David O’Driscoll reflects on how we can help people with learning disabilities cope with bereavement.
There have been enormous changes for people with learning disabilities since one of the country’s first asylums opened in Abbots Langley near Watford, Hertfordshire in 1870. There was a lot of optimism when Leavesden opened its doors and a great belief in such institutions. They were meant to be a ‘happier place’, where people with learning disabilities would be protected from difficult issues, such as death or loss. In my historical research, I am always struck by how painful the admission process was for them and how little attention there was to the person’s feelings. Also what happened on a practical level when someone died? I was told that the ward was shut and the body was disposed of. The deceased often simply disappeared and it was very rare for the patients to be involved in any grief rituals. There was blindness or denial to the impact of this on the patients. It was not until the 1980s and the work of the social researcher Maureen Oswin that loss and bereavement was seriously thought about. It was truly a sad situation.
Vulnerability
Today, are we in a better place? It is a complex picture. We have a growing body of research on loss and learning disability which emphasises people’s vulnerability. We know that many people with learning disabilities have a lifelong history of loss, separation and abandonment. Some of this research into their end of life experience has highlighted how people with learning disabilities die, on average, 16 years before their counterparts without a disability, and more than a third of these deaths are avoidable.
There is concern about the overuse of medication. While I feel that there is a place for anti-depressants in helping a person adjust to their new reality, it seems that it is too easily prescribed at the first signs of difficulty. We also know that people with learning disabilities are more likely to miss out on attending a funeral or other rituals of significant figures in their lives. This is particularly so if they have a severe learning disability. As a result, there have been countless recommendations for services, many of which have guidelines today, hopefully including the right to take part in rituals.
Many services have also developed end of life plans. These are important as the service user’s adjustment can depend on their environment, family or, more often than not, support services. But for me the key element in supporting the bereaved person is developing a relationship to generate dialogue about their experience of loss, giving them opportunities to voice their sadness, anger and/or anxiety. Yet this too can cause anxiety for staff who may fear they are opening a ‘can of worms’.
Research has revealed that support services are not adequately prepared to identify negative reactions to bereavement. How should staff in support services help people with learning disabilities with their grief?
It is important to support their involvement in rituals. If the families are anxious about including them, find out what their concerns are and what the services can do to support them.
Talk to people about their experience. One way is by using a ‘grief stages model’. However, bereavement researchers today see limited value in it, claiming there is no research base and it that it is too simplistic to capture the complexity of the grief process.
There are several versions of this model widely known in health and social care circles. The bereaved person moves through stages: shock and denial, followed by anger, resentment and guilt, then, bargaining, maybe depression and finally acceptance. While there is no ‘one size fits all’ approach, a stages model can be useful to help staff contain their own anxiety whilst discussing with the service user their experiences. It should not be used diagnostically but could help generate conversation.
Practical methods
Current researchers have emphasised the importance of individual meaning for the therapeutic intervention and this framework can help. There are other practical methods such as life story books or the Books Beyond Words series (https://booksbeyondwords.co.uk).
Also key is the relationship with the deceased. We have moved away from the idea of letting go of the deceased as people still live on in our minds and we need to find ways to support and acknowledge this. One way would be for support services to have a bereavement life history of each service user, with experiences of past losses, positive and negative, to help future planning. I have seen a number of examples of the negative effects of poor post bereavement planning on people’s lives. If people need external support Cruse, the bereavement support service (www.cruse.org.uk), can be helpful with more straightforward grief reactions. For more complex reactions referral to a specialist learning disability service is recommended.
Loss and grief are fundamental to human life. Put simply, grief is the price we pay for love, and developing emotional bonds to people, places even possessions. Most of us adapt well to bereavement but it can be a sad place and we all need support at this painful time.
David O’Driscoll is a psychotherapist with Hertfordshire Partnership NHS Foundation Trust.
