Part of life is dealing with one's losses and grieving. We have social structures, support systems, teachings and rituals that help us understand and recover from significant loss. It is not uncommon for adults to feel they must protect others from these difficulties, including children, elderly, and persons with disabilities. In fact, strenuous efforts are often made to protect people with developmental disabilities from life's losses and disappointments. The harsh reality of their own and their parent's mortality is a secret they will have been judged too vulnerable to be told. Their death education has often been nonexistent, so their bewilderment at the disappearance of a loved one should be no surprise. It is imperative that all people be able to access the supports given to understand death and loss. Protecting someone usually results in more problems in that grief and mourning will not be properly experienced, leading to more significant future difficulties.
In trying to understand how the needs of someone with a developmental disability might be similar or different to yours and mine, the context in which they have lived their lives must be considered. A very typical situation, for example, is that of a middle-aged person with a developmental disability living in a dependent relationship with ageing parents. The family is often isolated with few friends and little practical support at home. Their adult son or daughter may have a regular daytime occupation, and be accustomed to staying in a respite care home or hostel from time to time. Many adult sons and daughters with a developmental disability play an important role in domestic affairs at home with dependency being very much a two-way matter. When their first parent dies, they may not be told directly of the death. Nevertheless, they will be aware of their parent's absence, of sadness in the family, and of whispered conversations and concern about themselves.
While the rest of the family grieves, emergency admission to respite care or an unexpected holiday with distant relatives may be arranged for the person with a developmental disability. Thus, the person is excluded and kept ignorant of facts that he or she needs to know. Their confusion and fear persists when other family members are coming to terms with their loss. Families comfort themselves with the hope that the person with developmental disability has not noticed or say, "we could not take her to the funeral - she'd be too upset," as if being upset at a funeral was inappropriate.
"Denial" of the loss by the person with a disability at the time is not surprising in these circumstances. The individual's ordinary routines and certainties will have been turned upside down. Prolonged searching behavior and an increase in separation anxiety can be expected. However, angry and aggressive reactions may be delayed to such a degree that, when such behavior does occur, no relationship to the loss is recognized.
A second scenario is seen when the surviving parent dies. The bereaved, dependent person is admitted to emergency care but never returns home. At one stroke, he or she has lost parent and confidante, home and possessions, a familiar neighborhood and routines, and perhaps a pet. Searching for the lost parent and home is difficult unless one is able to explain one's needs and unless a new caregiver is willing to help. In my experience, most caregivers do not recognize emotional needs such as these. A loss of skills, and decreased joi de vivre may lead to inappropriate and difficult to reverse decisions about future living arrangements and opportunities.
There are other loss situations which might be experienced by a resident of a long-term institutional placement. Staff turnover, the discharge of roommates to community care, the end of weekly visits by a devoted parent - now dead - and the death of people one has lived with for many years all go unremarked.
Developmental disabilities is a broad category which encompasses mild developmental difficulties to profound mental retardation with multiple disabilities. The greater the handicap, the less likely the individual's grief will be recognized. Caregivers tend to ignore or misunderstand the effects of such losses. Research has shown that some people with developmental disabilities will have a delayed understanding of the ageing process. It seems likely that the irreversibility, universality, and the inevitability of death will all be difficult concepts to understand, despite many years of experience as an adult. The capacity to integrate their experiences and to learn from them will be limited unless sensitive help is available.
It is unlikely that the attitudes of a family or of professional caregivers will change in the period between a death and the funeral. There is an important advocacy role for doctors, care managers and social workers who must not be afraid to challenge caregivers and support providers who make decisions to exclude the person with a disability from the full grieving process.
The following recommendations are made to assist persons with disabilities in dealing with death and loss.
People with disabilities have a right to participate fully in the grief and
mourning process and in all of society's support systems and rituals associated
with these losses. Concerted effort is needed to offer death education to
professionals and to parent organizations so that they may become familiar with
normal grief reactions and provide proper supports. Death education can be
introduced into the school and adult education curriculum for people with
developmental disabilities. Advice is needed to construct guidelines for special
agencies to follow when a death does occur. This might include helping
professional caregivers rehearse breaking the news of a death. Practical plans
to avoid immediate admission to residential care are required. The importance of
ensuring that the bereaved person has some mementos of their deceased relative
must be remembered and advice on the importance of nonverbal rituals at the
funeral may be helpful. Bereavement counseling for persons with a developmental
disability should be made available routinely and not just when a maladaptive
reaction has been recognized as grief. Both individual and group work with
bereaved individuals may be helpful, particularly if nonverbal approaches, such
as the use of counseling picture books, are available.
1. Hollins S, Sireling L (eds). When Dad Died, 2nd Edition. London: St. George's Hospital Medical School, St. George's Mental Health Library, 1994.
2. Hollins S, Sireling L. (eds). When Mum Died, 2nd Edition. London: St. George's Hospital Medical School, St. George's Mental Health Library, 1989.
3. Hollins S, Sireling L (eds). Working Through Loss with People Who Have Learning Disabilities. Windsor: NFER-Nelson, 1990.
4. Kloeppel DA, Hollins S. Double handicap: Mental retardation and death in the family. Death Studies 1989;13:31-38.
5. Oswin M. Am I Allowed to Cry?. London: Souvenir Press (E & A) Ltd, 1991.
6. Stroebe MS, Storebe W, Hansson RO. Handbook of Bereavement. Cambridge, England: Cambridge University Press, 1993.
Dr. Sheila Hollins is Professor of Psychiatry of Disability at St. George's
Hospital Medical School, University of London, Consultant Psychiatrist in the
Wandsworth Community Health Trust and Chairperson of the Section for the
Psychiatry of Mental Retardation at the Royal College of Psychiatrists. Write
her at Division of Psychiatry of Disability, St. George's Hospital Medical
School, University of London, Jenner Wing, Cranmer Terrace, London, SW17 ORE,