Launch of Respond Elder’s Project

Just like the rest of the population, people with learning disabilities are living longer. This means that they are more likely to experience bereavements and become aware of their own mortality. They also have an increased risk of developing dementia, especially people with Down’s syndrome, and other illnesses with a long dying phase. These experiences can cause anxiety for all involved, and this is what Respond’s Elder’s project aims to address.

It is hard for all of us to accept our own mortality, but for some people with a learning disability, who may not have experienced the benchmarks of life that we look back on, in order to gain some sort of value to our lives, such as marriage, a career, and having children, it can be more difficult.

Many people are also denied participation in important rituals when family members and peers die. Attendance at funerals is often dismissed by carers as too upsetting, even though it can be an essential part of grieving.

It is also natural to wonder what we will ‘leave behind’ when we die. Some people with learning disabilities may question if they will be missed at all, who by, and if anyone would attend their funeral.

As part of Respond’s Elder’s project, we have established ‘Loss & Change Groups’. These are informal discussion groups, which may include field trips, about growing older and dying, for people with a learning disability, and the carers and staff that support them. One such group has been established at Hornbeams Day Centre in Hertfordshire.

The group ranges in number between six and eight people with a learning disability and generally two of the staff that support them. Respond facilitators work with the staff to set the groups up and assist the staff over eight weeks in order that they can then continue to run them on their own.

The group members talk about the life cycle, which often provoke their own stories of loss, and there is a chance to share and talk about feelings and find out that other people have had similar experiences.

The group has had various field trips, including going to a graveyard and a crematorium. The group has also visited an undertaker’s, in order to learn about death rituals which people with learning disabilities can so easily miss out learning about.

Noëlle Blackman, Manager of the Elder’s Project, and Assistant Director of Respond, said "Older people with learning disabilities have been doubly marginalised by society, the support which is offered to them needs to be radically improved as they grow older to take account of their changing needs. Respond is pleased to be able to offer this support that is so badly needed for both older people with learning disabilities and their carers."

‘Positive Images’
Learning Disability Practice
Nov 2005