ensurethat older adults with dementia from ethnic minorities, as well as their relatives, receive adapted healthcare and social services of a high quality. The network meets once or twice a year, and has structures in place to promote collaboration and the sharing of knowledge and experience. Many members collaborate on research projects and co-author scientific articles.
The subnetwork for dementia and ethnic minorities was established in 2012 and brings together around 30 researchers and different professions from the Nordic countries.
Dementia and indigenous people
Research from countries such as Canada, USA and Australia shows that indigenous peoples around the world are far more at risk of developing dementia than the majority populations they live amongst. Overall knowledge of the experiences of Sami and Inuit persons with dementia is very limited and must increase to develop healthcare and social services where languages and cultural backgrounds are utilised.
The sub-network 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 welfare professions from Finland, Norway, Sweden and Greenland.
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.
The project Ageing in the Arctic (AgeArc) is ongoing in Greenland to bridge gaps in knowledge regarding the living conditions of the elderly. Another research project currently underway in Greenland is developing tools for studying dementia.
Dementia and intellectual disabilities
People with intellectual disabilities in the Nordic countries are living ever longer. The first symptoms of dementia often appear in such people when they are still in their fifties, but they can be hard to detect. Symptoms that, in other people, often emerge when the illness is at a more advanced stage, can be an early sign of dementia in people with intellectual disability. When a person living in a residential care home or attending a day centre develops symptoms of dementia, it can be a huge change for the staff and fellow residents. The activities and way in which the person is cared for will need to be adapted to the sufferer’s individual circumstances. The care will also need to change over time. These are new challenges for local authorities in the Nordic countries.
The aim of the subnetwork for intellectual disabilities is to establish stable networks between Nordic competence centres and to systematise the sharing of experience relating to the investigation, diagnosis, and provision of medical care and social care for people with dementia and intellectual disabilities.
Norwegian Advisory Unit on Ageing and Health in Norway has, together with Nordic Welfare Centre and the Sámi parliament in Norway, published the web resource What is dementia. The web resource is available in five Nordic languages, three Sámi languages and English. In Sweden, Swedish Dementia Centre and FUB, The Swedish National Association for People with Intellectual Disability, provide two e-learning modules called Åldern har sin rätt – om att åldras med intellektuell funktionsnedsättning. The first module is for professionals working at special accommodations or sheltered workshops for people with intellectual disability. The module can also be useful for relatives and informal carers. The other module is for people with intellectual disability.
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 National Board of Social Services has a theme page with information on dementia and intellectual disability.
The subnetwork for dementia and intellectual disabilities was set up in 2015. Its members represent national expert institutions and research and practice centres in all Nordic countries.
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