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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. 

What’s new?

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.

What’s next?

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. 


Funding: This research was supported  by NIHR University College London Hospitals Biomedical Research Centre and the European Commission (Joint Programme - Neurodegenerative Disease Research). 

Conflicts of Interest: The authors have declared that no competing interests exist.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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Study author

The study highlighted the need to provide more personalised, joined-up services for people with Parkinson’s. It brought home to us the importance for this group of people of maintaining identity and as much normality as possible, despite all the limitations imposed by having Parkinson’s.Healthcare structures need to be more flexible and patient-centred, with continuity of care and support of carers to facilitate this. There’s a need for better information provision and discussion to empower people with Parkinson’s to maintain control and make knowledgeable, positive decisions about the future.Anette Schrag, Professor of Clinical Neurosciences, UCL Queen Square Institute of Neurology

Lived experience

The research will contribute to formulating the model of care going forward. Importantly, this study identifies an area of unmet need around planning for the future and this needs to be investigated further. Relevant charities could explore the meaning of a 'good death' and a 'good decline', while recognising that people with Parkinson’s are hoping for a cure.Further work is needed on the details of the proposed organisational structure. For example, how would the funding model prevent it becoming inefficient and fragmented? What role could digital support or telemedicine play?There needs to be an overarching project to address policy development and the related programmes necessary to implementing care in the community.Michelle, diagnosed with Parkinson’s in 2015

Specialist nurse

In my experience, people with advanced Parkinson's frequently do not receive the personalised care they need. As their symptoms advance, they have an altered response to medication and cognition problems start to develop. They and their family become unable to attend specialist outpatient clinics. They are often cared for in non-specialised settings when they really need experts to manage their complex and challenging needs.The need for a clear pathway and communication, perhaps using virtual health technology to optimise function and manage symptoms would help people and their families achieve their goals. Without this, they are at risk of distress, inappropriate management and carer fatigue. Advanced care planning is essential to ensure that people with Parkinson's are fully involved in all decisions about their care.Patsy Cotton, Advanced Nurse Practitioner Parkinson/Movement disorders, NHS Greater Manchester Neurosciences Centre

Parkinson's UK

We know that there are still improvements to be made when it comes to the care needs of those with advanced Parkinson's and the results from this research also show this. Parkinson's is a serious condition with more than 40 symptoms and those with advanced Parkinson's usually require more care because their symptoms are complex.In the most recent UK Parkinson’s Audit, the largest dataset obtained to date on the quality of care provided to people with Parkinson’s across the UK, we found only 36.9% of people with advanced Parkinson's were recorded as having had a discussion regarding end of life care. This raises additional questions of whether advanced Parkinson’s is sufficiently well recognised, and whether appropriate conversations regarding end-of-life care are started early enough.Katherine French, Service Improvement Programme Manager, Parkinson's UK
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