NDI Program Assignments
Huntington’s disease and Nutrition.
By: Mahamoudou Sare
CUNY Graduate School of Public Health and Health Policy
Dr. Ann Gaba
. Date:10/27/2017 Rotation: Medical nutrition therapy,
Location: 505 8th Avenue suite 902 New York NY 10018
Activities / Assignments: Information about Ayurvedic diet, Yoga, Lunch
Comments / Thoughts / What You Learned/ Challenges: The nutrition plan for HD is not well known. All Dietitians need to know more about this disease
Learning Objectives Met: How to plane a nutrition intervention for patient suffering from HD
The National Institute of Health (NIH), defines Huntington Disease (HD) as an inherited disorder that causes progressive degeneration of brain cells called neurons which control the motor region of the brain and many others areas. The disease usually begins between age 30 and 50 years old, but an earlier form called juvenile HD can start before 20 years of age. As the symptom of the disease gets worse, the patient loses his movement abilities. Patient can also experience changes of behavior, emotion, judgment, and cognition (NIH,2017)
According to the same document, in its progression, the HD not only take away the patient’s ability to walk and talk, but also the ability of swallowing which is very fundamental for his or her nutritional status. The etiology of the disease is also very complex. As per the NIH (2017), this disease can cause, clumsiness, physical imbalance, and partial or total loss of memory. The degradation of movements’ coordination, slurred speech are also part of the HD symptoms (National Institute of Neurological Disorders and Stroke, 2017). The same document revels that more than 30, 000 Americans are suffering from the disease.
In general, the management of chronic diseases need nutritional approaches as well as the need for medication. Consequently, the need for nutrition expertise is more than welcome in the management of HD. The Care for a patient with HD needs many nutritional approaches. The knowledge of therapeutic diet exclusively designed for management of HD patients is very important for care giver of patients suffering from this disease because of the progressive deterioration of the patient’s self-feeding abilities.
According to the Nutrition Care Manuel (2017), the Nutritional Diagnosis should be done based on signs and symptoms gadder from the patient total assessment. The following list of diagnoses are mostly seen in patients with HD: Increased energy expenditure, Inadequate energy intake, Inadequate oral intake, Swallowing difficulty, Food-medication interaction, Underweight, Impaired weight loss and Impaired ability to prepare foods. Using these above diagnosis, the following nutritional assessment can be expressed.
-Inadequate oral intake related to swallowing difficulty and choking as evidenced by consumption of about 50% of food served on regular diet.
-Inadequate energy intake related to increased energy expenditure with tremors as evidenced by weight loss while consuming usual amount of food.
Based on these nutrition diagnosis, to satisfy the nutritional need of a Huntington Disease patient is very complex because of the rapid degeneration of the patient ability to care for himself. The nutritional intervention for a patient with HD should be based on educated set of goals. As per the Nutritional Care Manual (2017), if these goals are well established, the following interventions can be made.
-evaluate food and nutrient intake as needed and make adjustments to meet estimated energy needs.
-provide supplements, food fortifiers, thickeners, or other products as needed.
-discuss alternative feeding as necessary.
-educate patient or caregivers according to identified needs
-Note arrangements for follow-up and for more evaluation.
-monitor tolerance to any interventions and adjust as needed
Therefore, the work of the dietitian is not only providing the right nutrition based on the patient’s condition, but also the right feeding method. According to the (Nutritional Care Manuel, 2017), for people with Huntington’s disease, weight loss prevention is a key, because the lost of appetite make the patient insensible to hunger. Consequently, the patient food intake may be less than his needs and he can start losing weight. Thus, the dietitian needs to provide to the patient smaller portions of food 6 times a day instated of 3 as usual, along with snacks (candy, cheese, cookies, ice cream, sandwiches, or mini-pizzas).
Also, the caregiver, should provide enough fluid which can be supplement, shake, coffee or tea (with whole milk or cream for extra calories) between meals. Beverage without calories such us diet soft drinks or seltzer should be avoided. Food items like fruits, avocado with salads, cakes, eggs, chicken salads, pies, sauces and gravies add to meat and potatoes can be used between meals for extra calories. These extra calories can be used for weight management due to the multifaceted nature of neurologic disorders and many other factors such as apraxia (the inability to carry out purposeful movement), agnosia (the ability to recognize the significance of sensory stimuli), and hyperoralia (need for oral stimulation that causes continued chewing). These conditions can be seen in the latest stages of HD (Nutritional Care Manuel, 2017).
Among these perplex condition, the HD patient may also try to bite utensils, refuse to open his or her mouth, reject food, swallow without chewing and change his food preference very frequently. In the case where the patient’s swallowing ability is lost, tube feeding will be the only alternative support because of the high need of calories. According to the Nutritional Care Manual (2017), Enteral or Tube Feeding is the only approach to meet energy requirement, when swallow ability is totally lost.
U.S. National Library of Medicine 8600 Rockville Pike, Bethesda, MD 20894 U.S. Department of Health and Human Services National Institutes of Health
Page last updated on 13 September 2017 Topic last reviewed: 30 August 2017