Gaps in the System: Supporting People Living with Dementia

Abstract

Persons living with dementia and their caregivers often face challenges in accessing support for their complex needs. This study aims to understand how program administrators, people living with dementia, unpaid caregivers, and decision-makers perceive specific dementia care programs and whether they are adequately meeting the needs of individuals living with dementia. Forty semi-structured interviews were conducted between 2018 and 2020 in five North American jurisdictions. Three main gaps were identified (1) disconnected system infrastructure, (2) lack of comprehensive services to meet diverse needs, and (3) inconsistent understandings of dementia. Despite having programs in place, there remain significant limitations in systems that could be addressed to adequately meet the needs of individuals living with dementia and their caregivers.