Supporting bereaved people with learning disabilities

This briefing is produced by Brake, the road safety charity. It aims to raise awareness of how people with learning disabilities experience grief, and provides advice on how to support them.

When people with learning disabilities are bereaved, their grief is often unrecognised and unsupported.[1] People with learning disabilities may be excluded from conversations about death and dying, and may have limited experience of the events and processes that follow a death, such as funerals.

Despite this, people with learning disabilities experience grief in a similar way to people without learning disabilities.

This report will provide guidance on communicating with people with learning disabilities after a death, and advice about how to support them.

This report will cover:

• stigma and exclusion experienced by bereaved people with learning disabilities;
• challenges in supporting bereaved people with learning disabilities;
• best practice advice on communication about death and loss; and
• advice on how to support bereaved people with learning disabilities through their grief.

This briefing is based on the research findings and support recommendations of Professor Sue Read (professor of learning disability nursing, University of Keele) at a webinar for victim support professionals.

Loss, bereavement and end-of-life care: how do we engage with people who have learning disabilities?

How is learning disability defined?

The official UK Department for Health definition (2001) states that a person with a learning disability will:

• have a reduced ability to understand new or complex information;
• struggle to learn new skills; and
• have difficulty coping independently.

The learning disability must also start before adulthood, and have a lasting developmental effect.[2]

The majority of people with a learning disability do not have a discrete condition, such as Down Syndrome. The severity of learning disabilities varies widely, from very profound to minimal.[3]

People with a learning disability carry a history of marginalisation, devaluation and stigma. However, it can be argued that people with learning disabilities have more similarities than differences to people without learning disabilities, particularly within the context of loss, death and bereavement.[4],[5]

Definitions of loss

People experience a number of changes and developments in their lives, and subsequent loss, transition and grief.[6]

Loss can be expected or unexpected, and is generally viewed as being a sense of being deprived of something.

A more recent definition, developed by Dr Linda Machin [7],[8], describes the following forms of loss:

Developmental loss

Everyone experiences developmental loss at some stage in their life. Examples include changing school, moving house or divorce.

Circumstantial loss

At its most severe, circumstantial loss includes bereavement. It also includes health challenges, such as severe ill health or losing a limb.

Invisible grief

Invisible grief is experienced by certain marginalised groups, including people with learning disabilities. It is often unrecognised. Invisible (or disenfranchised) grief can prevent people from receiving the support they need at the time they need it most.

Responding to loss and grief

The majority of bereaved people receive support from their immediate social context: friends, family and colleagues.[9] In most cases, people do not need specialist support or interventions.

A smaller number of people experience complicated or prolonged grief, and struggle to re-establish their lives after a bereavement.[10] Professional support will be required. A form of psychotherapy called ‘complicated grief therapy’ is often used to treat complicated grief.[11]

Accessing specialist support can be difficult for some groups of people, including those with learning disabilities. This can result in their grief being unsupported and unresolved.

Stigma and exclusion

People with learning disabilities are often excluded at the end of a friend or loved one’s life. This exclusion can make the death sudden, as opposed to anticipated, shocking and unexpected, and can cause problematic grief responses. A lack of social support can result in strong emotional reactions, such as guilt, anger and feelings of powerlessness.[12]

Social context and death

The social context of a death can also affect how someone responds to bereavement. A supportive environment, where grief is facilitated, can help people process loss in a healthy manner.

When people are prevented from communicating about bereavement, challenging grief responses can develop. Unfortunately, this can often occur for bereaved people with learning disabilities.

How do people with learning disabilities experience grief?

Bereaved people with learning disabilities will have typical reactions like anger, denial, sadness and guilt, and experience grief in a similar manner to people without learning disabilities.

However, bereaved people with learning disabilities often struggle to express and articulate their grief in a meaningful way. Support workers should be aware that any behavioural changes after a bereavement may indicate distress.

People with learning disabilities are also prone to multiple and successive losses, as a bereavement can result in a number of other changes. For example, the death of a carer could result in a person with learning disabilities having to move from their home, and adapt to a new environment.

What does research tell us about people with learning disabilities and bereavement?[13]

People with learning disabilities have a significantly poorer understanding of the concept of death

Research has found that people with learning disabilities may understand some of the basic concepts around the irreversibility of death, but may not understand what death really means.

One way to overcome this is to take people with a learning disability to see their loved one’s body following the death. It is important to ensure that the person with the learning disability is thoroughly prepared beforehand.

Support workers should:

• explain what the dead person will look like, and how the body will be presented;
• confirm that the dead person cannot speak, touch them or respond in any way; and
• be prepared to adapt to the needs of the individual.

End-of-life planning

People with learning disabilities are also often excluded from discussions about end-of-life planning. Combined with the general stigma and discomfort in society when talking about death, this may cause people with learning disabilities to have a greater fear of death.

Vulnerability from a death and dying perspective

People with learning disabilities are often actively excluded from conversations about death and dying.[14]

They may need more practical interventions to help them prepare for events and processes that take place after a death, such as funerals.[15] Many professionals lack the skills or confidence to talk to people with learning disabilities about such sensitive topics.

The more complex a person’s needs, the more likely they will be excluded from these processes.[16]

Disenfranchised grief

If a person with learning disabilities is excluded from conversations about death and does not receive the support or practical interventions they need to help them come to terms with the death, they may experience ‘disenfranchised grief’.[17] This occurs when someone’s grief is not recognised or supported.

Disenfranchised grief can be categorised as when:

• a relationship is not recognised;
• the loss and the griever are not recognised.

People may be reluctant to explain a death to a person with profound, multiple learning disabilities who does not communicate verbally, as they are unsure how they will receive and respond to this information.[18]

Even if a person may not understand all the information relating to a death, they still have the right to be told, preferably using clear information that they are more likely to understand.

Thinking about death and what it means

Todd & Read’s research[19] into experiences of people with learning disabilities who have been bereaved revealed that the people involved in their study experienced a number of losses; for many, it became a fundamental feature in everyday life. It also highlighted the normality in which death was discussed by bereaved people with learning disabilities.

Those involved in the study were not afraid to contemplate their own death. Instead, they were more concerned about how others might react – particularly their relatives. Support workers were surprised about the extent that death had impacted the lives of people with learning disabilities.

The research also found that people with learning disabilities were very open to talking about bereavement, and keen to share their experiences.

However, they had often been excluded during the ‘pre-bereavement period’ and had limited contact with dying people. While the people with learning disabilities in this study wanted to be involved, on many occasions they only found out that someone was dying after the death.

Supporting bereaved people with learning disabilities

Communication[20]

People with learning disabilities often lack the verbal skills and the vocabulary range to communicate their grief. Instead, they may demonstrate their grief in physical or behavioural ways. Actions such as withdrawal, deciding not to wash or not dressing can be indicative of grief.

Support workers may not feel comfortable in starting sensitive conversations about death and bereavement and may lack the confidence to do so.

Support workers may be uncertain about how many details a person with a learning disability has absorbed or understood. People with learning disabilities may also have difficulties concentrating or a limited attention span.[21]

There is a perception that counselling is a talking therapy only, which is not appropriate for people who have difficulty speaking or a limited vocabulary. Counsellors should consider other creative ways to communicate and give support, including using pictures, creating memory books or visiting cemeteries, which are more appropriate for people with learning disabilities.

Active listening, a communication technique which incorporates multiple senses and body language, should be used.

Support

One of the most helpful things a bereaved person with learning disabilities can be offered is full support. To avoid disenfranchised grief, their loss must be acknowledged, and emotional pain legitimised.[22]

Other things that are helpful include:

• sharing fears and anxieties;
• support groups;
• counselling; and
• spiritual support, where appropriate.

Rituals

The use of rituals can also be beneficial. These can include:

• funerals and rites of passage;
• rituals of continuity – such as lighting candles on certain days;
• rituals of transition – to mark change or development in an individual’s grief journey;
• rituals of affirmation[23] – to celebrate the memory and attributes of a deceased person; and
• rituals of reconciliation[24] – to allow a grieving person to offer or accept forgiveness, to provide a sense of closure.

Counselling

People with learning disabilities often have limited access to counselling services. When services are available, they may not be free. Counsellors may not have received training to support people with learning disabilities.[25]

However, many organisations are becoming more aware of the needs of people with learning disabilities, and recognise that more creative support (beyond generic counselling skills) may be required.[26]

Conclusions and recommendations

Death and dying are sensitive issues for everyone, whether you have a learning disability or not. For people with learning disabilities, bereavement can be particularly challenging.

Tips for providing effective support

• Collaborative working with a variety of professionals is key.
• Pre-bereavement care and support is very important. People with learning disabilities should have the chance to discuss their fears and concerns about death.
• Support workers should be aware that people with learning disabilities often experience transitional losses and these can go unnoticed.

Other advice to professionals

• Be humble. There is a lot we can learn from people with learning disabilities.
• Never be afraid to ask for help.
• People with learning disabilities experience death and dying in similar ways to people without learning disabilities. We need to communicate with them in a way that they understand and appreciate.
• Creating lasting bonds with the deceased is the best way to help remember them. For people with learning disabilities, these bonds might need to be physical and/or sensory. Pictures and life story books can be great tools.

About Professor Sue Read

Sue is Professor of Learning Disability Nursing, at the School of Nursing and Midwifery at the University of Keele. She has worked in the area of learning disability since 1976, and has a background in learning disability nursing. Her research interests are in bereavement, end-of-life care and transition and loss, specifically (although not exclusively) involving people with learning disabilities. Sue has published a number of books, chapters and journal articles around these areas.

References

[1] Read, S. and Elliott, D. 2003. Death and Learning Disability: a Vulnerability Perspective. The Journal of Adult Protection. [Online]. 5 (2), pp.5-14. [Online]. [Accessed 11/02/2019]. Available from: https://doi.org/10.1108/14668203200300002

[2] Department for Health. 2001. A New Strategy for Learning Disability for the 21st Century. [Online]. [Accessed 05/02/19]. Available from: www.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf

[3] NHS. 2018. Learning Disabilities. [Online]. [Accessed 05/02/19]. Available from: www.nhs.uk/conditions/learning-disabilities/

[4] Read, S. 2005. Loss, Bereavement and Learning Disability: Providing a Continuum of Support. Learning Disability Practice. 8 (1), pp. 31-37.

[5] Cartlidge, D. and Read, S. 2010. Exploring the Needs of Hospice Staff Supporting People with an Intellectual Disability: a UK Perspective. International Journal of Palliative Nursing. [Online]. 16 (2), pp. 93-98. [Accessed 05/02/19]. Available from: www.ncbi.nlm.nih.gov/pubmed/20220687

[6] Thompson, N. 2002. Loss and Grief: A Guide for Human Services Practitioners. Palgrave: Basingstoke.

[7] Machin, L. 2009. Working with Loss and Grief A New Model for Practitioners. London: Sage Publ

[8] Machin, L. 2014. Working with Loss and Grief: A Theoretical and Practical Approach. Second Edition. SAGE Publications: London.

[9] Worden, J. 2009. Grief Counselling and Grief Therapy. Routledge: Abingdon.

[10] Shear, M. et al. 2011. Complicated Grief and Related Bereavement Issues for DSM-5. Depression and Anxiety. [Online]. 28 (2), pp. 103-117. [Accessed 05/02/19]. Available from: www.ncbi.nlm.nih.gov/pubmed/21284063

[11] Mayo Clinic. 2017. Complicated Grief – Diagnosis and Treatment. [Online]. [Accessed 12/02/2019]. Available from: www.mayoclinic.org/diseases-conditions/complicated-grief/diagnosis-treatment/drc-20360389

[12] Corr, C. 1999. Enhancing the Concept of Disenfranchised Grief. OMEGA – Journal of Death and Dying. [Online]. 38 (1), pp. 1-20. [Accessed 12/02/2019]. Available from: https://journals.sagepub.com/doi/abs/10.2190/LD26-42A6-1EAV-3MDN

[13] Stancliffe, R. et al. 2016. Knowing, Planning for and Fearing Death: Do Adults with Intellectual Disability and Disability Staff Differ? Research in Developmental Disabilities. [Online]. 49-50 (2016), pp. 47–59. [Accessed 05/02/19]. Available from: www.sciencedirect.com/science/article/pii/S089142221530010X?via%3Dihub

[14] Read, S. and David, E. 2003. Death and Learning Disability: a Vulnerability Perspective. The Journal of Adult Protection. [Online]. 5 (1), pp. 5-14. [Accessed 05/02/19]. Available from: https://doi.org/10.1108/14668203200300002.

[15] Forrester-Jones, R. 2013. The Road Barely Taken: Funerals, and People with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities. [Online]. 26 (3), pp. 243-256. [Accessed 05/02/19]. Available from: http://onlinelibrary.wiley.com/doi/10.1111/jar.12022/abstract

[16] Read, S. and David, E. 2003. Death and Learning Disability: a Vulnerability Perspective. The Journal of Adult Protection. [Online]. 5 (1), pp. 5-14. [Accessed 05/02/19]. Available from: https://doi.org/10.1108/14668203200300002.

[17] Doka, K. 1989. Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington: MA

[18] Doka, K. 1999. Disenfranchised Grief. Bereavement Care. [Online]. 18 (3), pp. 37-39. [Accessed 11/02/2019]. Available from: www.tandfonline.com/doi/abs/10.1080/02682629908657467

[19] Todd, S. and Read. S. 2010. Thinking about Death and what it Means: The Perspectives of People with an Intellectual Disability. International Journal of Child Health and Human Development. [Online]. 3, pp. 87-92. [Accessed 05/02/19]. Available from: https://bit.ly/2YFLLUI

[20] Kerr, M. et al. 1996. Primary Health Care for People with a Learning Disability. British Journal of Learning Disabilities. [Online]. 24 (1), pp. 2-8. [Accessed 05/02/19]. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3156.1996.tb00192.x/full

[21] Kitching, N. 1987. Helping people with mental handicaps cope with bereavement: A Case Study with Discussion. British Journal of Learning Disability. [Online]. 15 (2), pp. 60-62. [Accessed 05/02/19]. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3156.1987.tb00395.x/abstract

[22] Doka, K. 2002. Ed. Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice. Champaign, IL: Research Press.

[23] Doka, K. 2016. The Use of Therapeutic Ritual. In: Doka, K and Tucci, A. Eds. Managing Conflict, Finding Meaning: Supporting Families at Life’s End. Washington, DC: Hospice Foundation of America, pp. 133-138.

[24] Doka, K. 2002. Ed. Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice. Champaign, IL: Research Press.

[25] Conboy-Hill, S. 1992. Grief, Loss and People with Learning Disabilities. In: Conboy-Hill, S. and Waitman, A. eds. Psychotherapy and Mental Handicap, pp. 150-170. London: Sage.

[26] Read, S. and Elliot, D. 2007. Exploring a Continuum of Support for Bereaved People with Intellectual Disabilities: A Strategic Approach. Journal of Intellectual Disabilities. [Online]. 11 (2), pp. 167-181. [Accessed 05/02/19]. Available from: https://doi.org/10.1177/1744629507076930