Skip to main content Accessibility help

From Beginning to End: Perspectives of the Dementia Journey in Northern Ontario*

  • Deanna Di Gregorio (a1), Shannon Ferguson (a2) and Elaine Wiersma (a2)


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.

La recherche sur les soins de la démence continue à se développer, mais peu d'attention est accordée à l'expérience de la démence dans les lieux ruraux et nordiques. Cette étude explore la démence à travers les points de vue des services de santé, les soignants, les membres de la communauté, et les personnes atteintes de démence. Les résultats mettent en évidence la complexité de la prise de conscience et la compréhension de ce phénomène dans des lieux ruraux. La perspective des gens vivants avec une démence, la compréhension des services disponibles et une prise de conscience communautaire, sont essentiels à la prise en charge rural. La nécessité d'accroître les connaissances et l’emphase sur le développement des services de santé et bien-être en milieux ruraux sont discutée.


Corresponding author

La correspondance et les demandes de tirés-à-part doivent être adressées à : / Correspondence and requests for offprints should be sent to: Elaine Wiersma, Ph.D. Department of Health Sciences Lakehead University 955 Oliver Road Thunder Bay (ON) P7B 5E1 (


Hide All

This research was supported by a grant received from the Alzheimer Society of Canada Research Program.



Hide All
Alzheimer Society of Thunder Bay. (2013). Awareness: Let’s talk about dementia. Retrieved 6 June 2013 from
Alzheimer Society of Canada. (2010). Rising tide: The impact of dementia on Canadian society . Retrieved 27 March 2013 from∼/media/Files/national/Advocacy/ASC_Rising%20Tide-Executive%20Summary_Eng.ashx.
Andrews, M. E., Morgan, D. G., & Stewart, N. J. (2010). Dementia awareness in northern nursing practice. Canadian Journal of Nursing Research, 42(1), 5673.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks, CA: Sage.
Coward, R., Cutler, S., & Mullens, R. (1990). Residential differences in the composition of helping networks of impaired elders. Family Relations, 39, 4450.
Coward, R., Netzer, J., & Peek, C. (1996). Obstacles to providing high-quality long-term care services for rural elders. In Rowles, D., Beaulieu, J., & Myers, W. (Eds.), Long-term care for the rural elderly: New direction in services, research, and policy (pp. 1034). New York, NY: Springer.
Cummins, S., Curtis, S., Diez-Roux, A., & Macintyre, S. (2007). Understanding and representing ‘place’ in health research: A relational approach. Social Science & Medicine, 65(9), 18251838.
Dandy, K., & Bollman, D. (2008). Seniors in rural Canada. Rural and Small Town Canada Analysis Bulletin, 7(8). Retrieved 13 March 2013 from
Dobbs, B., & Strain, L. (2008). Staying connected: Issues of mobility of older rural adults. In Keating, N. (Ed.), Rural Ageing: A good place to grow old? (pp. 8795). Bristol, UK: Policy Press.
Edelman, P., Kuhn, D., Fulton, B., & Kyrouac, G. (2006). Information and service needs of persons with Alzheimer’s Disease and their family caregivers living in rural communities. American Journal of Alzheimer’s Disease & Other Dementias, 21(4), 226233.
Forbes, D., & Hawranik, P. (2012). Looming dementia care crisis: Are Canadian rural and remote settings ready? In Kulig, J., & Williams, A. (Eds.), Health in Rural Canada (pp. 447461). Vancouver, BC: UBC Press.
Forbes, D., Morgan, D., & Janzen, B. (2006). Rural and urban Canadians with dementia: Use of health care services. Canadian Journal of Aging, 25(23), 321330.
Halseth, G., & Williams, A. (1999). Guthrie House: A rural community organizing for wellness. Health & Place, 5(1), 2744.
Hanlon, N., & Halseth, G. (2005). The greying of resource communities in northern British Columbia: Implications for health care delivery in already-underserviced communities. The Canadian Geographer, 49(1), 124.
Innes, A., Blackstock, K., Mason, A., Smith, A., & Cox, S. (2005). Dementia care provision in rural Scotland: Service users’ and carers’ experiences. Health and Social Care in the Community, 13(4), 354365.
Innes, A., Morgan, D., & Kosteniuk, J. (2011). Dementia care in rural and remote settings: A systematic review of informal/family caregiving. Maturitas, 68(1), 3446.
Jansen, L., Markle-Reid, M., Hawranik, P., Kingston, D., Peacock, S., Henderson, S., et al. (2009). Formal care providers’ perceptions of home- and community-based services: Informing dementia care quality. Home Health Care Services Quarterly, 28, 123.
Joseph, A. E., & Cloutier-Fisher, D. (2005). Ageing in rural communities: Vulnerable people in vulnerable places. In Andrews, G. J. & Phillips, D. R. (Eds.), Ageing and place: Perspectives, policy, practice (pp. 133146). London, UK: Routledge.
Joseph, A., & Hallman, B. (1998). Over the hill and far away: Distance as a barrier to the provision of assistance to elderly relatives. Social Science & Medicine, 46(6), 631639.
Keating, N. (2008). Rural Ageing: A good place to grow old? Bristol, UK: Policy Press.
Koller, D., Eisele, M., Kaduszkiewicz, H., Schon, G., Steinman, S., Wiese, B., et al. (2010). Ambulatory health services utilization in patients with dementia – Is there a rural-urban difference? International Journal of Health Geographics, 9(59), 18.
Krout, J. (1994). An overview of older rural populations and community-based services. In Krout, J. (Ed.), Providing community-based services to the rural elderly (pp. 318). Thousand Oaks, CA: Sage.
Lincoln, Y. S., & Guba, E. G. (2000). Paradigmatic controversies, contradictions, and emerging confluences. In Denzin, N. K. L., , Y.S. (Ed.), The handbook of qualitative research (pp. 163188). Thousand Oaks, CA: Sage.
Magilvy, J. (1996). The role of rural home- and community-based services. In Rowles, G., Beaulieu, J., & Myers, W. (Eds.), Long-term care for the rural elderly (pp. 6484). New York, NY: Springer.
McDonald, A., & Heath, B. (2008). Developing services for people with dementia. Quality of Ageing, 9(4), 918.
Morgan, D., Semchuk, M., Stewart, N., & D’Arcy, C. (2002). Rural families caring for a relative with dementia: Barriers to use of formal services. Social Science & Medicine, 55, 11291142.
Morgan, D., Innes, A., Kosteniuk, J. (2011). Dementia care in rural and remote settings: A systematic review of formal paid care. Maturitas, 68, 1733.
Ontario Ministry of Health and Long Term Care (2011). Rural and northern health care report. Retrieved 27 April 2013, from
Saldana, J. (2009). The coding manual for qualitative researchers. Thousand Oaks, CA: Sage.
Schwandt, T. (2001). Dictionary of qualitative inquiry (2nd ed.), Thousand Oaks, CA: Sage Publications.
Sims-Gould, J., & Martin-Matthews, A. (2008). Distance, privacy and independence: Rural home care. In Keating, N.. (Ed.), A Good Place to Grow Old? Critical Perspectives on Rural Aging (pp. 4351). Bristol, UK: Policy Press.
Statistics Canada (2001) Rural and Small Town Canada Analysis Bulletin. Vol. 3, No. 3. (November)
Stoller, E., & Pugliesi, K. (1988). Informal networks of community based elderly: Changes in composition over time. Research on Aging, 10, 499516.
Szymczynska, P., Innes, A., Mason, A., & Stark, C. (2011). A review of diagnostic process and postdiagnostic support for people with dementia in rural areas. Journal of Primary Care & Community Health, 2(4), 262276.
Wenger, G., & Keating, N. (2008). The evolution of networks of rural older adults. In Keating, N. (Ed.), Rural Ageing A good place to grow old? (p. 34). Bristol, UK: Policy Press.
Wenger, G., Scott, A., & Seddon, D. (2002) The experience of caring for older people with dementia in a rural area: using services. Aging & Mental Health 6(1): 30–8.
Wiersma, E. C. & Denton, A. (2013). From social network to safety net: Dementia friendly communities in rural northern Ontario. Dementia.doi:10.1177/1471301213516118. ePub ahead of print.
Williams, A. (1996). The development of Ontario’s home care program: A critical geographical analysis. Social Science and Medicine, 42, 937948.
Williams, A., & Cutchin, M. (2002). The rural context of health care provision. Journal of Interprofessional Care, 16(2), 107–15.
Wilcox, J., Jones, B., & Alldrick, D. (1995). Identifying the support needs of people with dementia and older people with mental illness on a joint community team: A preliminary report. Journal of Mental Health, 4, 157163.
World Health Organization. (2012). Dementia: A public health priority. Retrieved 16 March 2013 from


Related content

Powered by UNSILO

From Beginning to End: Perspectives of the Dementia Journey in Northern Ontario*

  • Deanna Di Gregorio (a1), Shannon Ferguson (a2) and Elaine Wiersma (a2)


Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed.