People with late-stage Parkinson’s disease have complex, unmet needs, but their voices are often not heard, say researchers. One-on-one interviews revealed that people in this group need more flexible, personalised care at home and in the community to help them manage their symptoms and maintain control over their condition.
The research also highlights the need to provide personalised information to people with Parkinson’s – and their families – to empower them in their decision-making and planning.
What’s the issue?
In the UK, one in 50 people over the age of 65 have Parkinson’s disease or parkinsonism, which has similar symptoms such as tremors and slow movement. The number is expected to double by 2030.
People in the late stages of Parkinson’s disease have symptoms that can affect physical functioning, behaviour, and cognitive ability. This progressive, life-limiting disability requires complex treatment and increasing reliance on health and social services. Additional age-related illnesses are common in these elderly patients, and as a result, this group requires long-term, multiagency health and social care to address their symptoms, support day-to-day activities and improve quality of life.
Patients’ perspectives on their disease, its impact on their lives, what matters most to them and their experiences of healthcare structures receive too little attention. Those in the later stages of Parkinson’s, when disability is greatest and communication most difficult, are least likely to be heard.
Greater knowledge of the needs of people with late-stage Parkinson’s would minimise the direct and indirect impact on them, their families, the healthcare system, and social services. Health and care costs for people in the last years and months of life with Parkinson’s are known to be higher than average. Effective planning of systems and services could reduce the growing demand on public funds.
Ten patients with Parkinson’s were recruited from the European Care of Late-Stage Parkinsonism (CLaSP) research project. They were aged between 70 – 88 and were in the late stages of the disease. They had severe restrictions on their mobility, and varying degrees of neuropsychiatric and cognitive symptoms and abilities to communicate.
Interviews were carried out in patients’ homes. They were conversational and based on open-ended questions. The themes that emerged were:
- with increasing disability, hospital-based appointments were felt to be difficult to access, and of limited benefit, but participants had mixed experiences of care provision in the community.
- family caregivers, mainly spouses and children, had a central role in care at home, with tasks including bathing, dressing, and giving medication. This replaced or was in addition to scheduled visits of formal care-workers.
- services provided were often variable and not flexible enough to address individuals’ needs.
- it was important to participants to keep their sense of self and normality in the face of physical and cognitive disability and unpredictable circumstances. Personalised information helped patients in decision-making and maximising their autonomy.
- participants were ambivalent about planning for the future and reluctant to discuss end-of-life care. Current care structures did not appear to encourage discussion of future living arrangements.
Why is this important?
This study reveals unmet needs among those in the late stages of Parkinson’s and their families. These issues are likely to apply in other chronic progressive neurological disorders such as dementia.
The shift from hospital care to community services is complicated in England by the separation in social care and healthcare funding, and the separation in organisation of different service providers. This research underlines problems with this model.
The research demonstrates the importance of Parkinson’s Disease Nurse Specialists in caring for patients in their homes by expertly managing symptoms, providing personalised information and a link to hospital services, and offering emotional support. It highlights the importance of finding better ways of managing and living with deterioration and eventually planning end of life care. In parallel, informal caregivers could be better supported to help people with late-stage Parkinson’s retain their sense of self, maintain day-to-day life, and allow them to stay in their own homes for longer.
The authors suggest that healthcare commissioned for people with Parkinson’s should focus on the individual’s needs, and include:
- more flexible appointments and responsive healthcare structures
- more joined-up services
- improved availability of individualised, specialist, home-based services, following the transition to care in the community
- better and more personalised information about Parkinson’s and its implications for healthcare professionals, people with Parkinson’s, and their carers
- care which aims to preserve autonomy and identity
- more support for family caregivers
- earlier discussion of, and access to, palliative care options.
These needs could be addressed by introducing a clear, personalised care plan for each person with Parkinson’s. The next step is to demonstrate that these suggestions are both helpful and cost-effective, through further research into novel care structures.
You may be interested to read
The full paper: Read J, and others. Experiences of health services and unmet care needs of people with late-stage Parkinson’s in England: A qualitative study. PLoS ONE 2019;14:e0226916.
Information from Parkinson’s UK on supporting and living with Parkinson’s
A review on end of life care for Parkinson’s disease patients: Oliver D, and others. Specialist palliative care for Parkinson’s disease. Annals of Palliative Medicine 2020;9:S52-S62.
Conflict of interest
The authors have declared that no competing interests exist.
This research was supported by NIHR University College London Hospitals Biomedical Research Centre and the European Commission (Joint Programme – Neurodegenerative Disease Research).