Supporting Someone With a Learning Disability Through Grief

Everyone should have the opportunity to grieve. Some people may find it difficult to break sad news about a death to a person with a learning disability. This may be because they are concerned that the person will find the news distressing, or they are unsure whether the person has the capacity to understand what they are told.

Specialists and organisations who work closely with people with a learning disability agree that everyone has a right to know when someone significant in their lives has died.

For some people with a learning disability, the death of a close loved one may mean that they also face adapting to unsettling changes, from the provision of care and support, to the place where they live.

Being a part of the community who is grieving

Being a part of the sadness shared by a family or community when someone dies, is an important part of the grieving process. Grief and the way that we express our feelings, is unique to everyone.

However we grieve, being included in a group that has experienced the same loss, can help us to accept and process things better, during a time of disbelief and sorrow.

Saying goodbye

Saying goodbye to someone is one of the important stages of grief that we share with other people.

Having the opportunity to view the person who has died, may help some people to understand what has happened. But it is important that this is something that they want to do.

A funeral is also an opportunity to say goodbye and understand that someone we loved has died. Some people with a learning disability may prefer not to attend a funeral, while other people welcome the chance to be involved in arranging the funeral, helping with tasks including choosing funeral flowers, funeral hymns or preparing food for the wake. Our guide to wakes will really help you get acquainted with what's needed. Such rituals affirm the death and provide an opportunity for shared grief.

Signs of grief

People can express signs that they are grieving, or signal that they are finding it difficult to cope with grief, in many different ways.

If someone cannot express themselves verbally, a change in habits or certain types of uncharacteristic behaviour, may be a sign that they are grieving. Self- injury, anger, loss of appetite, restlessness, a need to be with you, or destructive behaviour can be among the signs that someone is finding it difficult to cope with their loss.

Talking about grief

Everyone has a different capacity for taking in information. People with a learning disability are no different. If you know the person well, you may have a good idea of how they process and remember the things you tell them.

Some people receive new information better, if they are given news in smaller chunks. Sometimes people may ask you to repeat the information you have given them

Terminal illness, death and grief can be complicated, sensitive subjects for all of us. For some people, difficult topics may be easier to understand within the context of people, situations and feelings they are already familiar with.

When someone dies, we can sometimes talk about death in an abstract way: “They have gone to a better place.” This kind of language can sometimes be confusing. Try to explore ways of breaking difficult news using words and phrases that can be taken literally.

Talking about grief in words and pictures

Storyboards and memory books are ways of communicating difficult subjects and sharing feelings that people are unable to verbally communicate, or find hard to express.

Access to Learning Disability Healthcare's Make a Difference Toolkit features an app called picTTalk, a communication tool which has been developed in six non-verbal languages, to help give people a voice in what’s happening in their lives.

The pictograms in the app can be used by people to have a conversation, or build a story around how they are feeling about someone’s death and what will happen next.

Memory books and memory jars with photos, drawings and tactile keepsakes are also concrete ways that people can remember the person who has died.

The process of making a memory book can be a good way of talking, or expressing feelings, about someone who has died. This can be comfort during the time that a bereaved person is grieving.

Emotional or difficult times at other stages in life can also bring back memories of someone we miss. Kept in an accessible place, a memory book or memory jar can be something to turn to, when situations bring a loved one who has died to mind.

Bereavement support

There are bereavement resources available to people with a learning disability who are coping with grief. There are also resources available to support parents and carers to help prepare someone for a loved one’s death and to help them cope with bereavement and talk about their feelings.

There is also help and information available to professionals who work with people with a learning disability, to support people coping with bereavement.

• Clinician Irene Tuffrey- Wijne, a specialist in palliative care for people with learning disabilities outlines breaking bad news and how to gauge the level of information you give someone, so that it is not too difficult to understand or overwhelming.

  Irene is also the chair of the National Network for Palliative Care of People with Learning Disabilities , which has a host of useful information and resources on its website. These include When I Die, a good example created by Sunderland People First, of how people with a learning disability can create their own end of life plan , in words and pictures.

• The British Institute of Learning Disabilities has a helpful factsheet to download, with useful guidelines for talking about death and bereavement with someone who has a learning disability. It shares ways of talking about what has happened when somebody dies and supporting them through the grieving process.

• The Down’s Syndrome Association has a guide for parents and carers to download, which explains the ways in which people with Down’s Syndrome may respond to someone’s death and how to support them through bereavement as they grieve.

• The National Autistic Society provides guidelines for parents and carers to support children and adults to understand and come to terms with illness, death and grief. It’s a model that can help form the basis of conversations with people who have autism and who may or may not have a learning disability.

• Keele University’s school of nursing and midwifery has a range of helpful resources to help people with a learning disability cope with change and bereavement, on its Access to Learning Disability Healthcare website. Its free picTTalk app can be downloaded from the Google Play and Apple App stores.

• PAMIS is a charity which supports people with profound and multiple learning disabilities and their families, across Scotland. It offers bereavement and loss resources for parents, carers and professionals on its website.

• Jenny’s Diary is a free to download booklet and a set of postcards aimed at supporting people who have a learning disability to have conversations about dementia.

• Marie Curie has five easy-read booklets to download, for people with a learning disability who are diagnosed with a terminal illness. They use words and pictures to cover a range of informative topics and talking points. Marie Curie has also produced an easy-read booklet series to support people with a learning disability to care for a loved one who has been given a terminal diagnosis.

• Cruse Bereavement Care has book recommendations to help people with a learning disability to understand and cope with grief.

• When Dad Died. This picture book is part of a series by Books Beyond Words to help people with learning and communication difficulties to explore and understand their own experience of grief. The series also includes the titles When Mum Died and When Somebody Dies.

• Remembering Lucy is a picture book for sharing with children with special educational needs aged three and up. It’s about how Joe thinks about all the wonderful things his friend Lucy did, to help cope with his feelings of sadness after she dies. Author Sarah Helton is a specialist in special educational needs, with a focus on loss and bereavement. This book includes a guide for teachers and support staff in schools to talk about bereavement, grief and loss.

Sarah is also the author of A Special Kind of Grief, a complete guide for teachers and carers supporting bereavement and loss in special schools and other special educational needs and disability (SEND) settings.

She has also developed a pack of flashcards , with pictograms created for parents and carers to start conversations with children and young people with a learning disability about loss and bereavement. They include symbols for talking about what it means when someone dies, what a funeral is for, exploring feelings, emotions and ways to feel comforted after a loss.