Two new research centres to strengthen knowledge on dementia

Dementia diseases represent a growing public health challenge. At the same time, there are substantial needs for increased knowledge about how everyday life, care and support services can be developed to better meet the needs of people living with dementia and their relatives. Against this background, two new research centres are now being launched, with the ambition of contributing research that can have real impact in practice.

The centres have been granted long-term funding within the framework of Forte’s government assignment to strengthen research on care and support for people with dementia.

– It has always been important to strengthen knowledge in the dementia field, but today the issue has gained additional urgency due to the growing societal challenge of health inequalities. Within dementia care, we see that access to prevention, diagnosis, care and support varies between different groups, says Helle Wijk, professor and head of Demsam at the University of Gothenburg.

She also highlights the clear gap between research and everyday practice.

– At the same time, there is a significant gap between evidence and practice, where poor coordination, insufficient research infrastructure and low implementation of knowledge-based approaches hinder progress towards equitable care and support.

Demsam works in a cross-disciplinary way and in close collaboration with municipalities, regions, academia, industry, civil society, as well as people living with dementia and their relatives. The research is organised into several joint work packages, focusing on both structural and practice-oriented initiatives.

– Today, a large part of dementia care is delivered within municipal services, while these organisations often lack sufficient research infrastructure. A key part of Demsam’s work is therefore to strengthen the conditions for systematic knowledge development and collaboration, says Helle Wijk.

Examples of research areas include the development of inclusive and culturally adapted interventions, the design of physical indoor and outdoor environments that support orientation, safety and social interaction, and the development of more integrated care models to improve continuity.

Focus on individually tailored prevention and care

At the same time, the transdisciplinary research centre for individually tailored dementia prevention, care and support (Tracedem) is being established at Karolinska Institutet. The focus is on the entire disease trajectory – from prevention and early detection to care, support and quality of life in later stages.

– This is particularly important right now, as dementia is a growing public health challenge, while care and support services are often fragmented and inequitable. Despite national strategies, there are often few concrete solutions in practice for how person-centred and integrated care should function,” says Amaia Calderón Larrañaga, associate professor and director of Tracedem at Karolinska Institutet.

She also points to the significant potential that exists.

– We know that a large proportion of dementia cases can be prevented or delayed, and that early detection and appropriate support can make a major difference to quality of life. In Sweden, where care and support are divided between regions and municipalities, the need for improved coordination is particularly evident.

Tracedem’s research is transdisciplinary and brings together researchers from multiple scientific fields in close collaboration with healthcare services, municipalities and civil society. One example is research combining biomarkers, genetic information, lifestyle factors and cognitive tests to identify individuals at high risk of dementia and match them with preventive interventions.

Another important area is the development of digital decision-support tools for elderly care, based on register data, to support more person-centred working methods – for example in relation to behavioural and psychological symptoms of dementia – and to provide concrete recommendations in everyday practice.

– Our vision is that people living with dementia and their relatives should receive the right support at the right time, regardless of where they live or their background. In the long term, this is about improved quality of life, reduced inequalities and a more sustainable care and support system, says Amaia Calderón Larrañaga.