Skip to main content Accessibility help
×
×
Home

Rural dementia carers: formal and informal sources of support

  • PETER ORPIN (a1), CHRISTINE STIRLING (a2), SHARON HETHERINGTON (a1) and ANDREW ROBINSON (a2)
Abstract

Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assuming primary responsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.

  • View HTML
    • Send article to Kindle

      To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      Rural dementia carers: formal and informal sources of support
      Available formats
      ×
      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      Rural dementia carers: formal and informal sources of support
      Available formats
      ×
      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      Rural dementia carers: formal and informal sources of support
      Available formats
      ×
Copyright
The online version of this article is published within an Open Access environment subject to the conditions of the Creative Commons Attribution-NonCommercial-ShareAlike licence . The written permission of Cambridge University Press must be obtained for commercial re-use.
Corresponding author
Address for correspondence: Peter Orpin, University Department of Rural Health, Private Bag 103, Hobart, Tasmania 7000, Australia. E-mail: Peter.Orpin@utas.edu.au
References
Hide All
Access Economics Pty Limited 2009. Making Choices. Future Dementia Care: Projections, Problems and Preferences. Alzheimer's Australia, Hawker, Australia.
Adams, K. B. 2007. Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses. International Psychogeriatrics, 20, 3, 508–20.
Alzheimer's Australia 2007. Support Needs of People Living with Dementia in Rural and Remote Australia. Alzheimer's Australia, Hawker, Australia.
Andren, S. and Elmstahl, S. 2008. The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia. Journal of Clinical Nursing, 17, 6, 790–9.
Australian Bureau of Statistics 2010. National Regional Profile: Tasmania. Commonwealth of Australia, Canberra.
Australian Institute of Health & Welfare 2007 a. Dementia in Australia National Data Analysis and Development. Australian Institute of Health & Welfare, Canberra.
Australian Institute of Health & Welfare 2007 b. Older Australia at a Glance. Fourth edition, Cat. No. AGE 52, Australian Institute of Health and Welfare, Canberra.
Balducci, C., Mnich, E., McKee, K. J., Lamura, G., Beckmann, A., Krevers, B., Beata, W. Z., Nolan, M., Prouskas, C., Bien, B. and Oberg, B. 2008. Negative impact and positive value in caregiving: validation of the COPE index in a six-country sample of carers. The Gerontologist, 48, 3, 276–86.
Barnes, M. and Brannelly, T. 2008. Achieving care and social justice for people with dementia. Nursing Ethics, 15, 3, 384–95.
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.
Brodaty, H. 2005. Familes of people with dementia. In Sartorius, N., Maj, M. and Okasha, A. (eds), Families and Mental Disorder: From Burden to Empowerment. John Wiley and Sons, New York, 2554.
Brodaty, H., Green, A. and Koschera, A. 2003. Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51, 5, 657–64.
Brodaty, H., Thomson, C., Thompson, C. and Fine, M. 2005. Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20, 6, 537–46.
Brouwer, W., van Exel, N., van Gorp, B. and Redekop, W. 2006. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15, 6, 1005–21.
Bruce, D. G., Paley, G. A., Underwood, P. J., Roberts, D. and Steed, D. 2002. Communication problems between dementia carers and general practitioners: effects on access to community support services. Medical Journal of Australia, 177, 4, 186–8.
Burns, A. and Rabins, P. 2000. Carer burden in dementia. International Journal of Geriatric Psychiatry, 15, supplement 1, S913.
Butler, S. S., Turner, W., Kaye, L. W., Ruffin, L. and Downey, R. 2005. Depression and caregiver burden among rural elderly caregivers. Journal of Gerontological Social Work, 46, 1, 4763.
Cahill, S. 2000. Elderly husbands caring at home for wives diagnosed with Alzheimer's disease: are male caregivers really different? Australian Journal of Social Issues, 35, 1, 5372.
Carpentier, N. 2008. Social care interface in early-stage dementia: practitioners’ perspective on the links between formal and informal networks. Journal of Aging and Health, 20, 6, 710–38.
Cascioli, T. R., Al-Madfai, H., Oborne, P. and Phelps, S. 2008. An evaluation of the needs and service usage of family carers of people with dementia. Quality in Ageing, 9, 2, 1827.
Chambers, M., Ryan, A. A. and Connor, S. L. 2001. Exploring the emotional support needs and coping strategies of family carers. Journal of Psychiatric and Mental Health Nursing, 8, 2, 99106.
Chenier, M. C. 1997. Review and analysis of caregiver burden and nursing home placement: the multiple problems and variables affecting the caregiving relationships require multiple approaches and interventions. Geriatric Nursing, 18, 3, 121–6.
Cheung, J. and Hocking, P. 2004. Caring as worrying: the experience of spousal carers. Journal of Advanced Nursing, 47, 5, 475–82.
Clements, L. 2004. Carers – the sympathy and services stereotype. British Journal of Learning Disabilities, 32, 1, 68.
Cooke, D. D., McNally, L., Mulligan, K. T., Harrison, M. J. G. and Newman, S. P. 2001. Psychosocial interventions for caregivers of people with dementia: a systematic review. Aging & Mental Health, 5, 2, 120–35.
Cooper, C., Katona, C., Orrell, M. and Livingston, G. 2008. Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease. International Journal of Geriatric Psychiatry, 23, 9, 929–36.
Croog, S. H., Burleson, J. A., Sudilovsky, A. and Baume, R. M. 2006. Spouse caregivers of Alzheimer patients: problem responses to caregiver burden. Aging & Mental Health, 10, 2, 87100.
De Vugt, M. E., Stevens, F., Aalten, P., Lousberg, R., Jaspers, N., Winkens, I., Jolles, J. and Verhey, F. R. J. 2004. Do caregiver management strategies influence patient behaviour in dementia? International Journal of Geriatric Psychiatry, 19, 1, 8592.
Deeken, J. F., Taylor, K. L., Mangan, P., Yabroff, K. R. and Ingham, J. M. 2003. Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26, 4, 922–53.
Donelan, K., Falik, M. and DesRoches, C. M. 2001. Caregiving: challenges and implications for women's health. Women's Health Issues, 11, 3, 185200.
Eagar, K., Owen, A., Williams, K., Westera, A., Marosszeky, N., England, R. and Morris, D. 2007. Effective Caring: A Synthesis of the International Evidence on Carer Needs and Interventions. Centre for Health Service Development, University of Wollongong, Wollongong, Australia.
Etters, L., Goodall, D. and Harrison, B. 2008. Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practice, 20, 8, 423–8.
Family Caregiver Alliance 2008. Selected Caregiver Statistics. Available online at www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439. [Accessed October 2010]
Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., Hall, K., Hasegawa, K., Hendrie, H. and Huang, Y. 2006. Global prevalence of dementia: a Delphi consensus study. The Lancet, 366, 9503, 2112–7.
Fuller, J., Edwards, J., Procter, N. and Moss, J. 2000. How definition of mental health problems can influence help seeking in rural and remote communities. Australian Journal of Rural Health, 8, 3, 148–53.
Glasser, M. 1993. Alzheimer's disease and dementing disorders: practices and experiences of rural physicians. American Journal of Alzheimer's Disease and Other Dementias, 8, 4, 2835.
Goins, R. T. and Krout, J. A. (eds) 2006. Service Delivery to Rural Older Adults: Research Policy and Practice. Springer Publishing Company, New York.
Hansen, E. C., Hughes, C., Routley, G. and Robinson, A. L. 2008. General practitioners’ experiences and understandings of diagnosing dementia: factors impacting on early diagnosis. Social Science & Medicine, 67, 11, 1776–83.
Hansen, E., Robinson, A., Mudge, P. and Crack, G. 2005. Barriers to the provision of care for people with dementia and their carers in a rural community. Australian Journal of Primary Health, 11, 1, 72–9.
Hodgson, C., Higginson, I. and Jefferys, P. 1998. The Carer Checklist: An Outcome Measure for People with Dementia and Their Carers. The Mental Health Foundation, London.
Howse, K., Ebrahim, S. and Gooberman-Hill, R. 2004. Help-avoidance: why older people do not always seek help. Reviews in Clinical Gerontology, 14, 1, 6370.
Innes, A., Blackstock, K., Mason, A., Smith, A. and Cox, S. 2005. Dementia care provision in rural Scotland: service users' and carers' experiences. Health & Social Care in the Community, 13, 4, 354–65.
Innes, A., Cox, S., Smith, A. and Mason, A. 2006. Service provision for people with dementia in rural Scotland: difficulties and innovations. Dementia, 5, 2, 249–70.
Jarvis, A. and Worth, A. 2005. The development of a screening tool to identify carers in a general practice by a large-scale mailed survey: the experience in one Scottish general practice. Journal of Clinical Nursing, 14, 3, 363–72.
Jarvis, A., Worth, A. and Porter, M. 2006. The experience of caring for someone over 75 years of age: results from a Scottish General Practice population. Journal of Clinical Nursing, 15, 11, 1450–9.
Keating, N. (ed.) 2008. Rural Ageing: A Good Place to Grow Old? The Policy Presss, Bristol, UK.
Keating, N. and Phillips, J. 2008. A critical human ecology perspective on rural ageing. In Keating, N. (ed.), Rural Ageing: A Good Place to Grow Old? The Policy Presss, Bristol, UK, 110.
Kelley, L. S., Buckwalter, K. C. and Maas, M. L. 1999. Access to health care resources for family caregivers of elderly persons with dementia. Nursing Outlook, 47, 1, 814.
Lund, M. 2005. Caregiver, take care. Geriatric Nursing, 26, 3, 152–3.
Lyons, K. S. and Zarit, S. H. 1999. Formal and informal support: the great divide. International Journal of Geriatric Psychiatry, 14, 3, 183–92.
Mannion, E. 2008 a. Alzheimer's disease: the psychological and physical effects of the caregiver's role. Part 1. Nursing Older People, 20, 4, 2732.
Mannion, E. 2008 b. Alzheimer's disease: the psychological and physical effects of the caregiver's role. Part 2. Nursing Older People, 20, 4, 33–8.
Marks, N. F. 1998. Does it hurt to care? Caregiving, work–family conflict, and midlife well-being. Journal of Marriage and the Family, 60, 4, 951–66.
Mason, A., Blackstock, K., Cox, S., Innes, A. and Smith, A. 2005. Dementia services in rural areas: nursing implications. Nursing Older People, 17, 9, 20–3.
McCann, S., Ryan, A. A. and McKenna, H. 2005. The challenges associated with providing community care for people with complex needs in rural areas: a qualitative investigation. Health & Social Care in the Community, 13, 5, 462–9.
McGarry, J. and Arthur, A. 2001. Informal caring in late life: a qualitative study of the experiences of older carers. Journal of Advanced Nursing, 33, 2, 182–9.
McGee, H. M., Molloy, G., O'Hanlon, A., Layte, R. and Hickey, A. 2008. Older people –recipients but also providers of informal care: an analysis among community samples in the Republic of Ireland and Northern Ireland. Health & Social Care in the Community, 16, 5, 548–53.
McKee, K. J., Philp, I., Lamura, G., Prouskas, C., Oberg, B., Krevers, B., Spazzafumo, L., Bien, B., Parker, C. and Nolan, M. R. 2003. The COPE index – a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people. Aging and Mental Health, 7, 1, 3952.
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 & Medicine, 55, 7, 1129–42.
Morgan, D. G., Stewart, N. J., Crossley, M., D'Arcy, C., Biem, J., Kirk, A. and Forbes, D. 2005. Dementia care in rural and remote areas: the first year of a CIHR new emerging team. Canadian Journal of Nursing Research, 37, 1, 177–82.
National Rural Health Alliance 2010. Measuring the Metropolitan–Rural Inequity. National Rural Health Alliance, Policy Document. Available online at http://nrha.ruralhealth.org.au/ftp/NRHA-measuring-the-inequity.pdf. [Accessed April 2011]
Nolan, M., Keady, J. and Grant, G. 1995. Developing a typology of family care: implications for nurses and other service providers. Journal of Advanced Nursing, 21, 2, 256–65.
Nomura, M., Makimoto, K., Kato, M., Shiba, T., Matsuura, C., Shigenobu, K., Ishikawa, T., Matsumoto, N. and Ikeda, M. 2007. Empowering the elderly with early dementia and family caregivers: a participatory action research study. International Journal of Nursing Studies, 46, 4, 431–41.
Nordberg, G. 2007. Formal and Informal Care in an Urban and a Rural Elderly Population: Who? When? What? Aging Research Center, Karolinska Institutet, Stockholm, Sweden.
Nordberg, G., Strauss, E.v., Kåreholt, I., Johansson, L. and Wimo, A. 2005. The amount of informal and formal care among non-demented and demented elderly persons – results from a Swedish population-based study. International Journal of Geriatric Psychiatry, 20, 9, 862–71.
Rahman, N. 1999. Understanding conflict: perception of female caregivers. Australian Journal on Ageing, 18, 140–4.
Robinson, A., Elder, J., Emden, C., Lea, E., Turner, P. and Vickers, J. 2009. Information pathways into dementia care services: family carers have their say. Dementia, 8, 1, 1737.
Rogers, C. C. 2002. The older population in 21st century rural America. Rural America, 17, 3, 210.
Ross, A., Lloyd, J., Weinhardt, M. and Chershire, H. 2008. Living and Caring? An Investigation of the Experiences of Older Carers. National Centre for Social Research on behalf of the International Longevity Centre – UK (ILC-UK), London, UK.
Ross, L., Holliman, D. and Dixon, D. R. 2003. Resiliency in family caregivers: implications for social work practice. Journal of Gerontological Social Work, 40, 3, 8196.
Rutherford-Kitson, A., Burton-Smith, R. and Ball, P. 2002. Caring for a partner: the impact of resources on caregivers' health in rural and urban Tasmania. Australian Journal of Psychology, 54, 2, 110–35.
Schneider, J., Murray, J., Banerjee, S. and Mann, A. 1999. EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I – Factors associated with carer burden. International Journal of Geriatric Psychiatry, 14, 8, 651–61.
Schofield, H. L., Herrman, H. E., Bloch, S., Howe, A. and Singh, B. 1997. A profile of Australian family caregivers: diversity of roles and circumstances. Australian and New Zealand Journal of Public Health, 21, 1, 5966.
Schulz, R. and Beach, S. R. 1999. Caregiving as a risk factor for mortality: the caregiver health effects study. Journal of the American Medical Association, 282, 23, 2215–9.
Simon, C. 2001. Informal carers and the primary care team. British Journal of General Practice, 51, 472, 920–3.
Sorensen, S., Pinquart, M. and Duberstein, P. 2002. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 3, 356–72.
Spector, J. and Tampi, R. 2005. Caregiver depression. Annals of Long Term Care, 13, 4, 34.
Stirling, C., Andrews, S., Croft, T., Vickers, J., Turner, P. and Robinson, A. 2010. Measuring dementia carers' unmet need for services – an exploratory mixed method study. BMC Health Services Research, 10, 122. Available online at http://www.biomedcentral.com/1472–6963/10/122. [Accessed October 2011].
Stoltz, P., Uden, G. and Willman, A. 2004. Support for family carers who care for an elderly person at home – a systematic literature review. Scandanavian Journal of Caring Science, 18, 2, 111–9.
Tester, S. 1999. Commentary on: useful services for families: research findings and directions. International Journal of Geriatric Psychiatry, 14, 3, 178–9.
Tilvis, R. S., Jolkkonen, K. H. P. J. and Strandberg, T. E. 2000. Social networks and dementia. The Lancet, 356, 9223, 77–8.
Tommis, Y. 2007. Rural–urban differences in the effects on mental well-being of caring for people with stroke or dementia. Aging & Mental Health, 11, 6, 743–50.
Toseland, R. W., McCallion, P., Gerber, T. and Banks, S. 2002. Predictors of health and human services use by persons with dementia and their family caregivers. Social Science & Medicine, 55, 7, 1255–66.
United Nations 2010. World Population Prospects: The 2008 Revision. Department of Economic and Social Affairs, Population Division, United Nations, New York.
Wagner, D. L. and Niles-Yokum, K. J. 2006. Caregiving in a rural context. In Goins, R. T. and Krout, J. A. (eds), Service Delivery to Rural Older Adults: Research Policy and Practice. Springer Publishing Company, New York, 145–62.
Wenger, G. C., Scott, A. and 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.
Wimo, A., Sjölund, B. M., Sköldunger, A., Johansson, L., Nordberg, G. and von Strauss, E. 2011. Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons results from a 3-year follow-up population-based study. International Journal of Geriatric Psychiatry, 26, 1, 5664.
Yap, L. K. P., Seow, C. C. D., Henderson, L. M. and Goh, Y. N. J. 2006. Family caregivers and caregiving in dementia. Reviews in Clinical Gerontology, 15, 3/4, 263–71.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Ageing & Society
  • ISSN: 0144-686X
  • EISSN: 1469-1779
  • URL: /core/journals/ageing-and-society
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords

Metrics

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