Hospitalised people with dementia should be more involved in decisions about their long-term care

The vital research work which aims to improve the care for people living with dementia, has been highlighted by one of the key funders of health research in the country - the National Institute of Health Research (NIHR).

The study has been looking at how best hospitals can involve people living with dementia in decisions about their long-term care arrangements. It found that people with dementia who are in hospital are often not involved in the conversations about their future care, and frequently have their wishes overlooked, even when they are able to explain their thoughts.

During the study, researchers spoke to people with dementia who had been admitted to hospital, their families and staff. It found that the quality and degree of communication between these groups varied and there were often conflicting ideas about the care needs of the person with dementia.

Researchers found there were several ways to better meet the needs and wishes of people with dementia and their families. Better assessments of whether someone can understand information and use it to make a decision are essential. People with dementia and their families should be involved early and consistently in sharing information and making decisions about future care arrangements. Hospital staff need more support to help put these strategies into practice.

Putting these simple changes into place could mean people with dementia being able to leave hospital earlier with care arrangements that are more acceptable to them and their families.

Dr Rachael Kelley, Research Fellow in the Centre for Dementia Research and author of the paper said: “We are delighted that the NIHR has picked up on these important findings and has chosen to highlight them on their website and share them with organisations who can use them to inform improvements in shared decision making for people with dementia when they are in hospital.

“The findings are important because the decisions made in hospital can lead to life-altering events such as where the person will live when they are discharged or how much support they are likely to need. Little is known about how people with dementia are involved in making decisions about their care in hospital and there is very little previous research on the topic. This study took an in-depth looks at how the care needs of people are understood by the individual, by their family, and by hospital staff and looked at how these different perspectives shape the decision-making.”

The research team worked with colleagues from the University of Leeds.