Health Care for Adults with Developmental Delay

Aka: Health Care for Adults with Developmental Delay, Developmental Disorder in Adults, Mental Retardation in Adults and their Medical Care, Mental Retardation, Intellectual Disability

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II. Definitions

  1. Developmental Disorder
    1. Examples: Cerebral Palsy, Intellectual Disability, Autism
    2. Significant functional deficits in 3 major life activities (e.g. self-care, language, learning)
    3. Previously defined as IQ <70

III. Epidemiology

  1. Life Expectancy of those with Developmental Delay now approaches the rest of the population

IV. Associated Conditions: Physical

  1. Poor Dental Hygiene (recommend regular dental care)
    1. Supporters should stand behind patient when providing oral care
      1. Patients head should back and turned to side (protects airway)
    2. Consider using bite block for oral cares
    3. Adaptive Tooth Brushes
    4. Xylitol gum or spray
    5. Water pic with suction
    6. Peridex rinses
    7. Rinse residual food with water after eating
    8. Decrease sugars and acidic foods in diet
  2. Skin Breakdown (e.g. Pressure Ulcers)
    1. Observe perineum and decubitus areas
    2. Customize Wheelchair seating
    3. Consider pressure-reducing mattress
    4. Treat rashes early (remove pressure, maceration)
    5. Manage Excessive Salivation
    6. Replace picking behaviors and distract from boredom and anxiety
  3. Sleep Apnea
  4. Methicillin-resistant Staphylococcus aureus
    1. Associated with PEG or tracheotomy sites
  5. Aspiration
    1. Consider checking Pulse Oximetry with feedings
    2. Consider speech pathology evaluation to assess Swallowing and direct food consistency
    3. Keep upright position
  6. Gastroesophageal Reflux disease
    1. May present as cough
    2. Treat to reduce tooth enamel erosion
  7. Constipation and Fecal Impaction
    1. Maintain bowel regimen to prevent Constipation
    2. Review adequate fiber and fluid intake
    3. Reconsider Medication Causes of Constipation
    4. Encourage positioning for better bowel function (valsalva)
      1. Nose, Umbilicus and knees face the same direction
    5. Encourage activity even in Wheelchair (e.g. passive knee to chest range of motion)
  8. Pelvic Pain in women
    1. Control Dysmenorrhea (signalled by behavior change)
    2. Consider STD or pregnancy
  9. Seizures
    1. Differentiate from extrapyramidal drug effects
  10. Neuromuscular Scoliosis, Contractures, Spasticity
    1. Consult with orthopedics and physical therapy
    2. Encourage strength and flexibility Exercises
    3. Consider occult spinal cord or Peripheral Nerve compression
  11. Osteoporosis or fragility
    1. Evaluate for occult Fractures (may be easily missed if nonverbal)
    2. Consider Osteoporosis Prevention with Calcium and Vitamin D Supplementation
  12. Musculoskeletal
    1. Lift from patient's core (not extremities)
    2. Consider Osteoarthritis
  13. Cognitive decline
    1. Consider Dementia
    2. Consider Dementia Causes and Delirium including medications and comorbid conditions
  14. Respiratory conditions (e.g. COPD, Asthma)
    1. Consider nebulizer if unable to use MDI

V. Associated Conditions: Behavioral

  1. Precautions
    1. New behaviors may be due to stress, pain, anger, fear...
    2. Benzodiazepines may exacerbate in 10% of cases
  2. Carefully evaluate for cause
    1. Abuse or neglect
    2. Dental Caries
    3. Ureterolithiais
    4. Biliary Colic
    5. Constipation or Urinary Retention
    6. Polypharmacy
    7. Chemical Dependency (e.g. Drug Abuse, alchol abuse)
    8. Occult Fractures
    9. Seizures
  3. Common behaviors
    1. Sexually offending behavior
    2. Self-injury (e.g. head-banging)
    3. Aggressive behavior
    4. Insomnia or other sleep problems
    5. Hyperactivity
    6. Repetitive behaviors

VI. Management: General Approach

  1. Neurodiversity model
    1. Use the patient's most effective skills in a given area (e.g. communication)
    2. Use pictures or computer keyboard to communicate
    3. Contrast with treating the underlying deficit (e.g. speech pathology in Dysarthria)
  2. Focus on accommodations that allow for quality living in their own home or community
    1. Housing modifications
    2. Adaptive equipment
    3. Disability services
  3. Supported decision making
    1. Contrast to guardian or power of attorney
    2. Instead, patient retains decision making and chooses the supporters they trust to help with decisions
  4. Document baseline functional capacity at initial presentation
    1. Cognition
    2. Communication
    3. Neuromuscular function
    4. Vision
    5. Hearing
  5. ' Sensory processing
    1. Seizure threshold
    2. Mental Health
    3. Behavior
  6. Renew outdated referrals (e.g. OT, PT, speech, educational or vocational services)

VII. Management: General Measures to Assist Appointment

  1. Person well known to patient should accompany them
  2. Brief social visits can desensitize patient to office
  3. Talk the patient through examination
    1. Uncontrolled movements may be mistaken for an inability to communicate
  4. Communicate directly with patient (use plain language, pictures, large print)
    1. Start by assuming that the patient can make decisions and participate with their own care
    2. Avoid "infantilizing" language or tone; use a normal adult voice when communicating
    3. How do you say yes? How do you say no?
    4. I see you hitting your head. Does something bother you?
    5. Do you have pain?
    6. Do you have sex? With men, women or both?
    7. Can I ask you supporter for some additional information that I need?
  5. When supporters are the source of information
    1. How do you know these patient concerns?
    2. Did you ask the patient about this?
  6. Engage the patient in decision making
  7. Do not make assumptions about sexual activity or the need for genitourinary examination and STD testing
    1. Ask about sexual activity
  8. Allow patients to choose what help they need in moving about the examination area
    1. Do they need assistance in transfering?
    2. Avoid defering examination due to personal assistive equipment
    3. Treat the patient's personal assistive equipment as their own personal space
      1. Obtain the patient's consent to move or control these items
  9. Allow for longer appointment and reduce waiting as much as possible
  10. Decrease background noise and alarms, and decrease bright lights
  11. Consider Ativan 1-2 mg taken 2 hours before appointment
  12. Consider medical office adaptive equipment
    1. Wheelchair scales
    2. High-Low exam tables

VIII. References

  1. Kripke (2018) Am Fam Physician 97(10): 649-56 [PubMed]
  2. Prater (2006) Am Fam Physician 73(12):2175-83 [PubMed]

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