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

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

Effects of caregiver dementia training incaregiver-patientdyads:A randomized controlled study

Objectives Caregivers for people with dementia (PWD) have reported needing emotional and social support, improved coping strategies, and better information about the illness and available support services. In this study, we aimed to determine the effectiveness of an Australian multicomponent community-based training program that we adapted and implemented in a non-medical Dutch health care setting. Methods and design A randomized controlled trial was performed: 142 dyads of cohabiting caregivers and PwD were randomized to control (care as usual) or intervention (training program) groups and outcomes were compared. Programs lasted 1 week, comprised 14 sessions, and were delivered by specialist staff. We included 16 groups of two to six caregivers. The primary outcome was care-related quality of life (CarerQol-7D) at 3 months. The main secondary outcomes for caregivers were self-rated burden, health and mood symptoms, and for PwD were neuropsychiatric symptoms, quality of life, and agitation. Results No significant difference was observed for the primary outcome. However, caregivers experienced fewer role limitations due to physical function (adjusted mean difference, 13.04; 95% confidence interval [95%CI], 3.15-22.93), emotional function (13.52; 95%CI, 3.76-23.28), and pain reduction (9.43; 95%CI, 1.00-17.86). Positive outcomes identified by qualitative analysis included better acceptance and coping and improved knowledge of dementia and available community services and facilities. Conclusion Quantitative analysis showed that the multicomponent course did not affect care-related quality of life but did have a positive effect on experienced role limitations and pain. Qualitative analysis showed that the course met the needs of participating dyads

Caregiver dementia training in caregiver-patient dyads: process evaluation of a randomized controlled study

Objectives We performed a randomized controlled study to evaluate the effects of caregiver training on the well-being of both people with dementia and their caregivers. Before the effect analysis, we conducted a process evaluation to estimate internal and external validity. This was anticipated to augment our understanding of the outcomes. Methods We focused on three questions. (a) Was the intervention performed as planned (internal validity)? (b) Can qualitative data be used to inform how the intervention evoked change? (c) Can the study outcomes be extrapolated to all caregivers living with people who have dementia (external validity)? Results Responses from participants assigned to the intervention group suggested that the intervention was feasible, could be performed as planned, and that modelling and discussions between participants were important. However, participant recruitment to the entire study was ultimately laborious because participants had issues with the study design (risk of being assigned to the control group) and referrers lacked familiarity with the training (new type of intervention). Participants were also younger and better educated compared with the general population. Some dropouts in the follow-up period occurred due to the number of questionnaires, and this was more pronounced in the control group. Conclusions Although we achieved high internal validity, we lack certainty about the external validity. We not only experienced general difficulty in recruiting participants but also tended to recruit a biased sample that was relatively young and well educated. These factors combine to limit our ability to extrapolate the results to the general population.Public Health and primary careGeriatrics in primary car

Cost‐effectiveness of dementia training for caregivers in caregiver‐patient dyads: A randomized controlled study

Abstract Introduction We evaluated the cost‐effectiveness of the “More at Home with Dementia” intervention, a multicomponent training program for co‐residing caregivers of people with dementia (PwDs). Methods We performed a two‐armed randomized controlled trial with an intervention and a control group. Participants were community‐dwelling caregivers living with a person with dementia (59 randomized to intervention and 50 to control arm). The training program lasted 5 days and took place in a holiday accommodation. Quality‐adjusted life‐years (QALYs) were calculated using the EuroQol‐5 Dimensions 3 Levels (EQ‐5D‐3L) for caregivers and PwDs. Costs for informal and formal social care, as well as health care, were collected at four times over a 6‐month period from baseline. Information on nursing home admission or death was collected for 2 years after baseline. Results QALYs for caregivers and PwDs added together were 0.12 higher in the intervention group compared with the control group (P = .11). After 1 year, there tended to be fewer nursing home admissions in the intervention group, but this difference was lost by 2 years (P = .19). The cost of the intervention was estimated at €1000 (USD 1090) per dyad. Compared with the control group, the intervention group used other health care and formal social care significantly less for a year after baseline (P = .02 and .001, respectively). The estimated decrease in total costs was €10,437 (P = .07), with an estimated 96% probability that the intervention was cost‐effective vs usual care. Discussion The multicomponent “More at Home with Dementia” training program is effective and appears to save costs compared with usual care. Savings appear to be achieved by delaying nursing home admissions and by reducing the use of other care resources. Further research is also needed to clarify if this intervention is effective for caregivers who do not live with a PwD, such as adult children, and for the caregivers of patients with other debilitating chronic diseases. At the same time, effort is advised to implement caregiver training in standard care programs