Supporting people with learning disabilities through bereavement

Key points for carer givers from Professor Sheila Hollins:

  1. Listen and simply be there with the grieving person. There are lots of different ways to allow conversations about bereavement to happen. Don't close down conversations that are painful or difficult. Notice non verbal communication that expresses grief such as sounds, non verbal postures, facial gestures.
  2. Be honest, explain and find a way to communicate e.g. by looking at photographs, using pictures and stories. Involve the person with learning disability for example in the funeral. Give them a meaningful role such as standing up with a photograph and saying this is my mum or dad. Pictures can be a helpful prompt for these conversations e.g. these e-books.
  3. Keep routines as stable and normal as possible.
  4. Chose non verbal rituals such as music, mime or flowers. 
  5. Respect photos and momentos of the persons own choice.
  6. Assist visits to familiar places in 'search' of the lost person. Help people to look and remember. 
  7. Seek specialist consultation if worrying behavioural changes persist.
  8. Help those who have experienced loss to remember important anniversaries e.g. through a photobook or by visiting certain places.

Please see the Marie Curie easy read guide (see downloads) which explains death and feelings you may have when someone dies

Recommended Resources

Beyond words

Published 1st January 2025

PCPLD Network - Supporting people with learning disabilities in Bereavement webinar

Published 9th February 2021

Share

Downloads

Related Services

Bereavement services for adults

At a Loss
Close

Bereavement support for all ages including children.

Bereavement Support available with a bereavement counsellor online: https://www.ataloss.org/live-chat

Bereavement Advice Centre
Close

Bereavement Advice Centre

W. https://www.bereavementadvice.org/

Bereavement Advice Centre provides practical help when you need it most. They support and advise people on what they need to do after a death.

Bereavement Support at Royal Trinity Hospice
Close

Bereavement Support at Royal Trinity Hospice

T. 020 7787 1000

W. https://www.royaltrinityhospice.london/bereavement-support

The Bereavement team supports family members, friends, children and carers through the emotional impact of grief. The support is available to anyone who has experienced the death of a loved one who was cared for by the Hospice. 

The Bereavement team offer support specifically for children and guidance to parents on how to explain death and grief to children.

Child Bereavement UK
Close

Child Bereavement UK

T. 0800 02 888 40

W. https://www.childbereavementuk.org/

Offer a telephone support service for bereaved young people up to age 25, their families/ carers or individuals or families who have lost a child. 

The support team is available to respond to calls, Live Chat or email from 9.00am to 4.30pm, Monday to Friday excluding bank holidays.

Child Death Helpline
Close

Child Death Helpline

T. 0800 282 986

W. http://childdeathhelpline.org.uk/

Child Death Helpline is operated by a dedicated team of volunteers who are all bereaved parents. The helpline provides support to a parent who has lost a child of any age, under any circumstances, and however recently or long ago, we’re here to help. They also offer support to grandparents, siblings and the extended family, as well as professionals who have been impacted by the death of a child.

CRUSE Bereavement care
Close

CRUSE Bereavement care

T. 0808 808 1677

W. http://www.cruse.org.uk/

CRUSE Bereavement care helps people through bereavement with support, information and campaigning.

Jewish Bereavement Counselling Service
Close

Jewish Bereavement Counselling Service

T. 020 8951 3881

W. https://jbcs.org.uk/

Jewish Bereavement Counselling Service has counsellors that understand the specific issues raised by bereavement within a Jewish context. This service is sensitive, aware and knowledgeable about social, cultural and religious needs.

Lullaby Trust
Close

Lullaby Trust

T. 0808 802 6868

W. http://www.lullabytrust.org.uk/

The Lullaby Trust raises awareness of sudden infant death syndrome (SIDS), provides expert advice on safer sleep for babies and offers emotional support for bereaved families.

Muslim Bereavement Support Service
Close

Muslim Bereavement Support Service

T. 020 3468 7333

W. https://www.ataloss.org/faqs/muslim-bereavement-support-service

The Muslim Bereavement Support Service supports Muslim women who are facing bereavement and/or are bereaved. They will speak with Muslim men and signpost them to appropriate bereavement support. 

Stillbirth and neonatal death
Close

Stillbirth and neonatal death

T. 0808 164 3332

W. https://www.sands.org.uk/

Stillbirth and neonatal death (Sands) is the leading stillbirth and neonatal death charity in the UK. They ensure that anyone affected by the death of a baby receives the best possible care and support for as long as they need it. 

Sands provides bereavement support services both nationally through its Freephone helpline, mobile app, online community and resources, and locally through a UK-wide network of around 100 regional support groups. 

Sudden Unexplained Death in Childhood Foundation
Close

Sudden Unexplained Death in Childhood Foundation

W. https://sudc.org/

The Foundation is a worldwide organisation, American based, whose purpose is to promote awareness, fund research and serve those affected by sudden unexplained death of children.

Sue Ryder Grief Support
Close

Online expert information provides ways to deal with the practical and emotional issues after someone has died.

The online Bereavement Community is a place to share experiences, get things off your chest and chat to people who understand.

Grief Guide is a safe space, free from other distractions where you can find self-help tools and information to help you cope with grief.

Talk to a qualified counsellor by video, up to 6 online sessions, at times that suit you speak from the comfort of your own home.

Survivors of Bereavement by Suicide
Close

Survivors of Bereavement by Suicide

T. 0300 111 5065

W. https://uksobs.org/

Survivors of Bereavement by Suicide are a national charity providing dedicated support to adults who have been bereaved by suicide. The volunteers come from all walks of life but nearly all have been touched by suicide themselves, this experience enables them to connect with others.

The Bereavement Journey
Close

The Bereavement Journey runs an online course three times per year for anyone in the UK who isn’t able to access an in-person course near to where they live, or who would prefer an online course.

The Compassionate Friends
Close

The Compassionate Friends

T. 0345 123 2304

W. https://www.tcf.org.uk/

The Compassionate Friends (TCF) is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members who have suffered the death of a child or children of any age and from any cause.

Get support using the telephone helpline or online support groups.

The Good Grief Trust
Close

The Good Grief Trust helps all those affected by grief in the UK and brings bereavement services together, to ensure that everyone receives the tailored support they need to move forward with their lives.

The trust is run by the bereaved, for the bereaved and aim to normalise grief and raise awareness of the impact of grief on a national platform. 

 

Widowed and young
Close

Widowed and young

T. 0300 201 0051

W. http://www.widowedandyoung.org.uk/

Widowed and young (WAY) is a UK charity that offers a peer-to-peer support network for anyone who's lost a partner before their 51st birthday – married or not, with or without children, inclusive of sexual orientation, gender, race and religion.

Young lives vs Cancer
Close

Young lives vs Cancer

W. https://www.younglivesvscancer.org.uk/

Young lives vs Cancer support young people under 25 with cancer, and their families, to get the help they need during their cancer treatment and beyond, including bereaved families living with emotional distress. 

Young Minds
Close

Young Minds is a national charity which supports both young people, their parents and loved ones through loss.

Bereavement services to support children

At a Loss
Close

Bereavement support for all ages including children.

Bereavement Support available with a bereavement counsellor online: https://www.ataloss.org/live-chat

Bereavement Advice Centre
Close

Bereavement Advice Centre

W. https://www.bereavementadvice.org/

Bereavement Advice Centre provides practical help when you need it most. They support and advise people on what they need to do after a death.

Bereavement Support at Royal Trinity Hospice
Close

Bereavement Support at Royal Trinity Hospice

T. 020 7787 1000

W. https://www.royaltrinityhospice.london/bereavement-support

The Bereavement team supports family members, friends, children and carers through the emotional impact of grief. The support is available to anyone who has experienced the death of a loved one who was cared for by the Hospice. 

The Bereavement team offer support specifically for children and guidance to parents on how to explain death and grief to children.

Child Bereavement Network
Close

Child Bereavement Network

W. https://childhoodbereavementnetwork.org.uk/

The Childhood Bereavement Network (CBN) is the hub for those working with bereaved children, young people and their families across the UK. Support is provided by the network members.

Child Bereavement UK
Close

Child Bereavement UK

T. 0800 02 888 40

W. https://www.childbereavementuk.org/

Offer a telephone support service for bereaved young people up to age 25, their families/ carers or individuals or families who have lost a child. 

The support team is available to respond to calls, Live Chat or email from 9.00am to 4.30pm, Monday to Friday excluding bank holidays.

Child Death Helpline
Close

Child Death Helpline

T. 0800 282 986

W. http://childdeathhelpline.org.uk/

Child Death Helpline is operated by a dedicated team of volunteers who are all bereaved parents. The helpline provides support to a parent who has lost a child of any age, under any circumstances, and however recently or long ago, we’re here to help. They also offer support to grandparents, siblings and the extended family, as well as professionals who have been impacted by the death of a child.

CRUSE Bereavement care
Close

CRUSE Bereavement care

T. 0808 808 1677

W. http://www.cruse.org.uk/

CRUSE Bereavement care helps people through bereavement with support, information and campaigning.

Grief Encounter
Close

Grief Encounter is a national charity offering a free helpline and online support for children and young people wishing to access bereavement support.

They also offers counselling support in classrooms, online or at their premises in North London. A referral form is available on their website.

Jewish Bereavement Counselling Service
Close

Jewish Bereavement Counselling Service

T. 020 8951 3881

W. https://jbcs.org.uk/

Jewish Bereavement Counselling Service has counsellors that understand the specific issues raised by bereavement within a Jewish context. This service is sensitive, aware and knowledgeable about social, cultural and religious needs.

The Good Grief Trust
Close

The Good Grief Trust helps all those affected by grief in the UK and brings bereavement services together, to ensure that everyone receives the tailored support they need to move forward with their lives.

The trust is run by the bereaved, for the bereaved and aim to normalise grief and raise awareness of the impact of grief on a national platform. 

 

Winston's Wish
Close

Winston's Wish

T. 08088 020 021

W. https://www.winstonswish.org

Winston's Wish is a national charity offering a free helpline and online support for children and young people wishing to access bereavement support.

They also provide resources and further training for schools and healthcare professions.

Young lives vs Cancer
Close

Young lives vs Cancer

W. https://www.younglivesvscancer.org.uk/

Young lives vs Cancer support young people under 25 with cancer, and their families, to get the help they need during their cancer treatment and beyond, including bereaved families living with emotional distress. 

Young Minds
Close

Young Minds is a national charity which supports both young people, their parents and loved ones through loss.

Support with advance care planning

Marie Curie
Close

Marie Curie

T. 0800 090 2309

W. https://www.mariecurie.org.uk/

Marie Curie provide support for patients and carers through terminal illness.

Find information and support through the telephone helpline and online chat via their website.

Other services include Marie Curie nurses, Hospice care, helper and companion services.

Young Minds
Close

Young Minds is a national charity which supports both young people, their parents and loved ones through loss.

Wellbeing services

Marie Curie
Close

Marie Curie

T. 0800 090 2309

W. https://www.mariecurie.org.uk/

Marie Curie provide support for patients and carers through terminal illness.

Find information and support through the telephone helpline and online chat via their website.

Other services include Marie Curie nurses, Hospice care, helper and companion services.

Feedback