We would like to share the observations, reflections and research we established from a common professional experience. We both had the opportunity to spend some time working in a living facility for adults with mental disabilities (persons with autistic spectrum disorder, Down syndrome, etc.). This social institution is managed by an association that mainly aims to include this population and their families in our society. We worked there as specialized educator, each of us for two months (Samuel in 2019, Héloïse in 2020).
When we talked about our experiences, we found out that grieving seemed very complex for many of the residents. Some were going through deep moments of distress (for example, intense crying spells lasting about 20 minutes) because of the death of a family member, even when it had occurred many years ago. This made us realise how right Kauffman was when he said: “The grief reaction of the mentally retarded person is usually more complicated than the grief reaction of persons who are not mentally retarded” (Kauffman, 1994, p.265). What are these specific difficulties related to? How can people with intellectual disabilities be supported in accepting the death of a loved one? Our observations in the field and the reading of various articles have enabled us to shed some light on this subject.
First of all, mourning makes each human being go through many complex emotions. However, the ability to identify and manage one’s emotions can be altered for some people, due to their disability. For example, for people with trisomy 21, emotional regulation is made difficult by delayed neurological maturation and cognitive deficit (Ciccheti et al., 1991, cited by Nader-Grosbois, 2015).
Emotions can be even more complex as the relationships between adults with intellectual disabilities and their families are often tinged with ambivalence. For example, many parents instil in their disabled child, consciously or unconsciously, a lifelong feeling of selfshame, guilt or disapproval (Kauffman, 1994). Thus, one can understand how difficult it is for a person to accept the death of a relative from whom they never received approval nor pride (even when they were loved!). This emotional chaos can also spread confusion in understanding the event: some people, who are used to feel implicitly blamed by their parents, will also blame themselves for their death (Kauffman, 1994). We can imagine how this phenomenon of magical thinking participates to their distress.
When one is grieving, communicating with family and friends can help to accept the loss. However, as the communication and understanding skills of people with disabilities are often impaired, it can be difficult for them to seek social support and to really benefit from it.
[Héloïse: Once, a resident of the living facility said: “My sister told me not to think too much about my (dead) mother”, I asked her if she understood why her sister had said that. She didn’t, so I had a long talk with her to make her understand that her sister wanted to protect her from her sadness, out of love for her. The situation then seemed clearer and she looked reassured].
In addition, family and professionals can sometimes fail to support people with intellectual disabilities who are grieving. Psychologists are constantly observing the lack of understanding, recognition and support that intensifies the patient’s grief (Kauffman, 1994 ; Young, 2017). For example, the family members may feel anxious about upcoming deaths (parents, grandparents, sick friend…), and give up on talking about it with the person. They may sometimes justify this by saying that the person is not able to understand a concept as abstract as death anyway. The person may therefore lose the benefit of preparing for the parent’s death and « saying goodbye » (Young, 2017). Then, the death can become a real trauma for the person, and lead to long-term problems such as depression or dysfunctional behaviours (including aggression; Kauffman, 1994).
Another example of a failing environment is when the person lives in an institution where professionals struggle to face an ethical dilemma. Choosing to spend a lot of time with a person who is going through a difficult period of grief may indeed mean to pay less attention to other residents. In that case, the “choice” to give up assisting the person in distress is all the more likely to be made when professionals are understaffed or have little or no training in dealing with such situations.
Moreover, when one is born with a mental disability, the bond of dependence (which can be emotional, physical, financial, etc.) on parents can be very strong and last throughout life. Death can therefore cause a very deep sense of loneliness and vulnerability as the parent creates a bulwark between oneself and external difficulties. As Kloeppel & Hollins (1989) explained, the loss of a loved one brings not only grief, but also changes in daily habits, in the quality of support and in the attention that the person receives. Sometimes, it also has an impact on financial resources and living standards. Kloeppel & Hollins (1989) compare these additional changes to a ‘’snowball effect”. This overwhelming changes can also occur when the death of a parent creates dissension within the siblings. Then, if the person with intellectual disability (ID) does not have the capacity to understand them or to participate in collective decisions (about inheritance, sale of property, etc.), this may generate or increase his/her feelings of exclusion and distress.
Finally, focusing on one’s own future can help to overcome his/her grief. For example, one can focus on one’s professional career, start one’s own family, or get involved in artistic or charitable activities. However, creating and investing in new projects requires important cognitive, social and emotional skills. Although this is possible for many people with disabilities, it can also be too complex and demanding.
These observations made us wonder about the role that could be played by mental health professionals in such a mourning phase, whether it be with the person, his or her family or the institutional team. As Young (2017) said: “While we cannot take the pain of the loss away, we can help to alleviate some of the barriers which prevent people with PIMD from grieving in supported ways.”
First of all, in order to face such difficulties, the institutions that accompany the person need to adopt a holistic approach (Kloeppel & Hollins, 1989). Changes in the person’s life have to be anticipated on emotional, cognitive, financial and practical levels, and in his/her social, familial and personal dimensions. Kauffman (1994) therefore advises institutions to develop protocols to manage family bereavement situations and provide reliable and appropriate support.
Upstream of any loss, two things can be put in place. Firstly, according to Kloeppel & Hollins (1989), it is important for professionals to adopt an educational approach to convey information about death and bereavement (for example, by reading and then discussing stories about these topics). Secondly, it is possible to teach the person how to manage their negative emotions in a more ‘’efficient’’ way. For example, Young (2017) advises to use “rhythmic movement, drumming, music and massage” (p.135) to help people calm down when they are going through an intense period of sadness or anxiety.
Once the person has lost a loved one, the institution must also provide a space and a moment to allow the person to talk about their emotions (or to express them in a non-verbal way). If it’s too complicated to set up, the person may be offered to see a therapist outside of the institution. However, this therapist must be selected for his/her knowledge and skills in the field of intellectual disability, so that the person won’t, once again, be confronted with a lack of knowledge of his/her emotions. For example, one of the residents was consulting a psychologist; she had decided that an educator would accompany her to facilitate the verbal exchange. The aim was to help her interpret the events and the emotions associated with them, to find explanations for what was happening to her, to establish cause-and-effect links (for example the fact that she had been seeing her sisters less since her mother’s death, as they were very busy looking after the estate).
Professionals may also intervene with the person and his or her family to encourage participation in social events following the death: the funeral eve, the burial, sorting the deceased’s belongings, etc. On one hand, this allows the person to feel included and recognised as a loved one of the deceased, which is important from a socio-emotional point of view. On the other hand, it is also useful on a cognitive-emotional level, as the person will hear people talking about their emotions or expressing them physically, which can provide a better understanding of the emotions and sensations he/she is experiencing (Young, 2017).
The institution can also inform the family that it is critical to recognise the suffering of the person with a disability, which is often denied or minimised. On this subject, Kauffman (1994) states that, mourning on one hand, and supporting a mourning person on the other hand, are the most universal proofs of humanity. Then, providing this support may help the caregiver to quit a relationship between a “caregiver” and a “disabled person” and to build a real sharing experience as human beings.
“Recognizing client’s grief and experiencing their loss in the caregiving relationship humanizes the client, the relationship, and the caregiver. With a group such as the mentally retarded, whose humanity is already disenfranchised, mourning their grief opens and nourishes the common human bond” (Kauffman, 1994, p.258).
In order to raise family awareness, Young (2017) refers to Worden’s (2008) model, “the Four tasks of Grief”. This model outlines the four “tasks” we can engage in to change the way we grieve: “to accept the reality of the loss, to process the pain of grief, to adjust to a world without the deceased and to find an enduring connection with the person” (p.133). Worden explains how, at each of these stages, people with PIMD face obstacles that are specific to their social and cognitive specificities.
The institution can also recommend to have family discussions about the dead person, supporting the dialogue through the narration of family memories, the creation of photo albums, photo boxes or symbolic objects. These « linking objects » would represent the bonds of attachment between family members. Thus, it could help the person to accept the death of their loved one through the certainty that they remain connected.
For example, religious or spiritual rituals can be organised around these objects so the person can feel that the connection remains (Young, 2017). Thus, as surprising as it may seem to a lot of people, the key components of spirituality (transcendental links between beings, life and death meaning, etc.), can be ‘’efficiently’’ invested by people with ID, as much as it is by people without ID.
Given the fact that only a limited number of studies have been carried out on this subject, Young (2017) states that people with ID (intellectual disabilities) are regarded as a group ‘apart’ from society, to the point that they are too often denied the most universal of emotions. This awareness leads us to ask ourselves about our own beliefs and the resulting behaviours in our professional practice, in this case in the home where we both worked.
Kauffman, J. (1994). Mourning and mental retardation. Death studies, 18(3), 257-271. http://doi:10.1080/07481189408252658
Kloeppel, D.A. & Hollins, S. (1989). Double handicap: mental retardation and death in the family. Death studies, 13(3), 31-38. http://doi:10.1080/07481188908252277
Nader-Grosbois, N. (2015). Psychologie du handicap. Louvain-la-Neuve (Belgique) : De Boeck.
Young, H. (2017). Overcoming barriers to grief: supporting bereaved people with profound intelectual and multiple disabilities. International Journal of Developmental Disabilities, 63(3), 131-137. http://doi:10.1080/20473869.2016.1158511
Words we have learned
- A living facilty: foyer de vie
- Specialized educator: éducateur spécialisé
- Mourning: deuil
- upstream : en amont