This focus aligns with the general themes of the Dying to Talk Project, which are all about breaking down barriers and challenging the concept that people with learning disabilities don’t want to be involved in these discussions. Enabling people with learning disabilities to have a voice and be heard, especially around dying, death and bereavement, has been a huge part of my research work for over 20+ years, and through the Dying to Talk Project we are seeing many important and interesting outcomes that feed into my professional understanding. 

These include:

Talking about dying is welcomed by people who have learning disabilities

The Dying to Talk Project has received a huge amount of positive feedback from people with learning disabilities. They feel good at the end of the conversations they are being supported to have and want to continue. This includes people who previously said they didn’t like to talk about dying.

People are making an active choice to talk about how those close to them have died; about funerals they’ve been to; about people being ill and dying; and about what they would want in those situations. We must do all we can to support these conversations as and when people want to have them.

Talking about dying with people who have learning disabilities can be done in a way that is non-threatening… and even fun

With careful thought, preparation and facilitation, and active listening to both verbal and non-verbal communication, we can comprehensively support people with differing needs and abilities. We must always be flexible, adapting our content and/or approach as needed for individuals and groups.

Talking about dying with people who have learning disabilities is most effective and empowering if we ALL talk about it together

This means that all group members, including facilitators, should take part in activities. In addition, people with learning disabilities should be empowered to take part as equal members of groups.

For example, people with learning disabilities are often good at supporting someone who is sad or distressed. We have found that people with learning disabilities are often able to be role models, talking plainly and openly about death and dying without euphemisms, and this must always be supported.

If people are crying or upset, this doesn’t mean that they want to (or should) stop talking about death and dying

In fact, in the Dying to Talk Project we have found that the opposite is true. Several people got upset in the workshops I facilitated, sometimes sobbing about memories of loved ones who had died. However, this was explored and everyone affected was given a real option to continue or stop. They all chose to stay and continue.

An example is a woman who asked to listen to a song that reminded her of someone she loved who had died. She cried and cried, but was insistent that we shouldn’t turn the music off as she wanted to carry on crying. 

In another example, people were upset about the Books Beyond Words ‘Am I going to Die?’  picture story (as the man in the pictures is dying), but when we asked whether they wanted to carry on looking at pictures and talking about the story, they unanimously picked up the YES signs.

Each group (and each person) is different

The same content and resources can have very different outcomes within each group. This is highly unpredictable. In my workshops we were surprised to find that people who might be thought of as less able to articulate their thoughts or engage with difficult topics were in fact highly engaged. Others, who were expected to talk a lot, talked less. It is important not to make any assumptions about someone’s (in)ability to take part in end-of-life discussions, including staff and family members who may find this topic very difficult themselves.

What’s next?

The Dying to Talk Project has put MacIntyre in an excellent position to find and share ways in which the process of end of life/advance care planning can be incorporated into the general support of people with learning disabilities. This will be important learning for the Victoria and Stuart Project, which both MacIntyre and myself are involved with.

I am hugely impressed with what MacIntyre have achieved through the Dying to Talk Project so far. It has been a pleasure and a privilege to be involved with this Project, and I look forward to continuing to support this work and seeing how it develops further.

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