Introduction     The life expectancy for adults with intellectual and developmental disabilities (IDD) is now within 5 years of the general population.  This has resulted in an increased frequency of death from age related illnesses such as cancer, heart disease, and chronic lung disease.  This Fast Fact will review special issues in the care of people with IDD and life-limiting diseases.  Fast Fact #193 will discuss decision making around life-threatening diseases for adults with IDD.

Background     Intellectual and developmental disabilities are defined as physical or mental impairment occurring before age 18. Examples include people living with Down syndrome, and cerebral palsy associated mental retardation.  During the past decades there has been a move towards decreased institutionalization and a 3-fold increase in community living. Home care is often provided by elderly parents.  Community housing may be supervised by individuals with little familiarity with the patient.

Barriers to medical and palliative care for adults with IDD include persistent challenges in symptom assessment, communication, and access to appropriate services 

• Suboptimal nutrition, limited exercise, decreased utilization of health screening often negatively impacts the health of people with IDD.
• Communication barriers can lead to more advanced illness presentation.
• Lack of clarity of goals of care and poorly defined decision-makers (see Fast Fact #193).
• No evidence that people with IDD have less need for information about illness, dying, or death, though they may be less likely to ask questions and initiate conversations.
• People with IDD may not be allowed appropriate bereavement:
  • Deprived of the knowledge of death of their caregivers and loved ones.
  • Excluded from funerals, memorial services, or other bereavement activities.
• Some patients with IDD have a difficult time with abstract concepts such as death, treatment options, and informed consent.
  • May interpret illness or treatments as punishment for wrong doing. 
  • May not understand why their family/caregivers are sad around them.
• Symptom assessment may be compromised by difficulty with communication:
  • Individuals demonstrate a wide range of behaviors that may indicate discomfort, some of which may be subtle and only apparent to people who know them well, if at all.
  • Signs of pain, and psychological and emotional distress, may be apparent even though it is unclear what is causing them: pain, other somatic symptoms, anxiety/fear, sadness?

Providing effective palliative and supportive care to adults with DD 

• Work closely with caregivers to maximize time in familiar surroundings and with familiar people and objects, to identify routines and enjoyable activities, and to offer emotional reassurance.
• Communication
  • Focus on more concrete items that are easier to understand for the patient, like symptoms, as opposed to abstract diseases.
  • “Books Beyond Words” is a UK based charity which publishes a variety of books for adults with IDD about medical and social illness, including dying and grief (https://www.booksbeyondwords.co.uk/).
  • Allow extra time and ask how much information someone is interested in having.
• Symptom assessment and management (see also Fast Fact #126).
  • Symptom assessment needs to be individualized to the patient, based on the experience of the closest caregivers.
  • Three main indicators of pain among people with IDD include aggression, restlessness, and changes in speech.
  • The Disability Distress Assessment Tool can help clinicians and caregivers identify, communicate, and document an individual’s signs of distress and contentment (3,4).
  • The Abbey scale can be used to measure nonverbal expressions.
  • Two other tools include the Planning Ahead to Manage Pain and Distress Confidently Checklist and the Non-Communicating Adult Pain Checklist.
  • Symptom management should focus on careful examination of patterns of distress, a thorough physical examination, judicious use of diagnostic testing, and empiric use of comfort medications based on what is felt to be the most likely cause.
  • Trial and error, with constant monitoring of adverse medication effects, is often necessary.

References 

1. Read S. Learning Disabilities and Palliative Care: Recognizing Pitfalls and Exploring Potential.    Intl J Palliat Nurs. 2003; 11:15-20.
2. Tuffrey-Wijne I. The palliative care needs of people with intellectual disabilities: a literature review.  Palliat Med. 2003; 17:55-62.
3. Regnard C, Reynolds J, Watson B, et al. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT).  J Intellect Disability Res. 2007;51:277-292.
4. Sue K, Mazzotta P, Grier E. Palliative care for patients with communication and cognitive difficulties. Can Fam Physician. 2019 Apr;65(Suppl 1):S19-S24.
5. Moore et al. Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities. Journal of Palliative Medicine, 2022-12, Vol.25 (12), p. 1857-1864.
6. Tolchin et al. Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People with Disabilities. Journal of Palliative Medicine, 2024-08, Vol.27 (8), p. 164-1073.
7. Sue K and Mar N. Attitudes on Palliative Care for Adults with Developmental Disabilities. Journal of Palliative Medicine, 2021-03, Vol.24 (3), p. 391-396.

Version History:  Originally published November 2007.  Version re-copy-edited in May 2009; then again July 2015; revised again in October 2025 with original contributions by Jessica Greupner MD.