Identifying dementia care needs of family physicians, people living with dementia, and care partners in Canada: Results of a national survey

Abstract

AbstractBackgroundThere is consensus that timely detection, diagnosis and ongoing care of people with dementia is primarily the responsibility of family physicians in Canada. Yet evidence indicates low to moderate diagnosis rates and significant challenges in management of dementia. With the growing number of Canadians living with dementia, there is an increasing need to develop effective practice tools for family physicians and to understand the needs of people living with dementia and their caregivers. This nationwide study was conducted to identify the gaps in tools currently being used, and to identify the domains of care that people with lived experience of dementia and their caregivers feel are being done well, and those that require improvement by their family physician.MethodThree nationwide surveys were distributed to target audiences: the 39‐item Dementia Care Needs Assessment Survey for family physicians, the 35‐item Dementia Journey Survey: Caregiver Experience for caregivers, and the 33‐item Dementia Journey Survey: Living with Dementia Experience for persons living with dementia. Survey questions were both multiple choice and open‐ended. Descriptive analyses were conducted on closed‐ended survey questions. Qualitative analyses of open‐ended questions were both inductive, based on observed patterns, and deductive, based on the study objectives.ResultThe surveys received 288 physician, 78 people with dementia, and 485 care partner responses. Preliminary analysis indicates consensus between physicians, people with dementia, and care partners on 15 of 22 barriers to diagnosis and care. Barriers highlighted included gaps in education and support, community resources, and access to specialists, as well as the need for improved communication around care and diagnosis. A further 4 themes were highlighted by physicians and 3 themes by people with dementia that did not overlap, indicating divergent needs. 24.7% of physicians reported using practice tools for dementia care, 10% of whom use only 1 tool for all aspects.ConclusionOptimal primary care is a cornerstone of a comprehensive approach to supporting people with dementia and their care partners. Identifying gaps in knowledge and tools to support practice and developing new educational programs that are aligned with the needs of people with dementia are vital to improve primary dementia care.