Aging with Intellectual and Developmental Disabilities

  • Kerry Boyd
  • Veronique Baril


Persons with intellectual and developmental disabilities have more than average health problems throughout their lifespan, and yet they experience significant barriers to healthcare that meets their needs. One of the surmountable barriers is medical and allied health practitioner inexperience. The purpose of this chapter is to educate and empower medical professionals to address the needs of aging individuals diagnosed with intellectual and developmental disabilities. Intellectual and developmental disabilities encompass a heterogeneous population. This chapter addresses age-related issues pertinent to those diagnosed with intellectual and developmental disabilities such as intellectual disability and autism spectrum disorder. Changes in diagnostic criteria, terms, and trends over time have influenced how people with intellectual and developmental disabilities have been labeled and where they access care. Despite the heterogeneity of etiologies, presentations, comorbidities, and social contexts, there are common considerations for those aging with intellectual and developmental disabilities. Biopsychosocial models of care are particularly vital for individuals who present with complex presentations and backgrounds of varying physical, medical, and neuropsychiatric (including cognitive, mood, anxiety, and language) concerns. A systematic approach with an emphasis on patient-centered management will be illustrated with two case examples (woman with Down syndrome and gentleman with an autism spectrum disorder). Tools and resources are provided to guide and augment practice for patients aging with intellectual and developmental disabilities.


Aging Intellectual and developmental disabilities Autism spectrum disorder Biopsychosocial approach Communicate CARE HELP framework 



Grateful acknowledgment goes to the many living with developmental and intellectual disabilities who have so much to teach. Sincere appreciation is extended to Dr. Elspeth Bradley for generously sharing her clinical wisdom, the HELP framework, and time to review this chapter.


  1. 1.
    American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington: American Psychiatric Publishing; 2013.CrossRefGoogle Scholar
  2. 2.
    World Health Organization. ICD-10 Classifications Mental and Behavior Disorder: Clinical Description and Diagnostic Guidelines. Geneva: World Health Organization; 1992.Google Scholar
  3. 3.
    Eyman KR, Grossman JH, Chaney HR, Call LT. The life expectancy of profoundly handicapped people with mental retardation. N Engl J Med. 1990;323:584–9.CrossRefPubMedGoogle Scholar
  4. 4.
    Kanner L. Autistic disturbances of affective contact. Nerv Child. 1943;2:217–50.Google Scholar
  5. 5.
    American Psychiatric Association. Diagnostic and statistical manual of mental disorders (2nd ed.). Washington, DC: American Psychiatric Publishing; 1968.Google Scholar
  6. 6.
    American Psychiatric Association. Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: American Psychiatric Publishing; 2000.Google Scholar
  7. 7.
    Fletcher RJ, Barnhill J, McCarthy J, Strydom A. From DSM to DM-ID. J Ment Health Res Intellect Disabil. 2016;9(3):189–204.CrossRefGoogle Scholar
  8. 8.
    Anagnostou E, Zwaigenbaum L, Szatmari P, Fombonne E, Fernandez BA, Woodbury-Smith M, et al. Autism spectrum disorder: advances in evidence-based practice. CMAJ. 2014;186(7):509–19.CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Happé F, Charlton RA. Aging in autism spectrum disorders: a mini-review. Gerontology. 2012;58(1):70–8.CrossRefPubMedGoogle Scholar
  10. 10.
    Simone R. Aspergirls: empowering females with Asperger syndrome. Philadelphia: Jessica Kingsley Publishers; 2010.Google Scholar
  11. 11.
    Dvir Y, Frazier JA. Autism and schizophrenia. Psychiatric Times. March 15, 2011. Accessed 20 Dec 2016.
  12. 12.
    Perkins EA, Moran JA. Aging adults with intellectual disabilities. JAMA. 2010;304(1):91–2.CrossRefPubMedGoogle Scholar
  13. 13.
    Bishop KM, Hogan M, Janicki MP, Keller SM, Lucchino R, Mughal DT, et al. Health planning work Group of National Task Group on intellectual disabilities and dementia practices. Guidelines for dementia-related health advocacy for adults with intellectual disability and dementia: National Task Group on intellectual disabilities and dementia practices. Intellect Dev Disabil. 2015;53(1):2–29.CrossRefPubMedGoogle Scholar
  14. 14.
    Cooper S, Smiley E, Morrison J, Williamson A, Allan L. Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry. 2007;190:27–35.CrossRefPubMedGoogle Scholar
  15. 15.
    Holland AJ. Ageing and learning disability. Br J Psychiatry. 2000;176(1):26–31.CrossRefPubMedGoogle Scholar
  16. 16.
    Prasher VP, Huxley A, Haque MS. A 24-week, double-blind, placebo-controlled trial of donepezil in patients with down syndrome and Alzheimer’s disease-pilot study. Int J Geriatr Psychiatry. 2002;17(3):270–8.CrossRefPubMedGoogle Scholar
  17. 17.
    Stanton LR, Coetzee RH. Down’s Syndrome and dementia. Adv Psychiatr Treat. 2003;10(1):50–8.CrossRefGoogle Scholar
  18. 18.
    Ball SL, Holland AJ, HonJ, Huppert FA, Treppner P, Watson PC. Personality and behaviour changes mark the early stages of Alzheimer’s disease in adults with Down’s syndrome: findings from a prospective population-based study. Int J Geriatr Psychiatry. 2006;21(7):661–73.CrossRefPubMedGoogle Scholar
  19. 19.
    Maaskant M, van de Wouw E, van Wijck R, Evenhuis HM, Echteld MA. Circadian sleep–wake rhythm of older adults with intellectual disabilities. Res Dev Disabil. 2013;34(4):1144–51.CrossRefPubMedGoogle Scholar
  20. 20.
    Mukaetova-Ladinska E, Perry E, Baron M, Povey C. Ageing in people with autistic spectrum disorder. Int J Geriatr Psychiatry. 2011;27:109–18.CrossRefPubMedGoogle Scholar
  21. 21.
    Thorpe L, Davidson P, Janicki MP. Healthy ageing—adults with intellectual disabilities: biobehavioural issues. Geneva: World Health Organization; 2000.Google Scholar
  22. 22.
    Bhaumik S, Branford D. Frith prescribing guidelines for adults with learning disability. 1st ed. London: Informa Healthcare; 2005.Google Scholar
  23. 23.
    Bhaumik S, Gangadharan KS, Branford D, Barrett M. The Frith prescribing guidelines for people with intellectual disability, 3rd edition. Hoboken: Wiley-Blackwell; 2015.CrossRefGoogle Scholar
  24. 24.
    Povey C, Mills R, de la Cuesta GG. Autism and ageing: issues for the future. Gerontology. 2012;58(1):230–2.Google Scholar
  25. 25.
    World Health Organization. c2016. Available from: Accessed 2 Oct 2016.
  26. 26.
    Esbensen AJ, Seltzer MM, KSL L, Bodfish JW. Age-related differences in restricted repetitive behaviors in autism spectrum disorders. J Autism Dev Disord. 2009;39(1):57–66.CrossRefPubMedGoogle Scholar
  27. 27.
    Chowdhury M, Benson AB, Hillier A. Changes in restricted repetitive behaviors with age: a study of high-functioning adults with autism spectrum disorders. Res Autism Spectr Disord. 2010;4(2):210–6.CrossRefGoogle Scholar
  28. 28.
    Shattuck PT, Marsha MS, Greenberg JS, Orsmond GI, Bolt D, Kring S, Lord C. Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. J Autism Dev Disord. 2007;37(9):1735–47.CrossRefPubMedGoogle Scholar
  29. 29.
    Lever AG, Geurts MH. Age-related differences in cognition across the adult lifespan in autism spectrum disorder. Autism Res. 2016;9(6):666–76.CrossRefPubMedGoogle Scholar
  30. 30.
    Piven J, Rabins P. Autism spectrum disorders in older adults: toward defining a research agenda. J Am Geriatr Soc. 2011;59(11):2151–5.CrossRefPubMedGoogle Scholar
  31. 31.
    National Task Group on Intellectual Disabilities and Dementia Practices. “My Thinker’s Not Working”: a national strategy for enabling adults with intellectual disabilities affected by Dementia to remain in their community and receive quality supports. 2012. Accessed 20 Dec 2016.
  32. 32.
    Sullivan W, Developmental Disabilities Primary Care Initiative Co-editors. Tools for the primary care of adults with developmental disabilities. 2011. Accessed 20 Dec 2016.
  33. 33.
    Vanderbilt Kennedy Center. Health care for adults with intellectual and developmental disabilities: toolkit for primary care providers. Accessed 20 Dec 2016.
  34. 34.
    Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):70–82.CrossRefPubMedGoogle Scholar
  35. 35.
    Boyd K. The curriculum of caring: fostering compassionate, person-centered health care. AMA JEthics. 2016;18(4):384–92.–1604.html. Accessed 22 Dec 2016Google Scholar
  36. 36.
    Lunsky Y, Klein-Geltink JE, Yates EA. Atlas on the primary Care of Adults with developmental disabilities in Ontario. Toronto: Institute for Clinical Evaluative Sciences and Centre for Addiction and Mental Health; 2013.CrossRefGoogle Scholar
  37. 37.
    Fletcher R, Loschen E, Stavrakaki C, First M, editors. Diagnostic manual—intellectual disability (DM-ID): a clinical guide for diagnosis of mental disorders in persons with intellectual disability. Kingston: NADD Press; 2007.Google Scholar
  38. 38.
    Fletcher R, Barnhill J, Cooper S. Diagnostic manual-intellectual disability (DM-ID) 2: a textbook of diagnosis. Kingston: NADD Press; 2016.Google Scholar
  39. 39.
    Bradley E, Korossy M. Behaviour Problems. In: Woodbury-Smith M, editor. Clinical topics in disorders of intellectual development. London: Royal College of Psychiatrists Publications; 2015.Google Scholar
  40. 40.
    Alexander RT, Branford D, Devapriam J. Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviors that challenge: practice guidelines, Faculty Report FR/ID/09. 2016. Accessed 20 Dec 2016.
  41. 41.
    Graham J, Boyd K, Ritsma A. Communicate CARE INTERVIEW. c2015. Accessed 22 Dec 2016.
  42. 42.
  43. 43.
    Reid J, Summers J, Adamson J, Habjan B, Meister C, Gignac V. Mental health it’s with severe communication impairments. Dual Diagnosis: an introduction to mental health needs of persons with developmental disabilities. Webcom Limited. 2002: 553–555.Google Scholar
  44. 44.
    Krasner A, Winter D. Childhood onset schizophrenia. Psychosis Childhood Adolesc. 2014;17:93.Google Scholar
  45. 45.
    Boardman L, Bernal J, Hollins S. Communicating with people with intellectual disabilities: a guide for general psychiatrists. Adv Psychiatr Treat. 2014;20(1):27–36.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.McMaster UniversityDepartment of Psychiatry and Behavioural NeurosciencesHamiltonCanada
  2. 2.BethesdaThoroldCanada

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