Effectiveness and Cost-effectiveness of an In-home Respite Care Program to Support Informal Caregivers of People With Dementia: a Comparative Study

The in-home respite intervention group will receive in-home respite care also called "Baluchonnage". During that period, lasting at least five days (24/24hours), an internally trained or experienced care worker for persons with dementia takes over all caregiving tasks while the caregiver takes a break. This care worker also writes down his/her observations in a diary. The content of this diary enables the caregiver to validate their perceptions, provides strategies to deal with difficult situations, and let them feel that somebody can truly understand their daily challenges. The control group receives usual care (standard dementia care).

Participants of the in-home respite intervention group will be recruited by Baluchon staff when asking for a first or a new period of in-home respite care. First, Baluchon staff will describe the study to the dyads and ask them about their preparedness to participate. When they give their verbal consent contact information will be forwarded to the research team who will then contact them by phone. During this call a home visit will be planned to sign the informed consent and complete the baseline assessment. Participants in the control group will be recruited from several general practitioners spread over the different regions in Belgium. Potentially, in a later phase, control group participants will also be recruited via Memory Clinics in Belgium.

Similar to the recruitment of the intervention group, the physician will give some information about the study. When verbal consent to participate is given to the physician, caregivers will be contacted by phone by the research team to check eligibility. This will be done by listing different support strategies (including "Baluchonnage") and ask the caregiver if they would be interested to receive this type of support. Also previous use of Baluchonnage will be questioned because this is not allowed in the control group. When caregivers appear to be eligible the research team will plan a home visit to sign the informed consent and complete the baseline assessment.

Data collection of caregiver and care-recipient characteristics and research outcomes will be gathered at several assessment moments. The baseline assessment will be conducted during a home visit by a member of the research team. Background characteristics and baseline values of the research outcomes will be gathered during this assessment. For the intervention group this will be in the week preceding the respite period. For the control group this will take place after inclusion. A second assessment will be done in the intervention group two weeks after having the intervention. A third assessment moment will be done 6 months after inclusion and a last follow up assessment will be conducted after 12 months. To fulfill the assessments after the baseline assessment, caregivers will be contacted by telephone. All questionnaires will be available in Dutch and French for use in Belgium. When no valid translation of a certain questionnaire exists in Dutch or French for Belgium a back-forward translation method will be performed.

For caregivers the researchers will obtain the following background characteristics: age, gender, region, marital status, ethnicity, educational level, relationship with the care-recipient, employment status, living situation and time spent in caregiving. In both study groups the reason for (potential) use of respite will be asked. Earlier use of Baluchonnage will also be questioned to intervention group participants. Time spent in caregiving (measured twice) will be calculated using the RUD instrument (Resource Utilization in Dementia). For the care-recipient the following background characteristics will be collected at baseline: age, gender, marital status, ethnicity, region, National Registration Number, educational level, being on a waiting list for long-term nursing home placement, dementia-specific medication use, and severity of dementia. The National Registration Number of the person with dementia will be gathered. This will allow us to trace study participants in the IMA database (Intermutualistisch Agentschap) and gather information on resource use and date of placement in a nursing home over a longer time period than the trial. ADL (Activities of Daily Living) functioning will be measured using the Belgian Katz scale and severity of dementia with the Global Deterioration Scale. Both will be measured twice (baseline and after 6 months).