Perceptions of Healthy Eating and Promoting Food-Related Independence in People with Parkinson Disease: Acknowledging the Gaps, Barriers, and Facilitators
By Christine C. Ferguson
Healthcare practitioners and researchers working with older adults with Parkinson disease should develop an understanding of their lived experiences beyond their medical diagnosis. Their lived experiences ties into their overall health and well-being. From a nutrition perspective, a person’s ability to independently perform food-related activities (i.e., planning, preparing, and shopping for meals) may influence their diet quality that, in turn, may influence their symptom severity and disease progression. It’s commonly said that “not one Parkinson’s patient is like another,” which further emphasizes the importance of understanding the internal and external complexities that influences their day-to-day activities, such as with food-related activities.
Our study went in-depth on this topic by interviewing people with Parkinson disease and their care-partners about their perceptions and experiences with food-related activities. We asked not only about their individual abilities to carry out these tasks, but we also asked about their support system, what influences their food-related decisions, their perceptions regarding what is considered “healthy,” and their knowledge on nutrition as it relates to Parkinson disease. Our interviews revealed both consistent and inconsistent findings among our participants. First, perceptions of a healthy diet varied among participants as it relates to diet composition as well as how the diet influences their symptoms. Some participants believed limiting certain food groups is necessary (grains, carbohydrates, dairy, sugar, meat). Previous research has shown that a common active ingredient in Parkinson’s medications, levodopa, negatively interacts with protein in foods. Some participants were aware of this interaction, but many were not aware.
When asked about their prior sources of nutrition information, participants shared that they received information from a variety of sources including their neurologist, websites, books, and support groups, which likely contributes to the mixed responses about what a healthy diet includes. Not many participants have met with a Registered Dietitian, but all were willing to meet with one. Participants shared different levels of confidence in following a healthy diet, which highlights an opportunity for practitioners to refer more Parkinson’s patients to a Registered Dietitian.
Participants discussed their experiences related to barriers and facilitators to performing the skills required to complete food-related activities. Participants noted common barriers including needing assistance with chopping food with knives and other tasks with food preparation. All participants had a care-partner who joined them for their interview, and most stated that their support from the care-partner was important to completing any task related to cooking or shopping. Another strategy shared by participants was that they kept their meals as simple as possible as well as incorporating adapted kitchen utensils (e.g., vegetable chopper) to make the food preparation process easier.
While this study provides an insight into the perceptions and experiences of older adults with Parkinson disease, there are clear gaps and opportunities for nutrition research to clarify diet recommendations for this population and how to best provide supportive resources for those experiencing barriers to independently performing food-related activities.
Article details
A Qualitative Analysis of Experiences With Food-Related Activities Among People Living With Parkinson Disease and Their Care-Partners
Christine C. Ferguson, Seung Eun Jung, Jeannine C. Lawrence, Joy W. Douglas, Anne Halli-Tierney, Chuong Bui, & Amy C. Ellis
First Published: September 3, 2022
DOI: 10.1177/07334648221118358
Journal of Applied Gerontology
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