A Missing Piece of the Parkinson’s Puzzle: The Critical Role of the Dietitian in the care of People with Parkinson’s Disease

The results of a national survey on the ‘Experiences of health service access and use for people living with to Parkinson’s disease’ in Ireland reported a severe lack of access to allied therapies with access to Dietetic therapy being one of the worst.

Only 15% of the 1402 people with Parkinson’s (PwP) who responded to the survey had access to a dietitian (1). A Belgian study of 82 PwP showed that only 11% of patients had ever seen a Dietitian with only 3% seeing a dietitian on an ongoing basis (2).

There are misconceptions that nutrition only comes into play in the mid to late stage of PD and that it is only important in older people. In fact, nutrition plays a major role in the journey from diagnosis, regardless of age, to the end stage for the PwP, their care partners and family.

As a Dietitian living with PD I have been campaigning for better nutritional care for PwP, a major focus of my role as a WPC Ambassador for Barcelona. I was involved in running 3 focus groups for PwP this year and the results were sobering. When we asked the participants ‘What has been your experience of getting advice on diet and nutrition from the health services?’ The key points raised during the discussion included:

• Lack of understanding of importance of diet on Parkinson’s by neurologists
• Complete lack of resources for people living with Parkinson's
• Lack of knowledge by dietitians on specific needs for people with Parkinson's
• Lack of referral to a Dietitian

Some participant quotes…

‘It was really demoralizing when I asked about nutritional support’;

‘The total extent of my nutritional advice was to move more and eat healthy’

Dietetic intervention is multifaceted (Figure 1) and can impact on non-motor symptoms such as constipation, weight, sarcopenia, dehydration, bone health and dysphagia, all of which have a significant impact on quality of life and mortality (3).

Dietitians provide personalized guidance regarding diet, supplements, and food-drug interactions all within a cultural context. As a critical member of the multi-disciplinary team, Dietitians can alert team members to safety issues such as weight loss, swallow, or food addiction issues. They are specifically trained to facilitate behaviour change through lifestyle modification.

As improved nutritional status is related to improved quality of life in PD, we propose the Dietitian as a critical piece of the puzzle that has until this point in time been underutilized in the management of PD.

Improving access to Dietitians may help dramatically improve the quality of life for PWP, their care partners and families. There is a dire need for dietary intervention research and universal up to date dietetic evidence-based guidelines for PD. We propose a call to action to improve the nutritional care of PwP:

1. O’Shea E, Rukundo A, Bennett K, Foley G, Wilkinson T, Timmons S (2023) Experiences of Health Service Access and Use for People Living with Parkinson’s Disease in Ireland: A National Survey. Health & Social Care in the Community.

2. Baert, F., Matthys, C., Mellaerts, R., Lemaître, D., Vlaemynck, G., & Foulon, V. (2020). Dietary Intake of Parkinson's Disease Patients. Frontiers in nutrition, 7, 105.

3. Ó Breasail M, Smith MD, Tenison E, Henderson EJ, Lithander FE. (2022) Parkinson's disease: the nutrition perspective - Proc Nutr Soc. Feb 4:1.

Richelle Flanagan is a WPC Ambassador, a Registered Dietitian and Co-Founder My Moves Matter.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®