The "more at home with dementia" program: A randomized controlled study protocol to determine how caregiver training affects the well-being of patients and caregivers

Abstract

Background: Caring for people with dementia imposes heavy burdens on caregivers, especially spouses. This can lead to depression, anxiety, and physical symptoms in the caregiver, with early institutionalization for the patient. An Australian study reported that a residential caregiver training program delivered in medical settings could delay nursing home admission, lower mortality, reduce psychological morbidity in caregivers, and lower healthcare costs. In this replication study, we aim to determine the effectiveness of an adaptation of this program to non-medical settings in the Dutch health care system. Methods: A randomized controlled study design will be used, comparing an intervention group with a control group. The intervention will last for five days and will be delivered in either a holiday park or a bed and breakfast setting. The control group will receive care as usual. Data will be collected at baseline and after 3 and 6 months, and outcomes will be assessed in the caregiver group and in the dementia group. The primary outcome will be caregiver-related quality of life after 3 months. The main secondary outcome will be the neuropsychiatric symptoms in the dementia group. Secondary outcomes in the dementia group will be activities of daily living and instrumental activities of daily living, use of health facilities, quality of life, agitation, dementia severity, and use of psychotropic medication. Secondary outcomes in the caregiver group will be the subjective and objective burdens, health and health care facility use, psychotropic medication use, depression, anxiety, and perseverance time. Discussion: We anticipate that the outcomes will allow us to confirm the effectiveness of the intervention, and in turn, potentially inform the introduction of this program into care plans. It is also expected that the experiences and recommendations of participants will help us to develop the training program further. Trial registration: Registered in the Netherlands Trial Register on March 9, 2016, number 5775.