Abstract
Parkinson’s disease (PD) is the second most common neurological disorder in Australia typically affecting people over the age of 65. Few studies of people living with Parkinson’s disease have estimated current hours of home support and unmet needs. In addition no studies have been found that estimate hours of unmet need in terms of functioning or care arrangements or examined whether these estimates differ depending on the viewpoints of carers and the people living with PD whom they care for. In 2007, we surveyed the home care support needs of adults diagnosed with Parkinson’s disease in Western Australia (WA). The survey revealed that adults living with Parkinson’s disease prefer, and can be supported with, home care support services in lieu of residential care placement. As expected, required services increased as functioning decreased. In addition, unmet needs were found to be greater for those with carers irrespective of their level of functional dependency. Unmet needs for weekly services, for people that require home support services, are estimated at 38, 33, 55 and 47 min for personal care, cleaning, social support, and gardening and home maintenance, respectively. The survey also found that most carers and people living with PD agreed that current levels of different types of home care support including nursing were either adequate or insufficient; some carers preferred more services even if the people living with PD were satisfied and some people living with PD wanted more services even if their carers reported needing no extra help. Respite was used by 29 % of people living with PD with carers with two thirds wanting more opportunities for respite. Of the 71 % of people living with PD with carers who had not used respite, less than half stated that they would like to use respite. The 2007 survey was followed by interviews with a sample of survey respondents at different stages of their disorder. In the interviews, most of the people living with Parkinson’s disease commented that continuing to remain at home depended on the rate of degeneration of their disorder as well as the ability of their carers to continue to care. Most of these people and their careers were living day-to-day with a hope that enough support would be made available if and when they need it. As vocal Baby Boomers age, policymakers would do well to acknowledge the diversity of care needs for people with Parkinson’s disease and address the quantum and type of support to meet these needs.
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References
Aarsland, D., Bronnick, K., & Fladby, T. (2011). Mild cognitive impairment in Parkinson’s disease. Current Neurology and Neuroscience Reports, 11, 371–378.
Access Economics. (2005). The Economic Value of Informal Care. Report for Carers Australia Canberra, ACT: Access Economics.
Aoun, S. M., Kristjanson, L., & Oldham, L. (2006). The challenges and unmet needs of people with neurodegenerative conditions and their carers. ACCNS Journal for Community Nurses, 11(1), 17–20.
Bhimani, R. (2014). Understanding the Burden on Caregivers of People with Parkinson’s: A Scoping Review of the Literature. Rehabilitation Research and Practice, September.
Blackmer, J. (2009). Parkinson Disease. eMedicine. http://emedicine.medscape.com/article/312519-overview. Accessed 25 March, 2013.
Boeve, B. F., Silber, M. H., & Ferman, T. J. (2004). REM sleep behavior disorder in Parkinson’s disease and dementia with Lewy bodies. Journal of Geriatric Psychiatry and Neurology, 17(3), 146–157.
Brereton, L., Gardiner, C., Gott, M., Ingleton, C., Barnes, S., & Carroll, C. (2012). The hospital environment for end of life care of older adults and their families: an integrative review. Journal of Advanced Nursing, 68(5), 981–993.
Brown, M. B., & Forsythe, A. B. (1974). The ANOVA and multiple comparisons for data with heterogeneous variances. Biometrics, 30(4), 719–724.
Bruera, E. (2006). Process and content of decision making by advanced cancer patients. Journal of Clinical Oncology, 24(7), 1029–1030.
Collin, C., Wade, D. T., Davies, S., & Horne, V. (1988). The Barthel ADL index: a reliability study. International Disabilities Studies, 10, 61–63.
Cracknell, R. (2010). The ageing population. London: House of Commons Library Research.
Dowding, C. H., Shenton, C. L., & Salek, S. S. (2006). A review of the health-related quality of life and economic impact of parkinsons disease. Drugs and Aging, 23(9), 693–721.
Economics, A. (2007). Living with Parkinson’s disease: challenges and positive steps for the future. Canberra: ACT: Access Economics Pty Ltd.
Fine, M. D. (2012). Employment and informal care: sustaining paid work and caregiving in community and home-based care. Ageing International, 37(1), 57–68.
Foltynie, T., Brayne, C. E. G., Robbins, T. W., & Barker, R. A. (2004). The cognitive ability of an incident cohort of Parkinson’s patients in the UK. The CamPaIGN study. Brain, 127(3), 550–560.
Giles, M., & Lewin, G. (2008a). An Investigation into the Home Support Needs of Adults Living with Multiple Sclerosis, Huntington’s, Parkinson’s and Motor Neurone Diseases: Client and carer survey results. Osborne Park: Silver Chain.
Giles, M., & Lewin, G. (2008b). An Investigation into the Home Support Needs of Adults Living with Multiple Sclerosis, Huntington’s, Parkinson’s and Motor Neurone Diseases: Key Issues and Unmet Needs - Health, Allied Health and Service Provider Perspectives. Osborne Park: Silver Chain.
Hall, M. I. (2003). The care agreement: attractions and pitfalls. Elder Law Review, 2, 1–9.
Hely, M. A., Reid, W. G. J., Adena, M. A., Halliday, G. M., & Morris, J. G. L. (2008). The Sydney multicenter study of Parkinson’s disease: the inevitability of dementia at 20 years. Movement Disorders, 23(6), 837–844.
Kristjanson, L. (2004). Assessment of the Effectiveness of Australian Models of Palliative Care Delivery in Four Neurodegenerative Disorders. Perth: Edith Cowan University.
Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179–186.
Lyons, K. S., Zarit, S. H., Sayer, A. G., & Whitlatch, C. J. (2002). Caregiving as a dyadic process: perspectives from caregiver and receiver. Journal of Gerontology: Psychological Sciences, 57B(3), 195–P204.
Myers, J., & Chakraborty, A. (2011). Neurodegenerative disorders. In L. L. Emmanuel & S. L. Librach (Eds.), Palliative Care: Core Skills and Clinical Competencies (2nd ed., pp. 435–450). St Louis: Elsevier.
O’Connor, M., & Pearson, A. (2004). Ageing in place - dying in place: competing discourses for care of the dying in aged care policy. Australian Journal of Advanced Nursing, 22(2), 32–38.
Parkinson’s WA. (2012). Clinical Services - Parkinson’s Nurse Specialist Service. Perth, Western Australia.
Porter, B., Henry, S. R., Gray, W. K., & Walker, R. W. (2010). Care requirements of a prevalent population of people with idiopathic Parkinson’s disease. Age and Ageing, 39(1), 57–61.
Productivity Commission. (2005). Economic Implications of an Ageing Australia: The Prevalence of Disability. http://www.pc.gov.au/study/ageing/finalreport/technicalpapers/technicalpaper07.pdf . Accessed 17 April, 2013.
Salah Uddin, A. B. M., & Jarmi, T. (2007). REM Sleep Behavior Disorder. e-medicine, 11 January.
Sandvoll, A., Kristoffersen, K., & Hauge, S. (2012). New quality regulations versus established nursing home practice: a qualitative study. BMC Nursing, 11(1), 7.
Scharlach, A. (2012). Creating aging-friendly communities in the United States. Ageing International, 37(1), 25–38.
StataCorp LP. (1996–2008). Stata/SE software. College Station, Texas: StataCorp LP.
Stephan, B. C. M., Wharton, S. B., Simpson, J., Matthews, F. E., Ince, P., & Brayne, C. (2012). The epidemiological neuropathology of dementia and the implications for drug development. Neurodegenerative Disease Management, 2(5), 471–482.
U.S. Census Bureau. (2012). 2012 National Population Projections: Summary Tables. http://www.census.gov/population/projections/data/national/2012/summarytables.html. Accessed 17 March, 2013.
US Department of Health and Human Services. (2012). Projected Future Growth of the Older Population. Washington: Administration on Aging.
World Health Organisation. (2010). International Classification of Diseases (ICD) Version 10. Geneva: WHO.
Funding
The survey was funded by LotteryWest, the state lottery of WA, as part of a larger project (Grant Ref: 253/20060277) investigating the home support needs of adults living with neurodegenerative disorders.
Conflict of Interest
Margaret Giles, Meghan Thomas and Gill Lewin declare that they have no conflict of interest.
Informed Consent
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
Ethical Treatment of Experimental Subjects (Animal and Human)
Approval for this study and its procedures was given by the Silver Chain Human Research Ethics Committee and the ethics and research committees of other agencies and providers who were involved in this study.
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Giles, M., Thomas, M. & Lewin, G. Ageing Intensifies the Care Needs of Adults Living with Parkinson ’s Disease and their Carers. Ageing Int 40, 338–352 (2015). https://doi.org/10.1007/s12126-014-9217-8
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DOI: https://doi.org/10.1007/s12126-014-9217-8