Bereavement is a universal experience. We have social structures, support systems, teachings and rituals to help us understand and recover from significant loss. As people with intellectual disabilities (ID) are living longer, many are experiencing an increased range of life events, including bereavement. In the general population, there is significant research interest in identifying those grief-related symptoms and factors that best predict long-term functional impairment to inform the development of efficacious therapeutic approaches. Although some research has been done in the area of grief and bereavement among people with intellectual disabilities, further work needs to be done with families, staff and the general population to improve recognition, assessment and management of such a delicate stage of life among those who have an intellectual disability.
People with intellectual disabilities are still not always told about the death of a family member or close friend, because it is often thought they would not understand or they are judged as being too vulnerable to cope with it. This is not actually the case; it is now evident that someone with an intellectual disability grieves in the same way as anyone else. There is a growing recognition that people with ID experience significant suffering following the loss of a loved one. Although some individuals may have difficulty in understanding concepts of loss and death because of their severe intellectual delay, most of them still miss people and express the full range of emotions. Grief responses are manifest across physical, behavioural, psychological and emotional domains.
The harsh reality for people with intellectual disabilities is that they are still seen as needing protection from the knowledge of the death of a close one. Protecting someone in this way usually results in grief and mourning not being experienced properly, leading to more significant difficulties in the future. There has been evidence of increased psychiatric problems for people with intellectual disabilities, if they are prohibited from grieving and if their need for extra help in dealing with bereavement is not met.
A typical case
A typical situation still encountered nowadays is that of a middle.aged person with an intellectual 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 perhaps provided with respite away from home occasionally. But they have had no lifetime death education. When the first parent dies, they may not be told directly of the death. Nevertheless, they will be aware of their parent’s absence, the sadness in the family and the whispered conversations. While the rest of the family grieves, the person with disability may be sent for respite or for an unexpected ‘holiday’ with another relative. The person is excluded from the real situation, making the confusion and isolation persist. It is not surprising then that the ‘denial’ or delayed response to the loss by the person with intellectual disabilities becomes a problem to solve. The individual’s routines have been changed tremendously and he or she is uncertain and unsure of their future. Prolonged searching behaviour and an increase in separation anxiety can be expected. However, behavioural problems and anger reactions may be delayed to such an extent that the causal relationship of the loss may not be easily seen.
A second scenario occurs when the second parent dies. In many cases, the person with intellectual disabilities is admitted to emergency accommodation, and may never return to the family home. That it is when, without warning, he or she loses a parent and protector, a confidante, a home, a routine, a pet—in summary, their entire life.
Effects of grief in intellectual disability
Research in the general population has concluded that grief counselling should only be warranted for the minority of people who are faced with extraordinary stress, who are especially vulnerable and/or lacking support. But Dowling and colleagues (2006) have suggested that grief in people with intellectual disabilities has usually been undertreated and that individuals are put under extra stress owing to their lack of information or the overprotective measures put in place.
While there has been limited research in the field of grief in intellectual disability, one of the most convincing studies in recent years has been the randomised controlled trial in a British sample, comparing two community-based interventions for bereavement in adults with intellectual disability. The two interventions were 15 sessions with a volunteer bereavement counsellor or bereavement support from their usual caregivers. The latter provision was not found to be successful; support was often incomplete or discontinued for fear of upsetting the patient. In contrast, the counselling intervention showed dramatic improvement not only in the objective rating scales used (the ABC and the Health of the Nations Outcome Scales for People with Learning Disabilities), but also in the subjective measures from the participants.
They felt they had the opportunity of one-to-one therapy and to talk about their important loss. This study highlighted both the tendency of staff to overprotect and shield individuals with intellectual disability from talking about their grief— and the beneficial effects of breaking that silence.
Another recent study completed by MacHale and Tierney (2009) explored the service users’ understanding of death, by interviewing 34 service users with mild or moderate intellectual disability. Their concept of death was assessed using vignettes describing death-related incidents. One in four participants had a fully developed concept of death; just over two-thirds showed understanding of finality; a similar number understood nonfunctionality; and an understanding of universality was evident in two-thirds of participants. Almost all participants described various causes of death. In addition, when corresponding key workers were interviewed, the results showed that staff overestimated the service users’ understanding of the components of the concept of death.
Dodd and co-workers (2005) introduced a bereavement history questionnaire, with a newly.developed measure examining symptoms of complicated grief administered to a group of carers of people with mild or moderate intellectual disability who had experienced a parental bereavement within the previous two years. The authors showed that bereaved individuals with intellectual disability experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement.
How to help
People with intellectual disability may be at greater risk of developing pathological grief responses for three main reasons: Secondary losses, such as family home and environment, carers, pets, neighbours, etc., add to the difficulties service users face in achieving restored coping skills. People with intellectual disability frequently have difficulties in communicating effectively about their loss. People with intellectual disability may have difficulty in understanding fully the meaning of loss, which is an important coping strategy used by individuals in the general population.
The following general recommendations are important in assisting persons with intellectual disability to deal with death and loss:
- Be honest, and include and involve the person.
- Listen; being available and supportive is essential.
- Actively seek out nonverbal rituals. Counselling picture books, for example, can be helpful in explaining what has happened when someone dies.
- Share photos and other mementos at a later stage, when the emotional turmoil has subsided.
- Minimise change in the person’s routine, accommodation and familiar caregivers.
- Assist searching behaviour to support emotional recovery, and support the observance of anniversaries.
- Seek specialist advice for consultation if behavioural changes persist.
People with intellectual disabilities have the right to be told of and to be fully involved in the grief and mourning process, and in all the societal supports and rituals associated with death. There is a widespread belief that family involvement and funeral rituals are a source of valuable social support. One of the functions of rituals is to reinforce group ties, both between the dead and the living, and between survivors. This reaffirmation of group membership can be supportive in both practical and emotional terms, and to be deprived of it may be detrimental to one’s mental health. It is widely accepted that mourning facilitates the transition to a new life after the death of a family member or close friend.
The work of Maureen Oswin in the 1980s began to discuss and acknowledge the fact of normality of grief in people with learning difficulties. She argued that people with intellectual disabilities have the same right to grieve as anyone else and she proposed some guidelines for facilitating this. It is only in recent decades that the issue has been recognised. But how much have we improved? Are we meeting the rights of people with intellectual disabilities regarding the loss and death of their close relatives? The answer is, probably, still not enough. Studies indicate that caregivers underestimate the impact of grief on individuals with intellectual disabilities, even when the person is able to express their sadness and anguish.
Efforts are needed to offer education and training to professionals and families for when they have to deal with those issues. Death education also needs to be available and introduced into the school and adult education curriculum for people with intellectual disabilities.