Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.
Abstract
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.
Type
Journal articleSubject
AgedCaregivers
Cost of Illness
Cross-Sectional Studies
Data Collection
Female
Humans
Male
Needs Assessment
Neurodegenerative Diseases
South Australia
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https://hdl.handle.net/10161/3292Published Version (Please cite this version)
10.1089/jpm.2009.0318Publication Info
Aoun, Samar; McConigley, Ruth; Abernethy, Amy; & Currow, David C (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.This is constructed from limited available data and may be imprecise. To cite this
article, please review & use the official citation provided by the journal.
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Show full item recordScholars@Duke
Amy Pickar Abernethy
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
This author no longer has a Scholars@Duke profile, so the information shown here reflects
their Duke status at the time this item was deposited.

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