Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.
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INTRODUCTION: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.
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Published Version (Please cite this version)10.1089/jpm.2009.0318
Publication InfoAbernethy, Amy Pickar; Aoun, S; Currow, DC; & McConigley, R (2010). Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia. J Palliat Med, 13(6). pp. 653-661. 10.1089/jpm.2009.0318. Retrieved from https://hdl.handle.net/10161/3292.
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Adjunct Professor in the Department of Medicine
Amy P. Abernethy, MD PhDDirector, Center for Learning Health Care Director, Duke Cancer Care Research Program Professor of Medicine, Department of Medicine, Division of Medical Oncology, Duke University School of Medicine Associate Professor of Nursing, Duke University School of NursingDr. Abernethy, a hematologist/oncologist and palliative care physician, is Professor of Medicine in the Duke University School of Medicine, Director of the Duke Center for Learn
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