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Bereavement In The Lives Of People With Intellectual Disabilities

When a person with intellectual disabilities loses a parent through death, it is not only a loss of someone who is loved, but is also the loss of the person most familiar with their needs, their likes and dislikes, and with whom they had a trusting relationship.

Sandra F Dowling (UK)

The experience of bereavement
"Grief is the price we pay for love" (Parkes, 1986). Just as people with intellectual disabilities form close bonds and loving relationships, so too do they experience grief at times of loss. However, it is still common for people to be marginalised in bereavement.

Who we are and how we live affects the way we grieve. We are all members of various cultural, social, religious and economic groupings, different ages and genders. Although there is a commonality in responses to bereavement at an emotional level, the manner in which we actively grieve or mourn is shaped by the institutions and norms of our social group. Mourning rituals emerge in many guises in different social clusters; individuals within the groups variously interpret these dynamic, fluid structures influenced by changing outlooks and the infusion of ideas from outside, (Parkes et. al., 1997; Doka and Davidson, 1998). Ideas and norms in the prevailing social world influence attitudes and actions. Focusing on bereavement in the lives of people with intellectual disabilities this paper will consider the way in which mutating social positions have variously influenced the manners in which people with intellectual disabilities grieve, or are frequently subject to "disenfranchised grief." (Doka 1989)

The emotional lives of people with intellectual disabilities
There is widespread neglect of the emotional lives of people with intellectual disabilities, and therefore it had been widely thought that they did not experience grief and, as though always living in the present, did not recognise or comprehend loss. Paradoxically it was also commonly mooted that their sorrow would be so great that they should be protected from the harsh reality of death. These ideas have been widely refuted, through the pioneering work of Maureen Oswin (1981, 1985, 1991) and Hollins et al; (1985,1989), whose endeavours confirmed the view that people with intellectual disabilities respond to bereavement and loss in essentially the same way as anyone else.

Recent research (e.g. Hollins and Esterhuyzen, 1997; Bonell-Pascual et. al.1999) has shown that for people with intellectual disabilities the effects of bereavement can be prolonged with people experiencing more anxiety, depression, irritability and other signs of distress.

During the last decade people with intellectual disabilities have become more visible members of our communities. The majority have always lived with their families, irrespective of the creation of dedicated residential services. It is still common for people to be kept in ignorance of the death of someone they are close to and for them to be prevented from attending the funeral or other rituals carried out at times of bereavement such as viewing the body, visiting the grave or scattering ashes. This could be regarded as a 'benevolent exclusion', for protection from the harsh reality of the situation is often the stated motivation behind such decisions. However, this masks the complex web of preconceptions and assumptions that are mobilised in support of people being exiled from their grief. People making decisions on behalf of those with intellectual disabilities often question their ability to understand death or recognise loss, but at the same time, paradoxically, they predict that the person with intellectual disabilities would be overwhelmed by emotions stimulated by loss through death. Family members may also tend not to add their own fears into the equation, and fail to recognise their own -often uncritical -adoption of ideas that in effect legislate against inclusion.

Protecting people from their grief
Fear of the consequences often prompts a decision not to inform someone of a death and to exclude them from involvement in the rituals attached to bereavement. The family may be anxious as to their own ability to cope with the feelings of their intellectually disabled relative, at a time when they are absorbed by their own grief. Further factors obviating inclusion, such as assuming an inability to understand or recognise loss, are contested. Not knowing about an anticipated death means it will come as a sudden shock, with no opportunity to prepare for it emotionally; thus increasing the possibility of a poorer outcome for the bereaved individual.

When a person with intellectual disabilities loses a parent through death, it is not only a loss of someone who is loved, but is also the loss of the person most familiar with their needs, their likes and dislikes, and with whom they had a trusting relationship. It is also loss of the person with whom they could best communicate, who cherished them, whose attention was centred on them, and who provided comfort and companionship. Furthermore, it is loss of the person who recognised and valued their role within in the family, of the life that had been led until now, and of other people who had been part of that life, through the dead relative (Division of Mental Health, 1998).

If living with a sole surviving parent, the bereaved person may have to leave the family home shortly after the death, perhaps to temporary accommodation (Oswin, 1991). Additional major challenges may result, such as adjustment to a succession of new carers and idiosyncratic procedures, and meeting new companions with intellectual disabilities, all with their own competing demands. Unexplained and unexpected changes like this can lead to a loss of individuality, whilst the negotiation of unfamiliar and non-individualised environments can have the effect of making their disability appear worse. (Division of Mental Health, 1998). Staff may be unaware of their background, and treat behaviours that are a reaction to loss as signs of mental ill-health rather than grief. Inappropriate 'treatment' of quite natural responses to loss can make a difficult situation much worse (Bicknell, 1983).

Resistance to the negative stereotyping of people with intellectual disabilities is vital in order to stimulate further progress, both ideologically and materially. The loss of a parent will be a devastating experience for the majority of people, but to avoid the additional losses a person with intellectual disabilities may encounter, increased social integration is essential.

"Exposure to cues relating to bereavement (rather than avoidance of these) have been shown to be crucial in the recovery from grief," (Hollins and Esterhuyzen, 1997). What are the consequences of avoiding such cues?

Case Study:

James a forty-two year old man with Down's Syndrome, lived at home with his parents, his brothers and sister had left home and the three remaining developed a mutually loving and supportive relationship, within which James played a key part. James's father became ill, he was taken into hospital and it was clear that he would not recover. James was taken to visit his father in hospital, he had been worried about his dad, but was relieved to see that he looked comfortable and was being well cared for. James's mother informed the day centre he attends, of the situation, she asked them to be sensitive to the fact that James was fully aware of what was going on and that he may want to talk about it. The day centre staff supported James to make a card for his father and were able to answer some of his questions.

James was able to say goodbye to his father before he died; they spent some time alone together, and this is something that James fondly remembers. James accompanied his mother to view his father's body. His mother says that although James was a little anxious at first, he was a great comfort to her and she could not have managed without him. Prior to the funeral a 'seniors group' at the day centre invited James to come to one of their meetings, some of them had been to funerals before and were keen to share the experience with James so that he knew what to expect.  

 

James attended the funeral. He was very sad as his mother had expected he would be but he welcomed people to his home afterwards and was able to offer support to his mother throughout the day. James carries a photograph of his father with him in his wallet and proudly wears his fathers watch. He talks openly and spontaneously about his father whom he misses greatly. However, through the recognition of his loss and the support of his grieving, James's bereavement did not provoke undue difficulties.
There are significant positive steps being taken in the provision of support services aiming to alleviate difficulties and improve outcomes following bereavement in the lives of people with intellectual disabilities. They form part of continuing progressive development in both attitude and in practice. However, it is not a time for complacency but for continued action towards replacing 'common sense' attitudes supporting exclusion, and promoting a new 'common sense' of inclusion in all aspects of people's lives.

 

Some points to bear in mind

:

  1. Euphemisms about death disadvantage people. For example: Telling someone that their mother or father has 'gone to sleep' may seem a kind way to break the news of their death, but may in fact be the seed of later problems. Sensitively tell people what has happened using plain language.
  2. Always enquire into the bereavement history of patients who have an intellectual disability, and take into account other losses that may have resulted, such as moving home or losing contact with other significant people. Make sure that these are recorded.
  3. People with intellectual disabilities may express difficult emotions through their behaviour. If there has been a change in one of your patients with intellectual disabilities, ask about any past bereavements or other significant losses. These may not necessarily be recent, but past losses could help explain current actions.
  4. Address people with intellectual disabilities directly, irrespective of whoever is with them. If they have experienced bereavement say you understand how sad and painful this must be.
REFERENCES

Bicknell, D.J. (1983). The psychopathology of handicap. British Journal of Medical Psychology 56, 167-78.

Bonell-Pascual, E., Huline-Dickens, S., Hollins, S. et. al. (1999). Bereavement and grief in adults with learning disabilities. A follow-up study. British Journal of Psychiatry 175, 348-350.
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Doka, K., (ed.) (1989). Disenfranchised Grief. Lexington, MA: Lexington Books.

Doka, K., and Davidson, J. D. (1998). Living with Grief. Washington DC: Hospice Foundation of America.

Hollins, S. and Esterhuyzen, A. (1997). Bereavement and grief in adults with learning disabilities. British Journal of Psychiatry 170, 497-501.

Oswin, M. (1981) Bereavement and Mentally Handicapped People. A discussion paper. London: Kings Fund.

Oswin, M. (1985). Bereavement. In: Craft, M., Bicknell, J., and Hollins, S. (eds) A Multi-Disciplinary Approach to mental Handicap. London: Balliere Tindall.

Oswin, M. (1991). Am I Allowed to Cry? A study of bereavement amongst people who have learning difficulties. London: Human Horizons.

Parkes, C. M. (1986). Bereavement: studies of grief in adult life. Harmondsworth, Penguin.

Parkes, C. M., Laungain, P. and Young, B. (eds) (1997). Death and Bereavement across Cultures. London: Routledge.

This article was published on the site in 2002.


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