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Understanding how families support a person with dementia - the iCARE study

Elderly couple looking towards the camera

What we did and why we did it

Family carers are essential in supporting people with dementia living in their own homes or in care homes. Different challenges in providing care often lead to family carers having a poor quality of life (QoL). We wanted to understand how to best support carers to maintain their QoL while providing support to their family member living with dementia. Carers completed self-reported and interview-based questionnaires to explore the impact of some of the likely things that carers find stressful, for example, low mood, anxiety, hours devoted to caregiving, physical health conditions, sleep quality, psychological flexibility and care recipient’s neuropsychiatric symptoms.

Take away points

1. This project explored potential causes that could worsen the quality of life (QoL) of family carers of people with dementia.

2. 91 family carers with an average age of 69.5 took part in the study.

3. Carers’ anxiety, sleep quality and psychological flexibility seem to have a great impact on carer QoL

What we found

A total of 91 family carers from Norfolk & Suffolk, aged 18 or over, who were currently supporting a person with dementia volunteered to take part in the study. Carers’ average age was 69.5 years old, and they were primarily female family members looking after a person with severe Alzheimer's disease. Carers’ anxiety, sleep quality and psychological flexibility - the ability to do what's most important to you despite the presence of unpleasant thoughts and feelings - were the most important factors that have an influence on QoL.

What’s Next?

We hope the findings from this study will inform the development of new interventions that could help carers maintain their wellbeing across the entire journey of dementia care. Treating anxiety, improving sleep quality and promoting psychological flexibility seem to be critical to support the wellbeing of family carers of people with dementia.

Download the pdf here 177KB

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