Objective: The purpose of this study is to better understand the amount of caffeine consumption in people with HD and the subjective motivations and consequences of caffeine use from the perspectives of the HD patient and family.

Background: Anecdotally, clinicians have noticed increased amounts of caffeine consumption in the HD population. This can seem paradoxical as the disease itself makes people irritable and hyperactive, and caffeine may exacerbate this emotional and physical hyperactivity. One small retrospective analysis of patients with HD demonstrated that caffeine consumption of greater than 190 grams per day was associated with earlier onset of HD symptoms. However, to date, there have been very limited analyses of caffeine intake in HD patients.

Method: Thirty adult participants from a single HD center were surveyed about details of their daily caffeine intake, impact on HD symptoms, and motivations for caffeine consumption using a multiple choice and free response questionnaire – with some input from accompanying family members. Descriptive statistics were used to report survey findings and compare the sample’s caffeine consumption to that of the general U.S. population by age using a nationally representative database of 37,602 individuals who completed the Kantar Beverages Consumption Panel.

Results: Twenty-one of the thirty participants had higher daily caffeine consumption compared to the general population by age group. Of these participants, 19% thought that they should cut down on caffeine. The most commonly cited motivations for caffeine use were taste (100%) and extra energy (67%). The range of caffeine intake per day for the cohort was 0 to 1400.4 mg per day with a median of 273.2 mg per day and mean of 382.5 mg per day. Only 5 of the 30 participants with HD and 8 of the 29 accompanying family members thought that caffeine affected HD symptoms; anxiety was the most commonly affected symptom, with reports of both improvement and worsening with caffeine use.

Conclusion: People with HD tend to consume more caffeine than the U.S. population average, but contrary to the hypothesis, HD patients and families do not tend to report a significant worsening in HD symptoms with higher caffeine intake. Future investigations into this association including the clinician perspective and the impact of anosognosia on participant reporting can help us better understand this association and inform the counseling of HD patients and families.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/understanding-caffeine-consumption-in-huntingtons-disease/