Objective: To look at predictors to care home placement for people with Parkinson’s (PD) along with the experience of those already in care and identify difference service models to manage their needs.

Background: Many people with PD (PwP) will require care from either informal carers (e.g. wife/husband/family) or formal carers (paid carers) within their own home as their condition progresses. At some stage it may not be possible to maintain the PwP at home and institutional care is required. PD is one of the leading causes of institutionalisation but there are few UK data on the prevalence of PwP in institutional care. Data on predictors for care home placement are very limited. There are also no specific statements in relation to standards of good practice in care homes for PwP.

Methods: This is a mixed methods study and is divided into 4 sections.

Study Overview

	Part A	Part B	Part C	Part D
Design	Cross-sectional cohort study	Prospective, longitudinal study with 10 year follow up	Retrospective audit of medical notes	Surveys
Participants	People with PD in care home setting	PD H&Y 3< still living at home/carers (if applicable)	5 Specialist PD Services	PDNS/PUK/Care Home Staff

” For Parts A and B all PwP known to the Northumbria PD Service, still living at home (Hoehn and Yahr stage 3 or above), or living in a care home were invited to participate. Data collection includes demographics, rating scales for disease severity, cognition, quality of life, motor/non-motor symptoms and service use, qualitative interviews were also conducted for more in-depth data. For Part C 4 other PD specialist services were recruited. Surveys were developed for Part D and distributed to all known UK PD Nurse Specialists (PDNS), Parkinson’s UK information staff and also care home staff in North Tyneside and Northumberland.

Results: Part A: 93 PwP (approximatley 14% of those under the PD Northumbria Service) were identified as living in a care home. 289 PwP were identified as meeting the inclusion criteria for Part B. Audit data is being collated on prevalence of PwP in care home placement and service delivery models for Part C. 158 responses have been received from PDNS, 69 from PUK staff and 53 from care home staff for Part D. Data collection remains ongoing.

Conclusions: Initial data demonstrate that a high proportion of PwP are living in institutional care. Multiple barriers have been identified to managing these PwP with no clear standard model of care. It is clearly an area of unmet need for PwP and their carers. PwP living at home receive a large amount of care and support from informal carers whilst formal care was surprisingly low.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-care-needs-project-understanding-the-experience-of-people-with-parkinsons-in-institutional-care-and-understanding-the-care-needs-of-people-with-parkinsons/