Care beyond medicines - a systematic approach for high quality palliative care through the journey of dementia

Aim: We want to explore ways to improve clinical care for older people with dementia.

We will focus on the Swedish Palliative Care Guide, a method for a person-centered, yet structured, approach to palliative care.

The Care Guide puts existing knowledge into practice, particularly in care settings where palliative care is not the primary focus.

Additionally, we want to investigate two clinical decision points that might impact the use of the Care Guide: time between diagnosis and death and access to specialist palliative care.

Finally, together with patients, family and staff we will explore ways to improve quality of palliative care for people living with dementia.Data and methods: The project have six parts; first we investigate the Care Guide: in study 1, a national register-linkage study, we investigate if the care at the end of life improves when using the Care Guide.

In study 2 we evaluate if the Care Guide used in memory clinics improves the detection of palliative care needs and access to palliative care for those who need it.

In study 3 we examine the effect on the family when the Care Guide is introduced in dementia nursing homes, testing if the family feels more secure after clear communication about the future care.

In addition, in register studies, we evaluate time between diagnosis of dementia and death (study 4), and access to palliative care (study 5) and its impact on quality of end-of-life care, and on the well-being of the family after the death.

Lastly, in a focus group study we explore into new measures of quality of care, both for research and clinic.Relevance and use: Dementia is a fatal, common disease with increasing prevalence, measures that can improve the end of life for these people are needed.

This project evaluates a method, the Swedish Palliative Care Guide, that can be implemented now, and can have a rapid and meaningful impact.

Insights into the effect of late diagnosis and poor access to specialist palliative care are also important, as are that future quality indicators are deemed important by the patient and family.Implementation: The research group has deep expertise in register research and research within vulnerable groups.

The register studies are carried out nationally to obtain the best generalizability.

The intervention studies will be multi-center, in both Skåne and Stockholm, where the research group has long experience in clinical research. The costs in the project is mainly for researchers´ personnel costs.