Treating Grief in Adults with Intellectual Disability

About

Research indicates that adults with Intellectual Disabilities (ID) are acutely susceptible to complex grief and prolonged grief disorder, though it is often missed or misdiagnosed. This webpage was created as a resource for the Masters in Mental Health Counseling Capstone Treating grief in adults with intellectual disability: A Primer for Psychotherapists from 2024 Naropa University M.A. in Clinical Mental Health Counseling candidate Sarah Jane Coffey.


This site includes access to the capstone slides, related links to resources, trainings, and organizations recommended by Sarah Jane for professionals working with grief in adults with ID. It also includes her full resource list.


This presentation and its supporting materials have been selected to be of use to clinical mental health counselors and outline barriers to treatment and the role of disenfranchised grief for adults with ID, recommendations for case conceptualization of grief in adults with ID, and guidelines for evidence-based mindfulness and transpersonal practices for treating complex grief and prolonged grief disorder in adults with ID with mindfulness practices, Gestalt, ritual, and meaning-making.


More about and contact info for Sarah Jane at Through.



8 prinicples for transpersonally working with grief in folks with ID from Sarah Jane Coffey

  1. Do your own work around mortality, death, and grief before you work with others.
  2. Keep a strong back and an open front.
  3. Tell the truth. Use concrete language. Provide death education.
  4. Incorportate non-verbal communication and ways of knowing.
  5. Assess for the impact of secondary losses and address perceptions of fears of not having basic needs met, personal instability and insecurity before moving to emotional process.
  6. Follow the lead of the client.
  7. Treatment is a team effort. Involve family, caregivers, and enact a team approach to treatment and ongoing support.
  8. Practice ongoing self-examination to illuminate and quell bias prior to entering the therapy room.



Grief and ID Terminology

Intellectual Disability*

From the American Association of Intellectual and Developmental Disabilities:

  • IQ is below 70.
  • Significant limitations in adaptive behavior in conceptual, social and/or practical skills.
  • Disability manifests itself before the age of 22.


*In the UK the terms learning disability and intellectual disability are often used interchangeably.


Complicated Grief

Lasts more than 6 months.

Probably makes others uncomfortable.


Normal Grief

Less than 6 months.

Doesn’t make anyone else too uncomfortable.

Really kind of a bull s*** term.


Prolonged Grief Disorder

Only grief disorder recognized in DSM.

Loss occurred at least 12+ months ago.

Cx must exhibit acute behavioral, mood, or emotional symptoms that impact their activities of daily living.

Traumatic Grief

Grief that is related to a traumatic event. Can also include the experience of a loss of an individual whom the bereaved shared a traumatic history, past experience, or relationship.

Anticipatory Grief

Grief.

That occurs prior to the loss.

Disenfranchised Grief

Grief that society does not acknowledge either the loss itself, or the impact of the loss on the individual.

Can also include grief where the death was from socially marginalized methods (M.A.I.D., suicide, violence) or of an socially outcast individual.

Grief Surround

Activities, rituals, and involvement in activities related to and proceeding, at time of, and following the death.

Seondary Losses

A loss that triggered as a result of the original death or loss.

Capstone References


American Association on Intellectual and Developmental Disabilities. (n.d.). Defining Criteria for Intellectual Disability. AAIDD_CMS. https://www.aaidd.org/intellectual-disability/definition


American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596


Blackman, N. (2008). The development of an assessment tool for the bereavement needs of people with learning disabilities. British Journal of Learning Disabilities, 36(3), 165–170. https://doi-org.naropa.idm.oclc.org/10.1111/j.1468-3156.2008.00514.x


Breen, J. (2017). Adapting the GAD-7 and PHQ-9 clinical measures for people with learning disabilities. [Doctoral Thesis, Royal Holloway, University of London].


Brickell, C., & Munir, K. (2008). Grief and its Complications in Individuals with Intellectual Disability. Harvard Review of Psychiatry, 16(1), 1–12. https://doi-org.naropa.idm.oclc.org/10.1080/10673220801929786


Bowman, D., Leakey, T. A., & Friedman, N. (2006). The power of gestalt therapy in accessing the transpersonal: Working with physical difference and disability. Gestalt Review, 10(1), 42–59. https://doi.org/10.5325/gestaltreview.10.1.0042


Gilbert, K.R., & Macpherson, C. (2021). Contemporary grief theories. In H.L. Servaty-Seib & H. Stanton Chapple (Eds.), Handbook of thanatology: The essential body of knowledge for the study of death, dying, and bereavement (3rd ed., pp. 282-307). Association for Death Education and Counselling.


Glass, I. (Host). (2021, May 28). Good Grief (No. 738) [Audio podcast episode]. In This American Life. WBEZ Chicago. https://www.thisamericanlife.org/738/good-grief


Gray, J. A., & Abendroth, M. (2016). Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice. Journal of Applied Research in Intellectual Disabilities, 29(5), 468–480. https://doi-org.naropa.idm.oclc.org/10.1111/jar.12189


Forrester, J. R. (2013). The road barely taken: Funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(3), 243–256. https://doi-org.naropa.idm.oclc.org/10.1111/jar.12022


Haider, N., & Zaman, N. I. (2024). Bereavement among Adolescents with Intellectual Disability: A Qualitative Study. Omega: Journal of Death & Dying, 88(4), 1515–1529. https://doi-org.naropa.idm.oclc.org/10.1177/00302228211065275


Hollingsworth, L. A., & Didelot, M. J. (2002). Transpersonal Therapy: Accessing the Faith Factor for People with Disabilities. Journal of Religion, Disability & Health, 6(4), 31. https://doi-org.naropa.idm.oclc.org/10.1300/J095v06n04_03


Jenkins, L., Creswell, A., Peters, V., Allum, P., & Charlesworth, P. (2021, February 9). Supporting people with learning disabilities in bereavement webinar. YouTube. https://www.youtube.com/watch?v=1Z4IuRcbJJE


Kosminsky, P. S., & Jordan, J. R. (2016). Attachment-informed grief therapy: The clinician’s guide to foundations and applications. Routledge/Taylor & Francis Group. https://doi-org.naropa.idm.oclc.org/10.4324/9780203798393


Ljubičić, M., Burčul, I., Gusar, I., & Šare, S. (2023). Are They the Same for All People? Nurses’ Knowledge about the Basic Human Needs of People with Disabilities. Behavioral Sciences (2076-328X), 13(1), 68. https://doi-org.naropa.idm.oclc.org/10.3390/bs13010068


Morse , R. S., Hoch, T. T., & Freeman, T. (2016). Grief and Developmental Disabilities. In Handbook of Social Justice in Loss and Grief (pp. 154–164). essay, Routledge.


Patterson, C. W., & Golightly, M. (2023). Adults with intellectual disabilities and third‐wave therapies: A systematic review and meta‐ethnography. Journal of Applied Research in Intellectual Disabilities, 36(1), 13–27. https://doi-org.naropa.idm.oclc.org/10.1111/jar.13045


McRitchie, R., McKenzie, K., Quayle, E., Harlin, M., & Neumann, K. (2014). How Adults With an Intellectual Disability Experience Bereavement and Grief: A Qualitative Exploration. Death Studies, 38(3), 179–185. https://doi.org/10.1080/07481187.2012.738772


O'Riordan, D., Boland, G., Guerin, S., & Dodd, P. (2022). Synthesizing existing research on complicated grief in intellectual disability: findings from a systematic review. Journal of intellectual disability research : JIDR, 66(11), 833–852. https://doi.org/10.1111/jir.12973


Strohl, J. E. (1998). Transpersonalism: Ego meets soul. Journal of Counseling & Development, 76(4), 397–403. https://doi.org/10.1002/j.1556-6676.1998.tb02698.x


Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry, 15, 1-18. https://doi.org/10.1207/s15327965pli1501_01


Tuffrey, W. I., Finlayson, J., Bernal, J., Taggart, L., Lam, C. K. K., & Todd, S. (2020). Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK‐wide survey of intellectual disability support staff. Journal of Applied Research in Intellectual Disabilities, 33(5), 927–938. https://doi.org/10.1111/jar.12714


Whitehouse, R. M., Tudway, J. A., Look, R., & Kroese, B. S. (2006). Adapting Individual Psychotherapy for Adults with Intellectual Disabilities: A Comparative Review of the Cognitive–Behavioural and Psychodynamic Literature. Journal of Applied Research in Intellectual Disabilities, 19(1), 55–65. https://doi-org.naropa.idm.oclc.org/10.1111/j.1468-3148.2005.00281.x