Bringing palliative care for dementia patients into agreement with their wishes and needs: development and evaluation of
Decidem

Patients with dementia have limited access to palliative care. At the end of their lives, aggressive and unwanted
interventions like resuscitation and hospitalization regularly take place. Physical symptoms in patients such as pain or dyspnea
and neuropsychiatric symptoms and depression in both patients and family caregivers are often undertreated. This threatens
the quality of life of dementia patients and their family caregivers. Palliative care can bring actual care into agreement with
patients’ and caregivers’ needs and wishes. Therefore an innovative intervention in dementia care combining the strengths of
advance care planning (ACP) and shared decision making (SDM) called Decidem will be developed. The research aim of this
project is to evaluate its effects on care, patients and caregivers, and costs. We hypothesize that Decidem will bring actual care
into agreement with patients’ and caregivers’ wishes/preferences and needs. This patient-centered, personalized intervention
may increase their satisfaction with care, decrease caregivers’ burden and increase quality of life. Decrease of under- and over
treatment, of hospitalizations and of unplanned visits may reduce costs.

What are the effects of Decidem on the proportion of patients whose needs and wishes are known and respected, on patient
and family caregiver outcomes and on healthcare costs?

baseline meassurments at timepoint 0

Followup meassurments after three months for resource utilazation

End messurments after 6 months

Education of the general practitioner (and practice nurse) in advance care planning and shared decision making for community dwelling elderly who live at home or in a home for the elderly