Supporting People as the Age

Challenges

Dying and death are an inevitable part of life and are challenging issues for all of us. Everyone needs support to deal with this reality, whether it is our own impending death or that of others. As we age, we all are faced more often with the death of family (e.g., parents) and friends, so these issues are especially important for older people with intellectual and developmental disabilities (IDD). However, research shows that too often people with IDD are not getting the help and information they need to understand and deal with death-related issues. Because of these problems, many more people with IDD experience confusion, distress, and complicated grief (O’Riordan et al., 2022).

Barriers to receiving appropriate support include:

• Caregivers, including DSPs, being unsure of what to say or reluctant to talk about death and dying for fear of upsetting the person or causing psychological harm. Even when the person with IDD asks about death, caregivers may be unwilling to talk about it (Tuffrey-Wijne et al., 2020, Wiese et al., 2013).
• People with IDD not being told that a person they care about is dying (Tuffrey-Wijne et al., 2020), or in some cases that they have died. This denies the individual the chance to say goodbye, and to prepare emotionally for the person’s eventual passing. From the perspective of the individual with IDD, this often means that the person’s death comes as a sudden, unexpected shock, the kind of bereavement that is most difficult to cope with emotionally (O’Riordan et al., 2022).
• Some people with IDD are excluded from attending funerals. When people with IDD do go, they may not have been supported beforehand to understand what happens at a funeral (Forrester-Jones et al., 2022).
• People with IDD are usually told they are ill but rarely informed that they will die (Tuffrey-Wijne et al., 2020). This situation robs them of the opportunity to plan, to say farewell to loved ones, and to have wished for experiences while still well enough.

The good news is that recent research reveals that many of these barriers can be overcome. For example:

• Research shows that individuals with IDD want to talk about end of life and can do so without psychological harm (Stancliffe et al., 2021).
• Educational interventions on end of life can reduce the intensity of complicated grief and increase understanding of the concept of death, including among those who have experienced a recent family bereavement (Fernández-Ávalos et al., 2023).

Roger Stancliffe

What DSPs Can Do to Support

End-of-life discussions are needed to support people with IDD. Recognize that education about these issues is a human right for individuals with IDD. Starting this process in the midst of grief and loss is too late. It is easier and better to have discussions about dying and death much earlier as part of everyday life, so that when dealing these issues the person already has a better understanding to help them cope and make informed choices. That said, each individual is unique, and these discussions should take place at the person’s own pace.

Resources

Helping people with IDD to understand and deal with this inevitable part of life can be daunting. Fortunately, there are many great resources to help.

Talking End of Life (TEL) is a free online resource designed for direct support professionals (DSPs) as its primary audience/users. TEL has 12 modules, each of which has a resource list at the end. There is a module on Loss, Grief and Mourning which includes video clips, individual stories, discussion questions, and resources. Importantly, the videos feature real people with IDD and their DSPs, not actors. There are lots of relevant materials in other modules, such as

• Managing feelings
• Why is this important?

As well as grief and mourning, these experiences of loss may prompt people with IDD to think about their own future dying and death and perhaps even discuss it and plan for it. Modules that are helpful for these purposes include:

• Your role as a DSP
• Funeral wishes
• Bequeathing (leaving your possession to others when you die)

TEL also has a Resources tab . That page has a consolidated list of resources, organized by module, with links and a brief description. One example is:

· The Books Beyond Words series Books designed for people with intellectual disability that include only pictures. This allows you to make the story relevant to the person. Topics include, ‘Am I Going to Die?’, ‘Getting on with Cancer’ and ‘Ann has Dementia.’

Other excellent recent resources are:

• The Victoria & Stuart Project: End of Life Care Planning with People with Learning Disabilities. This UK toolkit was created to support IDD staff with end-of-life care planning.
• Palliative Care and People with Learning Disabilities (PCPLD) Network. A network aimed at ensuring quality palliative care. This website has resources on various palliative care topics.

Another way DSPs can use these resources is when having discussions with a client’s family. For example, the family may be uncomfortable about their family member with IDD being told about a likely death in the family, motivated by a desire to “protect” them from this reality. You can use various resources listed above to help families to see that informing and including their family member is a better, more supportive way.

References

Fernández-Ávalos, M., Fernández-Álcántara, M., Cruz-Quintana, F., Turnbull, O. H., Ferrer-Cascales, R., & Pérez-Marfilm, M. N. (2023). Coping with death and bereavement: A proactive intervention program for adults with intellectual disability. Journal of Mental Health Research in Intellectual Disabilities, 16(3), 339. https://doi.org/10.1080/19315864.2023.2169420

Forrester-Jones, R., McCallion, P., McCarron, M., Stancliffe, R. J., & Wiese, M. Y., (2022). Accessible funerals and people with intellectual disability. In R. J. Stancliffe, M. Y. Wiese, P. McCallion, & M. McCarron (Eds.), End of life and people with intellectual and developmental disability: Contemporary issues, challenges, experiences and practice (pp. 265-296). Palgrave MacMillan. https://doi.org/10.1007/978-3-030-98697-1_10

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

Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., Barton, R., & Clayton, J. M. (2021). Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm? Journal of Applied Research in Intellectual Disabilities, 34(2), 659-669. https://doi.org/10.1111/jar.12835

Tuffrey-Wijne, 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

Wiese, M., Dew, A., Stancliffe, R. J., Howarth, G., & Balandin, S. (2013). "If and when?": the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57(10), 980-992. https://doi.org/10.1111/j.1365-2788.2012.01593.x

Updated and reprinted with permission from Frontline Initiative on Direct Support Professionals Respond to COVID-19 (2021), 17(2). https://publications.ici.umn.edu/frontline-initiative/17-2/end-of-life-resources

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