Objective: Informal carers of people with Parkinson’s (PwP) can undertake multiple roles, including personal, emotional, financial, or household tasks [1] increasing as the condition progresses. This paper will present evidence that where Parkinson’s Nurse Specialists (PNS) include carers, there is a protective effect on their health and well-being, and care to PwP is improved.

Background: Parkinson’s is the second most common neurodegenerative condition in the UK, affecting around 145,519 people [2]. It is a complex, progressive condition, often resulting in motor impairments (e.g., movement and mobility problems) and non-motor symptoms (e.g., sleep problems, cognitive impairment, depression, and constipation) [3]. As symptoms progress, PwP can require increasing support from their informal carers to help maintain a reasonable quality of life (QoL), this places high demands on the carer impacting on them and their ability to care [4]. Predicators of hospital admission for PwP include poorer cognition, more nonmotor symptoms, poorer quality of life, slower timed-up-and-go test scores, and abnormal swallow [5].

Method: Realist approaches explain how/why programmes work (or not) through asking: what works, for whom and under what circumstances[7] USP included four phases: (1) developing resource sensitive initial programme theories (IPTs) and surveys to understand costs and benefits of PNSs; (2) testing IPTs in qualitative interviews; (3) evaluating the costs, resources, and benefits, and (4) refining the IPTs. USP explains how PNSs work in the UK, what impact they have, and at what cost. [8] 1232 participants contributed to the survey stage and 45 participants were recruited through a stratified random sample to the in-depth interview stage.

Results: Where PNS include informal carers, encouraging them to attend appointments and providing communication access to share information and discuss medication and symptom management, caregiver strain is relieved and disclosure of PwP current condition is improved. When this was most successful, carers felt they were ‘in it together’, ‘sharing responsibility’ for care with nurses.

Conclusion: Positive and active inclusion of PwP’s informal carers by PNS allows for the development of a ‘partnership’ approach to care. This approach reduces caregiver strain and improves care, reducing potential for hospital admission.

References: [1] Wanless, D., Forder, J., Fernandez, J.-L., Poole, T., Beesley, L., Henwood, M., & Moscone, F. (2006). Wanless social care review: Securing good care for older people, taking a long-term view, London: King’s Fund. [2] Parkinson’s UK. The incidence and prevalence of Parkinson’s in the UK. 2018 12th November]; Available from: https://www.parkinsons.org.uk/professionals/resources/incidence-and-prevalence-parkinsons-uk-report. [3] D’Amelio, M., et al., Predictors of caregiver burden in partners of patients with Parkinson’s disease. Neurol Sci, 2009. 30(2): p. 171-4. [4] Hand, A., Oates, L. L., Gray, W, K., & Walker, R. W. (2019). The role and profile of the informal carer in meeting the needs of people with advancing Parkinson’s disease, Aging & Mental Health, 23:3, 337-344, DOI: 10.1080/13607863.2017.1421612 [5] Sebastian, R., Gray, W. K., Foley, A., Trendall, L., Oh, D., Hand, A., Dodds, S., McClenaghan, E., Santos, V. D., Oates, L. L., Fisher, J., & Walker, R. W. (2020). What Predicts Hospital Admissions in Community-Dwelling People With Parkinsonism? Journal of Geriatric Psychiatry and Neurology, 33(2), 103–108. DOI: 10.1177/0891988719868309 [6] Pawson, R. and N. Tilley. (1997). Realistic Evaluation. London: Sage. [7] Brown, S., Dalkin, S., Bate, A., Bradford, R., Allen, C., Brittain, K., Clarke, A., & Hand, A. (2020). Exploring and understanding the scope and value of the Parkinson’s nurse in the UK (The USP Project): a realist economic evaluation protocol. BMJ Open, 10(10), [e037224]. https://doi.org/10.1136/bmjopen-2020-037224

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