Older people with dementia - do we detect them, do they receive adequate care, and what are their care trajectories? A mixed-methods project with a focus on primary care and vulnerable groups

Dementia is a major public health problem not only for affected individuals but also their families. In Sweden, care for people with dementia is regulated by national guidelines.

However, previous research as well as an evaluation by the National Board of Health and Welfare have pointed to limited adherence to these guidelines with regards to both diagnostic processes and provided care.

The National Board of Health and Welfare identifies several areas for improvement, two of which are addressed in this application: better conditions for people with dementia in primary care and a need for more qualitative data describing the content and quality of provided care.Primary care is often the first point of contact with health care and plays a key role both in the diagnostic process and in the provision and coordination of care for older people with dementia.

Yet, there is little research on primary care for older people with dementia in Sweden.

One reason is the lack of a primary care register at the national level.With the use of both quantitative and qualitative methods, this project aims to explore barriers to dementia diagnosis in primary care as well as the extent to which dementia is underdiagnosed in primary but also specialist care in different population subgroups.

Furthermore, we aim to explore co-morbidity at the time of dementia diagnosis across the population and whether older individuals’ health is related to specified dementia diagnoses.Our project aims to examine to which extent people with dementia and their relatives have similar views on dementia care as care providers, specifically general practitioners, nurses, and home care staff.

We will describe care trajectories for people with a diagnosis of dementia and how they vary across population groups. We know that family members play an important role in the care of older people.

Therefore, we aim to highlight older people without close relatives and examine to which extent formal care for older people succeeds in compensating for the potential lack of informal support.The project is based on a large register database with national coverage for specialist care, and regional coverage for primary care.

This is complemented by focus group discussions with healthcare providers, and individual interviews with people with dementia and their relatives.

The research team includes a general practitioner, nurses, ageing epidemiologists, behavioral scientists and qualitative researchers.