Offering support
Support may come from many directions, and carers may be involved with both offering and facilitating support to the bereaved individual. Finding out what the person knows, and needs, and identifying how such needs can be met is the first step. Carers should actively listen to the individual (using body language, eye contact, facial expressions) to look for common responses to loss and perceived difficulties in grieving. Grief responses involving people with learning disabilities are often delayed due to limited cognition, a lack of accurate information and the person's inability to ask for what he/she may need. Therefore information about the death needs to be recorded in an accessible and permanent way, and carers need to be aware that grief responses may take months and sometimes years to surface. Sometimes, carers may not be in the best position to offer support and may need to seek alternative help such as counselling (see earlier section on when to refer on).

Practical support may involve offering people the choice to participate in the rituals surrounding death, thus enabling them to say goodbye to their loved ones in a way in which they feel comfortable. This may include finding out about funeral arrangements and explaining these in a way that the person understands, and also contacting appropriate people who need to know about the death. This would serve to minimise the disenfranchising effects described by Doka (1989). When accessing alternative support, carers may need to make contact with, for example, the clergy, bereavement counsellors, community learning disability nurses, and social workers, to facilitate this need. Carers should help the bereaved person to establish and maintain tangible, meaningful memories of the deceased in the form of photographs, life books and memory books. Bereaved people often find comfort in personal keepsakes such as clothing, jewellery, music and perfumes, which are powerful reminders of the deceased This is in keeping with the promotion of continuing bonds (Klass et al, 1996), as referred to earlier. Many people may find comfort in visiting the grave, or other similar memorial, and time should be set aside for these important visits.

The family and friends of the person with a learning disability may be grieving too, and may need help and support at this sensitive time. Offering support to bereaved people may be difficult, and the needs of those providing support should not be overlooked. Professional carers may need a regular shared opportunity to talk about such difficulties in a confidential and supportive environment, or need to seek individual support (such as clinical supervision). Because of the diverse needs of people with learning disabilities, consistency of support is crucial. This booklet, in conjunction with the two accompanying leaflets, have been developed to ensure that support is delivered in a clear, consistent and meaningful way.

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