HOMeCare: Caring for the Dementia Caregiver and their Loved One via the HOMeCare Exercise and Mindfulness for Health Program

Dyads will be randomised after baseline assessment, stratified by level of SPPB (<8; 8-10) by an offsite statistician and concealed until allocation by interventionist. The experimental program consists of an adaptation of an 8-wk Mindfulness Training Program for the caregiver followed by a 8-wk home-based balance and strength training program for the participant with dementia, during which time the Mindfulness practice will continue to be reinforced and monitored. All experimental dyads will have a home visit by the interventionist after the baseline assessment is complete, at which time they will receive an iPad, and detailed in-person instruction in use of the iPad for viewing the instructional materials, downloading videos and written materials, and Face Time videoconferencing. The materials will all be accessible via a single HOMeCARE website which has been purpose-built for this study, with the needs of the older adults caregiver specifically in mind. All software and hardware and Internet data packages needed for the delivery and monitoring of the intervention components will be supplied to the participants at no cost for the duration of the trial. Mindfulness Training for the Caregiver: The Mindfulness training course will utilise the internet-based Palouse Mindfulness Based Stress Reduction (MBSR) course materials and home practice program. This online MBSR training course has been modelled on the program founded by Jon Kabat-Zinn in 1979 at the University of Massachusetts Medical School. The 8-week program comprises of recorded video lectures on the topic of Mindfulness, practice tips, guided audio recordings for daily practice, and publications on mindfulness including media coverage. We encourage participants to allocate between 30 minutes – 1 hour daily session for formal mindfulness practice. Throughout the mindfulness program, participants are encouraged to log in their experiences. Formal practice forms are used to record their feelings during the guided practice sessions, while informal practice forms are used to reflect and record how mindfulness was applied during their daily activities. Caregivers will be asked to log their daily Mindfulness practice into the HOMeCARE website on their iPads, and these logs will be set for automatic uploading to the study interventionist so that adoption and adherence are optimized and relapse prevented Due to the specific and significant stressors imposed by dementia caregiving, the basic Palouse course will be supplemented by targeted materials developed for the unique stresses experienced by dementia caregivers by the investigators of this project. The supplementary materials form the additional 4-week mindfulness program for the caregiver which runs concurrently with the 8-week exercise program. The supplemented materials are sourced from the Palouse website and comprises of optional reading materials outside the formal 8-week program. Additional materials were sourced from dementia care and caregiver organizations with their consent. These include resources from the Presence Care Project and the Aged Care Channel (ACC). Resources included media publications, reflections, video interviews, and caregiving tips for dementia. All materials will be delivered through the dedicated HOMeCARE website on their iPads. We will augment the internet course with Face Time interaction with a trained Palouse Mindfulness Based Stress Reduction (MBSR) facilitator on a weekly basis during the full study period. Estimated duration of the face time sessions will be set to one hour however this may vary on a case by case basis. The session includes an opportunity for the caregiver to discuss the person with dementia’s progress with the exercise once commenced, tips on coaching and training the person with dementia, the caregiver’s own progress with the mindfulness materials, and an opportunity to report any adverse events during the week. The facetime session will also allow the interventionist to modify exercise programs for the person with dementia as appropriate. Exercise program for the person with Dementia: The study investigators will be training the caregivers to deliver the HOMeCARE exercise program to their loved ones once they have finished 4 weeks of their 8-week Mindfulness course. Free weights and resistance bands will be provided as well as online pictures and instructional booklets, which can be downloaded along with video demonstrations of all exercises through the dedicated study website. The exercise will involve 3 sessions per week of progressive moderate-to-high intensity resistance training for 8 major muscle groups of whole body, as well as progressively challenging static and dynamic balance training exercises suitable to their current level of stability. The exercises may be broken up into sessions as short as 1 minute over the course of the day, and to enhance feasibility, integration into daily activities will be encouraged. For example, while watching TV, leg lifts and chair stands may be inserted during commercial breaks, and progressively increased in difficulty. One-legged stands can be practiced while standing in front of kitchen and bathroom counters during hygiene and meal preparation activities. Caregivers will be encouraged to perform the movements with their loved one, so that mimicking movements is all that is needed. One session per week will be viewed in real time by the remote trainer using Face Time on the iPad to allow direct feedback on form, triage questions, and provide health coaching. Daily exercise activities will also be logged on the HOMeCARE website on the iPad by the caregiver, which will have been programmed for automatic upload to the trainer.