Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-23T19:07:03.045Z Has data issue: false hasContentIssue false
  • English
  • Français

Dementia in rural settings: examining the experiences of former partners in care

Published online by Cambridge University Press:  11 September 2017

RACHEL V. HERRON  and
MARK W. ROSENBERG
RACHEL V. HERRON*
Affiliation:
Department of Geography, Brandon University, Canada.
MARK W. ROSENBERG
Affiliation:
Department of Geography and Planning, Queen's University, Kingston, Canada.
*
Address for correspondence: Rachel Herron, Department of Geography, Brandon University, 270 18th Street, Brandon, MB, CanadaR7A 6A9 E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Informal carers, also referred to as partners in care, provide the bulk of care to people living with dementia across a range of community settings; however, the changing experiences and contexts of providing informal care for people with dementia in rural settings are under-studied. Drawing on 27 semi-structured interviews with former partners in care in Southwestern and Northern Ontario, Canada, we examine experiences of providing and accessing care over the course of the condition and across various settings. Our findings illustrate the challenges associated with navigating the system of care, finding people who understand dementia in the surrounding community, negotiating hours of home support, facing resistance to respite from the person with dementia, and feeling pressured into long-term care. We argue that partners' time, bodies and choices are spatially constrained within rural and small-town settings and the current systems of home, community and long-term care.

Keywords

dementiaruralcaresettingstransitionsqualitativeCanada
Type
Article
Information
Ageing & Society , Volume 39 , Issue 2 , February 2019 , pp. 340 - 357
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S. and Lachs, M. S. 2014. Caregiver burden: a clinical review. JAMA: The Journal of the American Medical Association, 311, 10, 1052–60.Google Scholar
Andrews, G., Evans, J. and Wiles, J. L. 2013. Re-spacing and re-placing gerontology: relationality and affect. Ageing & Society, 33, 8, 1339–73.Google Scholar
Andrews, G. J. and Grenier, J. M. 2015. Ageing movement as space-time: introducing nonrepresentational theory to the geography of ageing. Progress in Geography, 34, 12, 1512–34.Google Scholar
Atkinson, S., Lawson, V. and Wiles, J. 2011. Care of the body: spaces of practice. Social & Cultural Geography, 12, 6, 563–72.Google Scholar
Baxter, J. 2016. Case studies in qualitative research. In Hay, I. (ed.), Qualitative Research Methods in Human Geography. Fourth edition, Oxford University Press, Toronto, 130–46.Google Scholar
Blackstock, K. L., Innes, A., Cox, S., Smith, A. and Mason, A. 2006. Living with dementia in rural and remote Scotland: diverse experiences of people with dementia and their carers. Journal of Rural Studies, 22, 2, 161–76.Google Scholar
Bowlby, S. 2012. Recognising the time–space dimensions of care: caringscapes and carescapes. Environment and Planning A, 44, 9, 2101–18.Google Scholar
Branger, C., Burton, R., O'Connell, M. E., Stewart, N. and Morgan, D. 2014. Coping with cognitive impairment and dementia: rural caregivers’ perspectives. Dementia, 15, 4, 814–31.Google Scholar
Charmaz, K. 2014. Constructing Grounded Theory. Sage, Thousand Oaks, California.Google Scholar
Cummins, S., Curtis, S., Diez-Roux, A. V. and Macintyre, S. 2007. Understanding and representing ‘place’ in health research: a relational approach. Social Science and Medicine, 65, 9, 1825–38.Google Scholar
Dal Bello-Haasm, V., Cammer, A., Morgan, D., Stewart, N. and Kosteniuk, J. 2014. Rural and remote dementia care challenges and needs: perspectives of formal and informal care providers residing in Saskatchewan, Canada. Rural and Remote Health, 14, 2747.Google Scholar
Dupuis, S. L., Wiersma, E. and Loiselle, L. 2012. Pathologizing behavior: Meanings of behaviors in dementia Care. Journal of Aging Studies, 26, 2, 162–173.Google Scholar
Egdell, V., Bond, J., Brittain, K. and Jarvis, H. 2010. Disparate routes through support: negotiating the sites, stages and support of informal dementia care. Health and Place, 16, 1, 101–7.Google Scholar
Forbes, D. A., Finkelstein, S., Blake, C. M., Gibson, M., Morgan, D. G., Markle-Reid, M., Culum, I. and Thiessen, E. 2012. Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: an interpretive descriptive study. Rural and Remote Health, 12, 4, 2201.Google Scholar
Forbes, D. A., Morgan, D. and Janzen, B. L. 2006. Rural and urban Canadians with dementia: use of health care services. Canadian Journal on Aging, 25, 3, 321–30.Google Scholar
Herron, R. V. and Rosenberg, M. W. 2017. Responding to aggression and reactive behaviours in the home. Dementia. Published online, 26 March, 2017, doi:10.1177/1471301217699676.Google Scholar
Herron, R. V., Rosenberg, M. W. and Skinner, M. W. 2016. The dynamics of voluntarism in rural dementia care. Health and Place, 41, 31–41.Google Scholar
Herron, R. V. and Skinner, M. W. 2013 a. Using care ethics to enhance qualitative research on rural aging and care. Qualitative Health Research, 23, 12, 1697–707.Google Scholar
Herron, R. V. and Skinner, M. W. 2013 b. The emotional overlay: negotiating aging and care in the countryside. Social Science and Medicine, 91, 12, 186–93.Google Scholar
Lilly, M. B., Robinson, C. A., Holtzman, S. and Bottorff, J. L. 2012. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health and Social Care in the Community, 20, 1, 103–12.Google Scholar
Morgan, D. G., Semchuk, K. M., Stewart, N. J. and D'Arcy, C. 2002. Rural families caring for a relative with dementia: barriers to use of formal services. Social Science and Medicine, 55, 2, 1129–42.Google Scholar
Morse, J. M. 2011. What is qualitative health research? In Denzin, N. K. and Lincoln, Y. S. (eds), The Sage Handbook of Qualitative Research. Sage, London, 401–14.Google Scholar
Milligan, C. 2005. From home to ‘home’: situating emotions within the caregiving experience. Environment and Planning A, 37, 12, 2105–20.Google Scholar
Milligan, C. and Power, A. 2010. The changing geography of care. In Brown, T., McLafferty, S. and Moon, G. (eds), A Companion to Health and Medical Geography. Blackwell, Malden, Massachusetts, 567–86.Google Scholar
Skinner, M. W., Yantzi, N. M. and Rosenberg, M. W. 2009. Neither rain nor hail nor sleet nor snow: provider perspectives on the challenges of weather for home and community care. Social Science and Medicine, 68, 4, 682–88.Google Scholar
Wiersma, E. C. and Denton, A. 2013. From social network to safety net: dementia-friendly communities in rural northern Ontario. Dementia, 15, 1, 51–68.Google Scholar
Wiles, J. 2003. Daily geographies of caregivers: mobility, routine, scale. Social Science and Medicine, 57, 7, 1307–25.Google Scholar
Wiles, J. 2005. Conceptualizing place in the care of older people: the contributions of geographical gerontology. Journal of Clinical Nursing, 14, s2, 100–8.Google Scholar
World Health Organization 2015. Dementia Fact Sheet. Available online at http://www.who.int/mediacentre/factsheets/fs362/en/ [Accessed May 2017].Google Scholar