How Can We Assist People with Intellectual Disabilities to Grieve Healthily?

The Constellation Project Australia’s Blog has a valuable story on assisting people with Intellectual Disabilities in their grieving and healing journey.

There web link is here: Constellation Project Australia, their story follows here.

Intellectual Disability and Grief

People with intellectual disability ‘labels’ are members of a very diverse group so it is important to be cautious when giving what is very ‘generalised’ information . However, the information provided here raises some important issues and provides useful reading and links which might enable you to assist people with an intellectual disability who are bereaved and their families.

Just like everyone else..

People with an intellectual disability have long been considered ‘incapable’ of grief – just as children once were. It was thought that if someone had an intellectual disability they did not have the competence to form meaningful relationships and did not possess the necessary understanding to realise what death is.

Thankfully, our understandings and attitudes have now moved on a great deal. People with a disability obviously develop very deep attachments to family members and friends. They are as likely to grieve for a loved one who has died as any other person. Their feelings of grief and loss are not to be discounted or underestimated.

Around half of the people who have an intellectual disability have difficulty communicating. If a person does not communicate verbally or by using sign language their grief may not be recognised for what it is. For example, Expressions of anger and restlessness after a bereavement for example, can be misinterpreted (by family members and professionals) as a symptom of someone’s impairment rather than a normal grief response. This is ‘diagnostic overshadowing’; the tendency to ascribe any emotional or behavioural difficulty to the disability itself, and therefore to minimise the importance of emotional state or situational change (Brickell & Munir, 2008).

In some cases misinterpretation can have serious consequences (Riches, 2008). Changes in behaviour brought about by bereavement can result in changes to care planning and provision which are inappropriate.

Studies show that even caregivers underestimate the impact of grief on individuals with an intellectual disability, even when the people affected are able to express their sadness and anguish. (Emerson, 1977; Strachan, 1981).

Many parents find it difficult to communicate with their children about a death especially when they are themselves dealing with the loss. Research shows that even caregivers who were given training and a specific directive to focus on bereavement issues with family members with intellectual disabilities, had trouble talking to them about grief (Dowling et al 2006). Professional support can therefore benefit some families.

Studies show that many people with intellectual disabilities not only experience a sustained period of grief after a death, (which is natural) ,but can develop more complex grief reactions. Part of the reason for this could be the tendency of caregivers to “shield” and “protect” and stifle the expression of grief. Research seems to suggest that people with intellectual disabilities may benefit from enhanced professional support (Brickell & Munir, 2008).

How can we better understand grief in people who have communication difficulties?

It is helpful for loved ones, support staff and professionals to know some of the feelings, physical sensations and behaviours associated with grief. This way they can respond with appropriate support.  A very helpful UK website contains information for people with intellectual disability, their families and professionals who work with them.

How can we assist people with intellectual disabilities to grieve healthily?

Some pointers:

  • Make sure any agency staff who may provide assistance for the person with intellectual disability are made aware of their loss
  • Warm, caring and trusting relationships (whether personal or professional) provide a safe basis  from which to heal.
  • Facilitate people with an intellectual disability to participate in viewing their loved one’s body if they wish, and in rituals of grief such as funerals and memorial services.
  • Repeatedly explain and communicate about the death using non-verbal communication methods if necessary.
  • Making sure the person always has photos and other memorial items relating to the deceased loved one.
  • Accessible activities such as tree-planting, art work, gardening, memory boxes etc which can help the person adapt to the death of a loved one whilst maintaining a special and positive connection to their memory.

Links and resources

Link to accessible booklet about grief and loss for women with an intellectual disability:

Books and journal articles

Brickell, C., & Munir, K. (2008). Grief and its Complications in Individuals with an Intellectual Disability. Harvard Review Psychiatry, January/February, 1-12.
Emerson, P. (1977). Covert grief reactions in mentally retarded clients. Mental Retardation, 15, 44-45.
Strachan, J. (1981). Reactions to bereavement: a study of a group of adult mentally handicapped residents. Apex, 9, 20-21.
Worden, W. (1992). Grief Counselling and Grief Therapy. New York: Springer Publishing Company.
Riches, V. (2008). Unrecognised and Unsupported: Grief among People with Intellectual Disability [online]. The Australian Journal of Grief and Bereavement, 11(2), 48-53.
Dowling, S., Hubert, J., & White, S. (2006). Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research, 20, 277-287.

Resource list