Doctor's Reference Guide To Dietetics
Neurological diseases/disorders



Neurological Disorders


General information:

Neurological diseases and disorders that can lead to nutritional problems are:

  • traumatic brain injury
  • nontraumatic brain injury, such as cerebral infarction and cerebral hemorrhage
  • degenerative diseases of the central nervous system, such as Multiple Sclerosis, Parkinson disease, Huntington disease, dementia

The disorders listed above can lead to physical, cognitive and psychological problems in carrying out ADL (Activities of Daily Living), dependency on others, and problems eating and drinking. This puts the patient at risk of becoming malnourished. The risk is greater still if the patient has increased energy and/or protein requirements as a result of the illness. This is the case in patients with hyperkinesis and pressure ulcers.


Factors that can lead to malnourishment:

  • chewing and swallowing difficulties and impaired oral sensation
  • no longer being able to recognize food and drink
  • incorrect sitting posture and head position while eating and drinking
  • inadequate assistance in eating and drinking, or a lack of adequate utensils for the patient when he/she is eating or drinking without assistance
  • poor condition
  • fatigue
  • very high energy requirements
  • gastrointestinal disorders: gastroesophageal reflux, delayed gastric emptying, delayed intestinal motility
  • side effects of medications: dry mouth, changes in taste, nausea, vomiting, constipation
  • anorexia due to depression, shame about making a mess, self-neglect
  • pressure ulcers due to poor nutritional status and sensory impairment


Best time to refer to the dietician:

  • Diagnosis of neurological disorder combined with at least one of the following:
  • declining growth curve/ failure to thrive
  • when there is unintended weight loss of > 5% in a 1-month period or > 10% in a 6-month period and/or weight is too low (ages 18-65: BMI < 18.5 kg/m2 and > age 65 BMI < 20 kg/m2)
  • dysphagia
  • unwanted weight gain, unrestrained eating
  • if food with an altered consistency is necessary: ground-up food, puréed food or drip-feeds, or thickened liquids
  • if symptoms arise that are partly caused by the neurological disorder, such as reflux, delayed gastric emptying, constipation, loss of bone density, and pressure ulcers
  • if a patient or his/her family or caregiver has questions about (alternative) diets and/or would like advice and guidance with respect to diet or food-related topics, and wants to use nutritional and dietary aids (liquid meals, supplements, other preparations)
  • with use of Levodopa®, corticosteroids or other medications that influence nutrition


Relevant information for the dietician:

  • Diagnosis: type of neurological disorder, any comorbid conditions
  • Symptoms: anorexia, chewing or swallowing difficulties, reflux, unrestrained eating, constipation
  • Laboratory tests: vitamin and mineral status
  • Medication: Levodopa®, medication that can affect food consumption, medications prescribed for a comorbidity
  • Other: height, (changes in) weight, complications such as aspiration (pneumonia), fluid status, ethical aspects of starting tube feeding


Aims of the diet:

  • maintain/improve nutritional status
  • support the effect of Levodopa®
  • improve quality of life


Characteristics of the diet:

  • if necessary, modified consistency
  • pay attention to interactions between drugs and food (such as Levodopa®)
  • for constipation: see “Constipation”
  • for pressure ulcers: see “Pressure Ulcers”
  • for weight loss / malnutrition: see “Weight Loss / Malnutrition”
  • if overweight, see “Overweight”
  • for osteoporosis: see “Osteoporosis”


Treatment time:

  • Care level 3*, see “Dietician’s working methods.”


Specific remarks:

When the patient has difficulty swallowing, the dietician will need to work closely with the speech therapist (preferably in a swallowing team)

  • Cooperation with an occupational therapist is necessary if special eating and drinking utensils are needed.
  • It is not recommended to use drip feeds for dementia patients, due to the danger of aspiration.
  • It is of special importance to monitor the vitamin, mineral and fluid status of patients with dementia, because deficiencies can adversely affect the patient’s cognitive functioning.
  • A diet deficient in vitamin D and calcium in combination with little outdoor exposure and poor mobility can result in a low bone mass and, as a consequence, an increased risk of fractures.



Binsbergen JJ van, Kalmijn S, Ocke MC. Voeding en chronic ziekten. Utrecht: Van der Wees; 2001


Broekhoven-Grutters E, Gaasbeek D, Venninga-Baas M. Voeding en de ziekte van Huntington. Apeldoorn: Atlanta Zorggroep 2000


Dicke H. Voeding en de ziekte van Parkinson. In: Former M, Asseldonk GAEG et al, editors. Informatorium voor voeding en Diëtetiek. Houten: Bohn Stafleu van Loghum; 2004. p. Dieetleer X.1 - X.12


Genuchten S van. Voeding en dementie. In: Former M, Asseldonk GAEG, Duinen JJ van, Nuland R van, editors. Informatorium voor voeding en Diëtetiek. Houten: Bohn Stafleu van Loghum; 2008. p. Dieetleer: XV.1-XV.29


Kalf JG, Rood B et al. Slikproblemen bij volwassenen, een multidisciplinaire benadering. Houten: Bohn Stafleu van Loghum, 2008


Neurological Disorders was updated by Coby Wijnen, dietician associated with Vereniging Spierziekten Nederland (VSN), Dea Schröder-Van de Nieuwenhuizen, dietician at the

Het Roessingh rehabilitation center, writing also on behalf of the network of Diëtisten voor Spierziekten (DvS) and Heleen Dicke, dietician at Universitair Medisch Centrum Nijmegen



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Neuromuscular Disorders (NMD)


General information:

The nutritional issues associated with NMD can vary greatly. Dietary interventions range from supportive in nature to life-saving in the case of dysphagia or severe malnutrition. Dietary treatment guidelines have been developed for Amyotrophic Lateral Sclerosis (ALS), Progressive Spinal Muscular Atrophy (PSMA) and Duchenne muscular dystrophy (and other infantile and juvenile muscle diseases). Some NMDs involve respiratory dysfunction (without the presence of pulmonary disease) and/or cardiac problems. There may also be motility disorders of the smooth muscles of the gastrointestinal tract, particularly in myotonic dystrophy, myositis, mitochondrial disorders and Duchenne muscular dystrophy.


Best time to refer to the dietician:

  • for ALS/PSMA: immediately following diagnosis
  • for Duchenne: when corticosteroid treatment is initiated
  • for severely affected babies (floppy infant): often already prior to the diagnosis
  • when the diagnosis is NMD in combination with at least one of the following:
  • unwanted weight loss of > 5% within a 1-month period or > 10% within a 6-month period, unwanted weight loss with a low BMI (< 18.5 kg/m2) or with poor nutritional status. A low weight with little muscle mass elevates the risk of hypoglycemia.
  • scheduled surgery (e.g. scoliosis operation)
  • unwanted weight gain
  • metabolic syndrome
  • problems chewing due to overbite, limited mouth opening and/or muscle weakness in the lips, tongue and chewing muscles
  • dysphagia, with a risk of aspiration, malnutrition and dehydration
  • delayed esophageal motility, delayed gastric emptying, diarrhea due to bacterial overgrowh as a result of delayed motility of the small intestine, delayed motility of the large intestine (ileus, megacolon, pseudo-obstruction)
  • after tracheostomy
  • medical grounds for PEG or PRG placement
  • when there is progressive enteral feeding, due to cardiac problems (fluid) and refeeding syndrome
  • diabetes mellitus as primary or secondary result of NMD
  • osteoporosis
  • Additionally, for children:
  • declining growth curve: -0.5 to -1 SD in one year (<4 years of age), -0.25 SD in one year (>4 years of age)
  • weight-for-height -2 SDS
  • impaired bone building


Relevant information for the dietician:

  • Diagnosis: type of NMD, any comorbid conditions, planned surgery (e.g. scoliosis)
  • Symptoms: fatigue, weight loss, weight gain, problems chewing and swallowing, diarrhea, constipation, saliva and mucus problems, appetite, gastrointestinal problems, ADL dependency
  • Laboratory tests: along with other testing, check vitamin and mineral status
  • Medication: riluzole, corticosteroids, diuretics, amytriptyline (Tryptizol®), medication for a comorbidity, drugs in use in connection with clinical trials, nutritional supplements
  • Other height, (changes in) weight, fat-free mass index (FFMI), vital lung capacity, CO2 accumulation due to respiratory dysfunction, treatment of salivary glands, any alternative treatments.


Aims of the diet:

  • Regulate the intestinal function: fecal incontinence (primarily in the case of myotonic dystrophy), promote daily elimination when there is reduced respiratory function and when there is abdominal pain due to air from a respirator with a nose mask.

Floppy infant

  • reduce symptoms, primarily enteral nutrition through a nasogastric tube until the medical status improves or until death.

Children with fluctuating life expectancy, depending on the type of NMD

  • maintain/achieve a healthy growth curve/nutritional status
  • maintain/improve nutritional status
  • prevent deficiencies in protein and micronutrients when energy requirements are low
  • prevent/delay complications due to medication and immobility
  • reduce symptoms of dysphagia and dysmotility
  • prevent hypoglycemia when there is low body weight in combination with little muscle mass, fasting, disease and surgery (raw corn starch)
  • promote bone building
  • promote the use of eating utensils (in cooperation with an occupational therapist) and safe swallowing techniques (in cooperation with a speech therapist).

Adults with rapidly progressive NMD with greatly reduced life expectancy

  • maintain quality of life by targeting:
  • counseling on treatment options to prevent crisis situations (ethical option of tube feeding and/or artificial ventilation, based on the patient’s progress and desires)
  • reduce choking and aspiration
  • prevent catabolism
  • maintain/achieve as good a nutritional status as possible
  • promote defecation without disorders
  • reduce saliva and mucus problems

Adults with a slowly progressive NMD with more or less normal life expectancy, depending on the type of NMD

  • maintain/improve nutritional status
  • prevent unwanted weight loss and unwanted weight gain
  • prevent deficiencies when food consumption is low
  • reduce severity of dysphagia and dysmotility
  • promote daily defecation when there is respiratory dysfunction
  • reduce complications related to immobility
  • reduce symptoms when there is congestive heart failure


Characteristics of the diet

  • Follow national Nutritional Guidelines, paying extra attention to adequate intake of nutrients when there is a reduced energy requirement.
  • Energy: resting/basal metabolism (Schofield/Harris & Benedict) + extra allowances. If the nutritional status cannot be optimized with oral nutrition, dietetic preparations should be considered.
  • In the case of congestive heart failure, see “Congestive Heart Failure”


Treatment time:

  • Care level 3 (for slowly progressive NMD), see “Dietician’s working methods.”
  • Care level 5 (for rapidly progressive NMD, depending on progression and complexity), see “Dietician’s working methods.”


Specific remarks:

  • In general, the less physical activity, the lower the energy requirements. Some NMDs involve eventual immobility and ADL dependencies, such that the energy requirements are barely higher than the resting metabolism. Exceptions to this are ALS, in which a mild hypermetabolism is known to occur and the Guillain Barré syndrome with a strongly elevated hypermetabolism in the acute phase. For low energy requirement, deficiencies in micronutrients should be supplemented.
  • In general, there is no increased requirement for protein, because increase in muscle mass is usually not possible.
  • For rapidly progressive NMD, at the end stage of the disease the dietary fiber intake is limited due to poor conditioning, respiratory problems and diaphragm muscle weakness, and elimination is regulated with laxatives. Special attention should be given to the amount of drinking fluids when the patient has limited mobility and is wheelchair bound.
  • The BMI gives only a rough indication and is not validated for NMD, due to altered body composition with less fat-free mass and more fat mass.




Berg van den LH, Goeijen de JC, et al, editors. Amyotrofische Laterale Sclerose, diagnostiek en behandeling. Uitgave ALS-centrum, 2009


Jennekens FGI, Die-Smulder CEM de, et al, editors. Myotone dystrofie, begeleiding en behandeling. Elsevier Gezondheidszorg, Maarssen, 2000


Wang CH, Finkel RS et al. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol 2007; 22: 1027-49


Wijnen C. Amyotrofische Lateraal Sclerose (ALS), Duchenne spierdystrofie (en andere infantiele en juveniele-spierziekten). In: Handboek Dieetbehandelingsrichtlijnen, Maarssen: Elsevier gezondheidszorg; 2007/2009


Wijnen JC. Voeding en spierziekten In: Former M, Asseldonk GAEG et al, editors. Informatorium voor voeding en Diëtetiek., Houten: Bohn Stafleu van Loghum; 2004. p. Dieetleer XXII.1-XXII.27


Neuromuscular disorders was updated by Coby Wijnen, dietician associated with the Vereniging Spierziekten Nederland (VSN) and Dea Schröder-Van Nieuwenhuizen, dietician at the rehabilitation center Het Roessingh, writing also on behalf of the network of Diëtisten voor Spierziekten (DvS).


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