Short summary

Having dementia affects cognitive and physical functioning, which interferes with a person's ability to live a purposeful daily life. The aim of this project is to learn what constitutes living well with dementia from the perspectives of both people with dementia and their family carers from the time of diagnosis and the following 12 months. The study is a longitudinal cohort study that investigates the association between important factors of daily life and health and well-being.

Rationale

The aim of this project is to learn what constitutes living well with dementia from the perspectives of both people with dementia and their family carers from the time of diagnosis and the following year. Learning from their experiences may inform future supportive interventions in the early progression of dementia with the purpose of enabling living well with dementia.

Initiating prevention, treatment and supportive care in the early stages may increase physical, mental, and social health among both people with dementia and their family carers. Additionally, early interventions may increase the possibilities for the person with dementia to be supported in continuing living life as usual at home and relieve caregiver burden of family carers.

The project consists of a longitudinal cohort study of people with dementia and family carers to investigate their health and well-being, and also, a nested interview study to explore what people with dementia and their family carers do for themselves in the early progression of dementia to maintain their health and well-being if they have turned down formal supportive interventions.

Description of the cohort

People with dementia and their informal family carers will be recruited from the Dementia clinic at Region Hospital Gødstrup.

Data and biological material

questionnaire data

Collaborating researchers and departments

Health Sciences Research Center, UCL University College Denmark

• Trine Holt Clemmensen
• Annemarie Ginnerup Toubøl
• Hanne Kaae Kristensen

Neurological department, Region Hospital Gødstrup

• Laila Mohrsen Busted
• Morten Stilund