From beginning to end: perspectives of the dementia journey in northern Ontario
Abstract
Research on dementia care continues to develop, yet little attention has been given to the dementia experience in rural, northern communities. This study explored the dementia journey through the viewpoints of health service providers, caregivers, community members, and people living with dementia. The findings highlight the complexity of dementia awareness and understanding. Sound awareness and knowledge of dementia itself, the community services available, as well as of the perspectives of individuals living with dementia and care partners specifically in rural, northern Ontario are fundamental to quality care and support of individuals with dementia. Practical service implications and the need for greater developments with respect to the awareness and understanding of dementia in rural, northern communities are discussed.
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Simply increasing home care hours without investing in system and cultural change-embracing personhood, increasing PSW wages, and providing dementia-specific education and quality standards-will not result in better outcomes.
“Simply increasing home care hours without investing in a system and cultural change—embracing tenets of personhood, increasing PWS wages, and providing dementia-specific education and quality standards—will not result in better outcomes [16,43,44].”
From Towards defining quality in home care for persons living with dementia (2022) · cites this paper as [44]
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“, defining dementia, understanding dementia symptoms, understanding the needs of caregivers) was a challenge which precipitated negative emotions for caregivers [24,25,29,45,54].”
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“Specifically, the challenges include a lack of awareness of available services in care settings among health professionals and caregivers [10, 11] and an incomplete transfer of information among stakeholders due to miscommunications [12].”
BackgroundPrimary care clinicians’ knowledge, attitudes, and practices concerning dementia
Arsenault‐Lapierre, G., Henein, M., Rojas‐Rozo, L., Sourial, N., Bergman, H., Couturier, Y., & Vedel, I. (2021) · Canadian Family Physician · doi:10.46747/cfp.6710731 · Cited by 14 · see citing works
Towards defining quality in home care for persons living with dementia
Saragosa, M., Jeffs, L., Okrainec, K., & Kuluski, K. (2022) · PLOS ONE · doi:10.1371/journal.pone.0274269 · Cited by 10 · see citing works
“Simply increasing home care hours without investing in a system and cultural change—embracing tenets of personhood, increasing PWS wages, and providing dementia-specific education and quality standards—will not result in better outcomes [16,43,44].”
BackgroundKosteniuk, J. G., Osman, B. A., Osman, M., Quail, J. M., Islam, N., O’Connell, M. E., Kirk, A., Stewart, N. J., Karunanayake, C. P., & Morgan, D. (2024) · BMC Health Services Research · doi:10.1186/s12913-024-10817-3 · Cited by 7 · see citing works
“This may have a negative effect on care, as previous research shows that local relationships held by FPs facilitate dementia care [16] and awareness of patient supports among health care providers in small rural communities helps keep people with dementia in their own homes [44].”
ResultDreyer, J., Köhler, K., Hochgraeber, I., Holle, B., & von Kutzleben, M. (2018) · BMJ Open · doi:10.1136/bmjopen-2017-021156 · Cited by 7 · see citing works
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- Authors
- Gregorio, D. D., Ferguson, S., & Wiersma, E.
- Affiliations
- Lakehead University (CA)
- Corresponding author
- Wiersma, Elaine
- ORCID
- Wiersma, Elaine
- Venue
- Canadian Journal on Aging / La Revue canadienne du vieillissement
- Publisher
- Cambridge University Press (CUP)
- Published
- 2015-01-29
- Volume
- 34
- Issue
- 1
- Pages
- 100-112
- ISSN
- 0714-9808 (ISSN-L)
- 1710-1107
- OpenAlex
- W2153553785
- Cited by
- 15
- References
- 40
- Citations by year
- 2026: 1 · 2024: 2 · 2023: 3 · 2022: 1 · 2021: 2 · 2020: 2 · 2019: 2 · 2018: 1 · 2015: 1
- FWCI
- 0.54
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Canadian Journal on Aging / La Revue canadienne du vieillissement (publishedVersion)
- PubMed (publishedVersion)
- Project Muse (Johns Hopkins University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Health Professions › General Health Professions › Aging, Elder Care, and Social Issues
- Keywords
- dementia, dementia care, rural communities, Northern Ontario, lived experience of dementia, caregivers, healthcare workers, community service, dementia awareness, quality of care
- MeSH terms
- Workforce, Dementia, Female, Health Personnel, Health Services Accessibility, Humans, Health Knowledge, Attitudes, Practice, Long-Term Care, Male, Ontario, Rural Population, Social Support, Caregivers, Rural Health Services
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