Supporting care home staff to engage in decision-making with family carers: scaling up an educational intervention

Making decisions about care

When a person with dementia that is living in a nursing home* loses the capacity to make a decision for him/ herself, nursing home staff must deliver care that is in the person’s best interest. There is evidence that families often experience uncertainty about the illness progression, especially when they are not given an opportunity to discuss their relative’s prognosis and fundamental aspects of their care.

An educational intervention called the Family Carer Decision Support (FCDS) intervention has been developed to assist nursing home staff in supporting family carers when they need to make difficult decisions about end-of-life care for their relative with advanced dementia. The FCDS intervention is the focus of mySupport study, a transnational multidisciplinary implementation study.

*In this study, ‘nursing home’ is used to refer to a collective institutional setting in which care is provided to older adults, on-site 24 hours a day, including on-site or off-site nurses and medical staff.

Family Carer Decision Support (FCDS)

In previous research, the Family Carer Decision Support (FCDS) intervention was found to reduce family carer decision-making uncertainty on establishing goals of care at the end of life and improve family carer satisfaction on fundamental choices for comfort and quality of care.

There are three core elements to the FCDS intervention:
1. Provision of a Comfort Care Booklet to family carers.
2. Training of nursing home staff.
3. Delivery of a Family Care Conference.