Bringing palliative care for dementia 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.

The objectives of this patient-centered, personalized intervention are to
increase the satisfaction with care of patients with dementia, decrease
caregivers* burden and increase quality of life. We also hope to decrease
under- and overtreatment, hospitalizations and unplanned visits and reduce
costs.

The effects of Decidem will be studied in a cluster-randomized trial with six
months follow-up. Thirty dyads of GPs
and PCNs will be invited to participate. Each dyad will be invited to include
five dementia patients and their family caregivers. After patient selection, 15
GP/nurse dyads will be randomly allocated to the intervention group and the
other 15 to the control group using study wise minimization. Intervention group
dyads will be exposed to the intervention. Control group dyads receive no
training or other support (usual care).

Primary healthcare professionals will be trained in using shared decision
making and advance care planning according to a structured protocol and with
the use of ZWIP (an existing ICT tool for the use of ACP en SDM in primary
healthcare). The dementia patients and their caregivers in the intervention
group will receive care according to this protocol. The dementia patients and
their caregivers in the control group will receive care as usual.

In order to explore the barriers and facilitators and discover additional
factors which will influence the implementation and use of advance care
planning and shared decision making by the healthcare professionals, two types
of interviews will be conducted. Focus group interviews will be used for
retrieving information from the healthcare professionals. Patients with
dementia and their caregivers will be interviewed in the comfort of their own
homes.
The focus group interviews will take about 2 hours and, except from the
invested time, will not be associated with any burden or risks. The interviews
with patients with dementia and their caregivers will take about one hour and
apart from the invested time may cost some burden because of the issues (their
experiences with their disease and the care they received) which are going to
be discussed.
The healthcare professionals who are in the intervention group will have to
attend two meetings in order to be trained in using the intervention protocol.
They will also have to complete the Satisfaction with dementia care: visual
analogue scale, the easycareTOS (an instrument for geriatric assessment and
frailty identification in primary care), the Clinical dementia rating scale,
the Recource Utlity in Dementia (RUD) and the EQ-6D. Of course they will also
have to use the intervention protocol when treating the dementia patients which
will contain at least to meetings with the patient and their primarycariver in
order to discuss their future healthcare goals..
The healthcare professionals in the control group will have to complete the
satisfaction with dementia care: visual analogue scale. The easycareTOS
questionnaire, the Clinical dementia rating scale, the EQ-6D and the Recourse
Utility in Dementia care (RUD).
All patients in the control and intervention group will have to complete the
quality of life and depression: DEMQOL, the Satisfaction with care
questionnaire and the IMTA MCQ. They will also be asked to complete the EQ-6D
questionnaire and the Clinical Dementia rating Scale. Their caregivers will be
asked to complete the Burden: sense of competence questionnaire and the
Satisfaction with care: Short assessment of patient satisfaction, The IMTA MCQ
and the Clinical Dementia Rating Scale. The patients and the primary caregivers
in the intervention group are invited to attend two meetings with their GP or
primary care nurse for a discussing their future healthcare goals. The patients
in the control group receive care as usual.
There are no risks involved for the participating patients in this study.