Creating National Dementia Caregiver Profiles: A Pilot Study

Abstract

AbstractBackgroundThere will be an estimated 1 million people living with dementia (PLWD) in Canada in 2031, with a further 613,500 Canadians thrust into the role of caregiver to support them. These unpaid caregivers, who tend to be spouses or adult children, shoulder significant physical, mental, emotional, and financial burdens while caring for their loved ones. Yet there is almost no information available nationally on caregivers of people living with dementia and their needsMethodThe First Link® program by the Alzheimer Society offers tailored support and connection to caregivers reaching ∼200,000 clients nationally. Consistent quantitative data will be collected from 30,000 individuals across 5 pilot provinces. The pilot recruitment ensures representation and inclusivity of all communities served by the Society. A framework and data set were agreed to through a collaborative community of practice approach engaging provincial Societies, subject matter experts and PLWD. Data sharing agreements were established for automated, secure, de‐identified data transfers into a centralized data repository.ResultThe framework includes a common dataset with demographic (race, ethnicity, gender identity, sexual identity), health status, level of stress/caregiver burden, confidence/preparedness to deliver care, quality of life and connections to local supports. Through an individualized tailored approach, each pilot site receives training in consistent data collection processes as well as equity, diversity, inclusion and belonging sensitivity training. This approach allowed staggered onboarding while ensuring all front‐line staff are trained for longitudinal data collection with 100% uptake. The next step will be engagement to develop caregiver profiles that highlight demographic characteristics, insights into current supports, and priorities for future programming for this population, and allow for subgroup analysis that provides further information on the different sizes of each provincial site, as well as styles of First Link® delivery, healthcare connectedness, and geography.ConclusionOver time, this comprehensive dataset will provide insight into the effectiveness of caregiver resources that are currently being provided (e.g., public education, community support groups, crisis support), including ease of access for caregivers, and establish a Canada‐wide surveillance system for caregivers of PLWD