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Understanding the Care Needs and Profile of People Living at Home With Moderate to Advanced Stage Parkinson Disease

Lookup NU author(s): Professor Richard Walker

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Abstract

© The Author(s) 2018. Background: In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home. Method: All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks. Results: Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer. Conclusions: Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.

Publication metadata

Author(s): Hand A, Oates LL, Gray WK, Walker RW

Publication type: Article

Publication status: Published

Journal: Journal of Geriatric Psychiatry and Neurology

Year: 2018

Volume: 31

Issue: 5

Pages: 237-247

Print publication date: 01/09/2018

Online publication date: 16/07/2018

Acceptance date: 02/04/2018

ISSN (print): 0891-9887

ISSN (electronic): 1552-5708

Publisher: SAGE Publications Inc.

URL: https://doi.org/10.1177/0891988718788680

DOI: 10.1177/0891988718788680

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