Subnetworks within the field of 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 and people with a migrant background in the Nordic countries is an area in which further research is needed. It seems likely that people with a foreign background are at equally high risk of developing a form of dementia as those who are born within the Nordic region, but fewer seek care. International research shows that ethnocultural background plays a major role in determining the type of care people seek. The concept of dementia, or the symptoms that dementia can cause, is interpreted differently in different parts of 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.

In the Scandinavian countries, a number of different tools have been developed within this area. The Danish Dementia Research Centre has published a number of digital publications on the subject of dementia and ethnic minorities (in Danish). Norwegian Advisory Unit on Ageing and Health in Norway provides an e-learning course for relatives of migrants with dementia (in Norwegian). Region Skåne in Sweden has developed online training courses on the subject of dementia, which are available in a variety of languages (in Swedish).

The network works to ensure that older migrants with dementia and their relatives have access to bespoke, high-quality treatment and social care services. The network meets once or twice a year, and has structures in place to promote collaboration and the sharing of knowledge and experience. Many of the members have published scientific papers together.

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. There is little or no collected research or knowledge on the situation of Sámi and Inuits with dementia in the Nordic countries. Norwegian Advisory Unit on Ageing and Health in Norway has published a number of digital tools, publications and information films. The publications are available in Norwegian, North Sámi, Lule Sámi and South Sámi.

The subnetwork for dementia and indigenous people seeks to identify the need for new research, skills training, and the translation and adaptation of diagnostic tools into the Sámi languages and Greenlandic.

The subnetwork for dementia and indigenous people was established in 2019. The participants are local authority representatives, researchers and practitioners within the healthcare and social care professions, from Finland, Norway, Sweden and Greenland.

Breaking the culture of silence about health among the North’s indigenous people (in Norwegian)

Webinar about dementia and indigenous people (scandinavian languages)

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 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.