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Seeking respite: issues around the use of day respite care for the carers of people with dementia

Published online by Cambridge University Press:  14 March 2011

ANDREW ROBINSON ,
EMMA LEA ,
LYNN HEMMINGS ,
GILLIAN VOSPER ,
DAMHNAT McCANN ,
FELICITY WEEDING  and
ROGER RUMBLE
ANDREW ROBINSON*
Affiliation:
School of Nursing and Midwifery, University of Tasmania, Hobart, Australia.
EMMA LEA
Affiliation:
School of Nursing and Midwifery, University of Tasmania, Hobart, Australia.
LYNN HEMMINGS
Affiliation:
School of Nursing and Midwifery, University of Tasmania, Hobart, Australia.
GILLIAN VOSPER
Affiliation:
School of Nursing and Midwifery, University of Tasmania, Hobart, Australia.
DAMHNAT McCANN
Affiliation:
School of Nursing and Midwifery, University of Tasmania, Hobart, Australia.
FELICITY WEEDING
Affiliation:
Community Services, Uniting Aged Care-Southern Tasmania, Australia.
ROGER RUMBLE
Affiliation:
School of Pharmacy, University of Tasmania, Hobart, Australia.
*
Address for correspondence: Andrew Robinson, Wicking Dementia Research and Education Centre, Menzies Research Institute, University of Tasmania, Private Bag 121, Hobart, TAS 7001, Australia. E-mail: [email protected]
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Abstract

Ageing in Place policies have transferred responsibility for many frail elderly people and those living with dementia from residential to in-home care. Despite this placing a greater obligation on families, in Australia carers continue to under-use day respite services. This qualitative design study identified issues around the use of day respite care from the perspective of the family carer, focusing on barriers to attendance and strategies to facilitate attendance. Telephone interviews were held in 2007 with Tasmanian carers whose family member refused to attend day respite care (ten carers) and those whose family member attended (17). Carers considering day respite care were often overwhelmed by the quantity of information, confused about the process, and worried about the recipient's safety in an unfamiliar environment. They felt anxious about public acknowledgement of the condition leading to fear of embarrassment. Day respite care users appreciated the break it provided them and the opportunity for their family member to socialise. To facilitate a greater uptake of day respite care, reliable information sources and strategies to help carers deal with the emotions they face on a daily basis, together with a wider social acceptance of dementia, are important. Furthermore, carers need an opportunity to talk with others, enabling them to gain support from those who have successfully introduced a family member to day respite care.

Keywords

carersdementiaday respitesupportcaregivingAustralia
Type
Articles
Information
Ageing & Society , Volume 32 , Issue 2 , February 2012 , pp. 196 - 218
Copyright
Copyright © Cambridge University Press 2011

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References

Access Economics. 2010. Caring Places: Planning for Aged Care and Dementia 2010–2050. Report for Alzheimer's Australia. Access Economics, Canberra.Google Scholar
Al Mahdy, H. 2004. Realities of respite care. Health Services Management Research, 17, 4, 272–5.CrossRefGoogle ScholarPubMed
Alzheimer's Disease International. 2009. World Alzheimer Report 2009. Alzheimer's Disease International, London.Google Scholar
Ashworth, M. and Baker, A. H. 2000. ‘Time and space’: carers' views about respite care. Health and Social Care in the Community, 8, 1, 50–6.CrossRefGoogle ScholarPubMed
Australian Institute of Health and Welfare (AIHW) 2003. Australia's Welfare 2003. AIHW, Canberra.Google Scholar
Australian Institute of Health and Welfare (AIHW) 2004. The Impact of Dementia on the Health and Aged Care Systems. AIHW Cat. No. AGE 37, AIHW, Canberra.Google Scholar
Australian Institute of Health and Welfare (AIHW) 2007. Dementia in Australia: National Data Analysis and Development. AIHW Cat. No. AGE 53, AIHW, Canberra.Google Scholar
Australian Institute of Health and Welfare (AIHW). 2009 a. Australia's Welfare 2009. Australia's Welfare Series No. 9, AIHW Cat. No. AUS 117, AIHW, Canberra.Google Scholar
Australian Institute of Health and Welfare (AIHW). 2009 b. Residential Aged Care in Australia 2007–08: A Statistical Overview. Aged Care Statistic Series 28, Cat. No. AGE 58, AIHW, Canberra.Google Scholar
Bacon, V. and Lambkin, C. 1997. The relationship between the delivery of day care services for older people and the design of day unit premises. Ageing & Society, 17, 41–64.CrossRefGoogle Scholar
Berg, B. L. 2004. Qualitative Research Methods for the Social Sciences. Pearson Education, Boston.Google Scholar
Braithwaite, V. 1998. Institutional respite care: breaking chores or breaking social bonds? The Gerontologist, 38, 610–7.CrossRefGoogle ScholarPubMed
Brodaty, H., Draper, B. M. and Low, L. 2003. Behavioural and psychological symptoms of dementia: a seven-tiered model of service delivery. Medical Journal of Australia, 178, 231–4.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Brody, E. M., Saperstein, A. R. and Powell Lawton, M. 1989. A multi-service respite program for caregivers of Alzheimer's patients. Journal of Gerontological Social Work, 14, 1/2, 41–74.CrossRefGoogle Scholar
Bruen, W. and Howe, A. 2009. Respite care for people living with dementia. Discussion Paper 17, Alzheimer's Australia, Canberra.Google Scholar
Burgener, S. C. and Berger, B. 2008. Measuring perceived stigma in persons with progressive neurological disease. Dementia, 7, 1, 31–53.CrossRefGoogle Scholar
Cantegreil-Kallen, I., Turbelin, C., Angel, P., Flahault, A. and Rigaud, A.-S. 2006. Dementia management in France: health care and support services in the community. Dementia, 5, 3, 317–26.CrossRefGoogle Scholar
Cheek, J. Gillham, D., Ballantyne, A., Roder-Allen, G., Quan, J., Lewin, G., Flett, P., Mussared, J., Walker, M. and Vandermeulen, S. 2006. Improving care transitions of older people: challenges for today and tomorrow. Quality in Ageing – Policy, Practice and Research, 7, 4, 18–26.CrossRefGoogle Scholar
Cohen-Mansfield, J., Besansky, J., Watson, V. and Bernhard, L. J. 1994. Underutilization of adult day care: an exploratory study. Journal of Gerontological Social Work, 22, 1/2, 21–39.CrossRefGoogle Scholar
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 and Mental Health, 5, 2, 120–35.CrossRefGoogle ScholarPubMed
Cotrell, V. 1996. Respite use by dementia caregivers: preferences and reasons for initial use. Journal of Gerontological Social Work, 26, 3/4, 35–55.CrossRefGoogle Scholar
de la Cuesta-Benjumea, C. 2010. The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving. Journal of Advanced Nursing, 66, 5, 988–98.CrossRefGoogle Scholar
Department of Health 2009. National Carers' Strategy. Department of Health, London. Available online at http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Carers/NewDealforCarers/index.htm [Accessed 6 October 2010].Google Scholar
Department of Health and Ageing (DoHA) 2006. Respite Care. Australian Government DoHA, Canberra. Available online at http://agedcare.gov.au/internet/agedcare/publishing.nsf/Content/Respite+care [Accessed 20 January 2010].Google Scholar
Department of Health and Ageing (DoHA) 2009. Commonwealth Respite and Carelink Centres. Australian Government DoHA, Canberra. Available online at http://www9.health.gov.au/ccsd/ [Accessed 12 October 2010].Google Scholar
Dröes, R., Meiland, F., Schmitz, M. and van Tilburg, W. 2006. Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-field study. Aging and Mental Health, 10, 2, 112–24.CrossRefGoogle Scholar
Femia, E. E., Zarit, S. H., Stephens, M. A. P. and Greene, R. 2007. Impact of adult day services on behavioral and psychological symptoms of dementia. Gerontologist, 47, 6, 775–88.CrossRefGoogle ScholarPubMed
Gaugler, J., Jarrott, S., Zarit, S., Parris Stephens, M.-A., Townsend, A. and Greene, R. 2003. Adult day service use and reductions in caregiving hours: effects on stress and psychological well-being for dementia caregivers. International Journal of Geriatric Psychiatry, 18, 55–62.CrossRefGoogle ScholarPubMed
Gilmour, J. 2002. Dis/integrated care: family caregivers and in-hospital respite care. Journal of Advanced Nursing, 39, 6, 546–62.CrossRefGoogle ScholarPubMed
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 and Medicine, 67, 11, 1776–83.CrossRefGoogle ScholarPubMed
Hanson, E. J., Tetley, J. and Clarke, A. 1999. Respite care for frail older people and their family carers: concept analysis and user focus group findings of a pan-European nursing research project. Journal of Advanced Nursing, 30, 6, 1396–407.CrossRefGoogle ScholarPubMed
Hemmings, L. 1996. Remembering Vietnam: an oral history of RAANC nurses who served in Vietnam. PhD thesis, Griffith University, Queensland, Australia.Google Scholar
HM Government 2008. Carers at the Heart of 21st-century Families and Communities: ‘A Caring System on Your Side. A Life of Your Own’. HM Government, London.Google Scholar
Lee, H. and Cameron, M. 2004. Respite care for people with dementia and their carers. Cochrane Database of Systematic Reviews, 1, Art. No.: CD004396.CrossRefGoogle Scholar
Lemieux-Charles, L., Chambers, L. W., Cockerill, R., Jaglal, S., Brazil, K., Cohen, C., LeClair, K., Dalziel, B. and Schulman, B. 2005. Evaluating the effectiveness of community-based dementia care networks: the Dementia Care Networks' Study. The Gerontologist, 45, 456–64.CrossRefGoogle ScholarPubMed
Lincoln, Y. S. and Guba, E. G. 1985. Naturalistic Inquiry. Sage, Beverly Hills, California.CrossRefGoogle Scholar
MacKenzie, J. 2006. Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia, 5, 2, 233–47.CrossRefGoogle Scholar
Madeo, A., Feld, S. and Spencer, B. 2008. Ethical and practical challenges raised by an adult day program's caregiver satisfaction survey. American Journal of Alzheimer's Disease and Other Dementias, 23, 5, 423–9.CrossRefGoogle ScholarPubMed
Manthorpe, J., Illiffe, S. and Eden, A. 2003. Testing Twigg and Atkin's typology of caring: a study of primary care professionals' perceptions of dementia care using a modified focus group method. Health & Social Care in the Community, 11, 6, 477–85.CrossRefGoogle ScholarPubMed
Markle-Reid, M. and Browne, G. 2001. Explaining the use and non-use of community-based long-term care services by caregivers of persons with dementia. Journal of Evaluation in Clinical Practice, 7, 3, 271–87.CrossRefGoogle ScholarPubMed
Mävall, L. and Malmberg, B. 2007. Day care for persons with dementia: an alternative for whom? Dementia, 6, 1, 27–43.CrossRefGoogle Scholar
Mävall, L. and Thorslund, M. 2007. Does day care also provide care for the caregiver? Archives of Gerontology and Geriatrics, 45, 2, 137–50.CrossRefGoogle Scholar
Morrissey, M. 2006. Rethinking the benefits of an adapted version of ‘Alzheimer Café’ for individuals with Alzheimer's and their partners. The International Journal of Psychiatric Nursing Research, 12, 1, 1393–401.Google ScholarPubMed
Mossello, E., Caleri, V., Razzi, E., Di Bari, M., Cantini, C., Tonon, E., Lopilato, E., Marini, M., Simoni, D., Cavallini, M. C., Marchionni, N., Biagini, C. A. and Masotti, G. 2008. Day care for older dementia patients: favorable effects on behavioral and psychological symptoms and caregiver stress. International Journal of Geriatric Psychiatry, 23, 1066–72.CrossRefGoogle ScholarPubMed
Neville, C. C. and Byrne, G. J. A. 2002. Behavior of older people admitted for residential respite care. Australian Journal of Advanced Nursing, 20, 1, 8–12.Google ScholarPubMed
Nicoll, M., Ashworth, M., McNally, L. and Newman, S. 2002. Satisfaction with respite care: a pilot study. Health and Social Care in the Community, 10, 6, 479–84.CrossRefGoogle ScholarPubMed
Nomura, M., Makimoto, K., Kato, M., Shiba, T., Matsuura, C., Shigenobu, K., Ishikawa, T., Matsumoto, N. and Ikeda, M. 2009. Empowering older people with early dementia and family caregivers: a participatory action research study. International Journal of Nursing Studies, 46, 431–41.CrossRefGoogle ScholarPubMed
O'Connor, A. M., Bennett, C. L., Stacey, D., Barry, M., Col, N. F., Eden, K. B., Entwistle, V. A., Fiset, V., Holmes-Rovner, M., Khangura, S., Llewellyn-Thomas, H. and Rovner, D. 2009. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews Issue 3, Art. No.: CD001431. doi:10.1002/14651858.CD001431.pub2.CrossRefGoogle Scholar
Powell Davies, G., Hu, W., McDonald, J., Furler, J., Harris, E. and Harris, M. 2006. Developments in Australian general practice 2000–2002: what did these contribute to a well functioning and comprehensive Primary Health Care System? Australia and New Zealand Health Policy, 3, 1. Available online at http://www.anzhealthpolicy.com/content/pdf/1743-8462-3-1.pdf [Accessed 23 September 2009].CrossRefGoogle Scholar
Ritchie, L. 2003. Adult day care: northern perspectives. Public Health Nursing, 20, 2, 120–31.CrossRefGoogle ScholarPubMed
Robinson, A., Elder, J., Emden, C., Lea, E., Vickers, J. and Turner, P. 2009. Information pathways into dementia care services: family carers have their say. Dementia: The International Journal of Social Research and Practice, 8, 17–37.CrossRefGoogle Scholar
Robinson, L., Iliffe, S., Brayne, C., Goodman, C., Rait, G., Manthorpe, J., Ashley, P., Moniz-Cook, E. and DeNDRoN Primary Care Clinical Studies Group. 2010. Primary care and dementia: 2. Long-term care at home: psychosocial interventions, information provision, carer support and case management. International Journal of Geriatric Psychiatry, 25, 657–64.CrossRefGoogle ScholarPubMed
Robinson, A., Rumble, R., McCann, D., Nicols, H., Weeding, F., Vosper, G. and Lea, E. 2008. Report on the audit of 10 day respite centres in southern Tasmania. Unpublished report, School of Nursing and Midwifery, University of Tasmania, Tasmania, Australia.Google Scholar
Schacke, C. and Zank, S. R. 2006. Measuring the effectiveness of adult day care as a facility to support family caregivers of dementia patients. The Journal of Applied Gerontology, 25, 1, 65–81.CrossRefGoogle Scholar
Smith, E. M. 2005. Telephone interviewing in healthcare research: a summary of the evidence. Nurse Researcher, 12, 3, 32–41.CrossRefGoogle ScholarPubMed
Smyer, T. and Chang, B. L. 1999. A typology of consumers of institutional respite care. Clinical Nursing Research, 8, 1, 26–50.CrossRefGoogle ScholarPubMed
Speziale, H. J. S. and Carpenter, D. R. 2007. Qualitative Research in Nursing: Advancing the Humanistic Imperative. Lippincott, Williams and Wilkins, Philadelphia.Google Scholar
Stewart, M., Barnfather, A., Neufeld, A., Warren, S., Letourneau, N. and Liu, L. 2006. Accessible support for family caregivers of seniors with chronic conditions: from isolation to inclusion. Canadian Journal on Aging, 25, 2, 179–92.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Stockwell-Smith, G., Kellett, U. and Moyle, W. 2010. Why carers of frail older people are not using available respite services: an Australian study. Journal of Clinical Nursing, 19, 2057–64.CrossRefGoogle Scholar
Toseland, R., 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 and Medicine, 55, 7, 1255–66.CrossRefGoogle ScholarPubMed
Treloar, A. 2001. Night respite care: relieving the burden on people caring for relatives with dementia. Nursing Older People, 13, 3, 14–5.CrossRefGoogle ScholarPubMed
Twigg, J. and Atkin, K. 1994. Carers Perceived, Policy and Practice in Informal Care. Open University Press, Buckingham, UK.Google Scholar
van Exel, J., de Graaf, G. and Brouwer, W. 2007. Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology. Health Policy, 83, 2/3, 332–42.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M. J. F. J., Moniz-Cook, E. D., Woods, R. T., De Lepeleire, J., Leuschner, A., Zanetti, O., de Rotrou, J., Kenny, J., Franco, M., Peters, V. and Iliffe, S. 2005. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. International Journal of Geriatric Psychiatry, 20, 4, 377–86.CrossRefGoogle ScholarPubMed
Vickrey, B. G., Mittman, B. S., Connor, K. I., Pearson, M. L., Della Penna, R. D., Ganiats, T. G., DeMonte, R. Jr., Chodosh, J., Cui, X., Vassar, S., Duan, N. and Lee, M. 2006. The effect of a disease management intervention on quality and outcomes of dementia care. Annals of Internal Medicine, 145, 713–26.CrossRefGoogle ScholarPubMed
Warren, S., Kerr, J. R., Smith, D., Godkin, D. and Schalm, C. 2003. The impact of adult day programs on family caregivers of elderly relatives. Journal of Community Health Nursing, 20, 4, 209–21.CrossRefGoogle ScholarPubMed
Watts, J. H. and Teitelman, J. 2005. Achieving a restorative mental break for family caregivers of persons with Alzheimer's disease. Australian Occupational Therapy Journal, 52, 282–92.CrossRefGoogle Scholar
Werner, P. and Heinik, J. 2008. Stigma by association and Alzheimer's disease. Aging and Mental Health, 12, 1, 92–9.CrossRefGoogle ScholarPubMed
Witt, E., Chenoweth, L. and Jeon, Y.-H. 2004. Respite services for older persons and their family carers in southern Sydney. Collegian, 11, 4, 31–5.CrossRefGoogle Scholar
Worth, A. and Tierney, A. J. 1993. Conducting research interviews with elderly people by telephone. Journal of Advanced Nursing, 18, 1077–84.CrossRefGoogle ScholarPubMed
Zarit, S. H., Stephens, M. A. P., Townsend, A. and Greene, R. 1998. Stress reduction for family caregivers: effects of adult day care use. Journal of Gerontology, 53B, 5, S267–77.CrossRefGoogle Scholar