Supporting people with learning disabilities through grief

Beth Britton, Consultant for MacIntyre’s Dying to Talk Project, explains how the project is supporting people with learning disabilities who have experienced a bereavement

By Beth Britton · June 30, 2022

The death of someone close to us is something that we will all experience at some point in our lives. Feelings of grief and bereavement are a natural reaction for everyone, including people with learning disabilities, and yet in the past a common view was that a person with a learning disability won’t be affected by the death of someone close to them.

At MacIntyre, our Dying to Talk Project  is aiming to change this narrative and develop resources and good practice examples to support people with a learning disability who are bereaved.

How a person with a learning disability may experience grief and bereavement

We know from our workshops and 1-1 sessions with people who have a learning disability that grief and bereavement can affect them just as deeply as anyone else might be affected, and that – like all of us – there is no time-frame for their own personal grieving process.

What is different for many of the people we support, however, is that they often struggle to express their feelings and emotions. This can lead to them being bottled up, expressed as behaviours of concern, or becoming triggers for mental health problems like depression.

What we are aiming to do with the Dying to Talk Project is enable the people we support who have been bereaved to work through their feelings and emotions with specially trained staff. We are also supporting families through our workshops and resources to find ways to engage with their adult children or siblings who have experienced a death.

Throughout all of our work is an emphasis on having an ‘open door’ culture, understanding that conversations will need to be revisited (perhaps multiple times), and that a consistent and supportive approach is taken no matter who has future interactions with a person about their feelings and emotions.

Reflections from our work so far

In our case study with mum Jo and her daughter Jess we’ve documented their experiences around grief and bereavement.

Jess has experienced three grandparents dying, the most recent being her maternal granddad in 2021. His death was very difficult for Jess, as she couldn’t see him for a long time because of COVID-19. Jess managed to visit him three weeks before he died, and when he died Jo made sure she told Jess face-to-face not over the phone. Jess is learning to live with her bereavement, but cries a lot and texts ‘I miss granddad’ messages to her mum. Jo always talks through Jess’ feelings with her.

Jo has encouraged and supported Jess to express her grief creatively. Jess writes poems about people in her life who mean a lot to her and/or who have died. These are often celebratory or humorous. She always finishes with ‘I miss you’ (and cries).

In our blog by Rachel Furniss, Dying to Talk Project Lead , Rachel explains how a small group workshop with Sharon, John and Steven helped them to express their grief through conversations and creating remembrance artwork:

“John said that his mum was very religious and went to church every week. I asked if John’s mum’s funeral was at a church and he brought out the order of service for the funeral. He said: ‘I like to keep it as a reminder of my mum and what she liked.’”

Rachel reflected on the workshop afterwards and described her experiences.

“Our time together remembering the people that Sharon, John and Steven had loved and lost was a rollercoaster of emotions. During our two hours we laughed and cried, and talked about how it was ok to feel sad and that we should talk about our feelings as staff may be able to help.”

“How Sharon, John and Steven reacted proved to me how important it is that the people we support have opportunities to talk through their emotions and grief like anyone else might.”

Rachel, Dying to Talk Project Lead

Key themes

Two key themes have so far emerged from our Dying to Talk workshops and 1-1 sessions.

1. Feeling sad

People supported almost universally describe feeling ‘sad’ when talking about the death of someone close to them. This could easily be dismissed, but it’s important to consider that behind the expression ‘I feel sad’ may be many other emotions that the person can’t find the words to express. Careful, empathic exploration around the idea of feeling ‘sad’ can help someone to express other emotions (and perhaps explain actions), and find relief and support in doing so.

Rachel (Dying to Talk Project Lead), recently had a conversation with John about how his grief made him feel sad. He explained:

“I’m sad. I miss my dad. I like to sit in the kitchen and have a cup of tea and talk to him. It helps me remember. It’s worse this time because now I have no mum or dad.”

2. Grief for pets

The people we support often feel the death of a pet very acutely, sometimes using stronger language and showing more emotion than when talking about a person who has died. This is a reminder that grief comes in many different guises, and being aware of that is vital in providing the best support for a person.

Resources that can help

We have extensively used the Books Beyond Words ‘When Somebody Dies’  resource with the people we support to open up conversations about how they might be feeling after the death of someone in their family or wider circle of support. We’ve also used Grave Talk cards.

In our staff training we have shared grief and bereavement resources that include:

We’ve also signposted our staff to sources of support in their training handout that include Cruse, The Good Grief Trust , Mind  and Marie Curie.

Would you like to know more about the Dying to Talk Project?

We are keen to hear from anyone who would like to learn more about the Dying to Talk Project. Please email: [email protected].