THE ELDERS PROJECT

BOOKS AND PACKS TO USE AS TOOLS

Cathcart, F. (1994) Understanding Death and Dying (Series).Worcestershire: British Institute of Learning Disabilities.
A series of three books each explaining death and dying in a straightforward way. Targeted at three different groups: people with learning disabilities, staff and professionals, and a third for families.

Cooley, J. & McGauran, F. Talking Together about Death – A bereavement pack for people with learning disabilities, their families and carers. Bicester, UK: Speechmark Publishing
A pack of sets of black – and – white illustrated cards, depicting the life-cycle and various aspects of death and mourning: such as a graveside scene, a coffin etc. Includes a user’s guide.

Heegaard, M (1988) When Someone Very Special Dies USA: Woodland Press
A workbook designed for children, which encourages drawing and simple written pieces about feelings.

Holland, A., Payne, A. and Vickery, L (1998) Exploring your Emotions Worcesteshire, UK: British Institute of Learning Disabilities.
A set of 30 colour photographs illustrating common emotions that can be used as a tool to help people talk about and reflect upon feelings. A manual is included.

Hollins, S. & Sirenling, L (1991) Understanding Grief: DWorking with Grief and People who have Learning Disabilities. Pavillion Publishing Brighton UK
A training pack which can be used for families and carers of a bereaved person with learning disabilities. The pack includes a video and a copy of when Dad Died (a book beyond words, see below)

Books Beyond Words
There are several books in the Books beyond Words Series (St George’s Hospital Medical School, London SW17). This series of books tell stories of important and often difficult life themes, including death and bereavement, in pictures. Some of these are listed bellow:

Hollins, S & Sireling, L. (1989) When Dad Died London: St George’s Mental Health Library.

Hollins, S & Sireling, L. (1989) When Mum Died. London: St George’s Mental Health Library.

Hollins, S., Dowling, S. & Blackman, N. 92003) When Somebody Dies. London: St George’s Mental Health Library.

Luchterhand, C. & Murphy, N. (1998) Helping Adults with Mental Retardation Grieve a Death Loss Accelerated Development (USA): Taylor and Francis (UK)
This book lists plenty of ideas for supporting people with learning disabilities as they cope with bereavement.

Persaud, S. & Persaud, M (2003) Loss and Bereavement for People with Learning Disabilities. Derbyshire NHS Mental Health Services NHS Trust. Wordsmith Publications. Buckingshire. UK.
A bereavement information pack which aims to provide carers of people with learning disabilities with some practical indicators which will enable the to support people who have experienced loss or bereavement. It contains pictures, signs and symbols to be used as a resource.

Slater, D. & De Wit, M. (1999) Rediscovering Our Selves: The recovery and communication of the lived experience of people with learning disabilities. Brighton, UK: Pavilion Publishing.
A training pack and video that promotes creative ideas for reminiscence with people with learning disabilities.

Stuart, M. (1997) Looking Back, Looking Forward: Reminiscence with people with learning difficulties. Brighton, UK: Pavilion Publishing.
A training pack which encourages the use of reminiscence with people with learning disabilities.

VIDEOS

Speak Up Self Advocacy. (1997) Coping with Death

Speak Up Self Advocacy, 43 Holm Flatt Street, Rotherham, South Yorkshire, S62 6HJ. Tel 01709 710199
A video made by and for people with learning disabilities. It explains what happens when somebody dies.

SERVICES

Cruse Bereavement Care is the national organisation for bereavement people. Many counsellors are now offering their services to people with learning disabilities.
Contact: Cruse Bereavement Care, Cruse House, 126 Sheen Road, Surrey TW9 1UR. Tel. 020 8939 9530

Day by Day is the Cruse National Helpline 0870 167 1677
Helpline@crusebereavement.co.uk, provides support and information about local bereavement counselling services. It is worth contacting local bereavement services to find out whether they offer counselling to people with learning disabilities. If they not, this could be because they have not thought of it before. With the right support, they may consider it (see Chapter 10).

Respond helpline 0808 808 0700
Support people with learning disabilities, their carers and professionals around any issue of trauma, including bereavement.

Most community learning disability teams should be able to offer some bereavement counselling from their psychology services, art therapies practitioners and/or counsellors or psychotherapists who make up their team.

Useful articles and books

*= key reading

Atkinson, D., Jackson, M. & Walmsey, J. (1997) Forgotten Lives: Exploring the History of Learning Disabilities Kedderminster, UK: BILD
Accounts of lives in the long stay learning disabilities institutions of the twentieth century.

Blackman, N. (Ed.) (1999) Living with Loss: Helping people with Learning Disabilities Cope with Bereavement and Loss. Brighton, UK: Pavilion Publishing (out of print)
A series of chapters describing pioneering work and experiences in the field of loss and people with learning disabilities.

*Blackman, N. (2003) Loss and Learning Disabilities. London. UK: Worth Publishing
A comprehensive exploration of the issue of Loss for People with Learning Disabilities, with practical examples taken from case studies.

*Blackman, N. & Todd, S. (2005) Caring for People with Learning Disabilities who are Dying. London. UK: Worth Publishing

Day, P. and Smith, J. (?) Learning about life’s changes and working through loss Practice vol. 8 no 1.
A useful paper which describes the setting up and operation of a group which was set up in a day centre. It aimed to help with learning disabilities understand gains and losses at different life stages.

*Hodges, S. (2003) Counselling Adults with Learning Disabilities Hampshire, UK: Palgrave
A comprehensive guide for counsellors considering working with people with learning disabilities.

*Nottingham Healthcare NHS Trust Learning Disabilities Directorate (1999) – Bereavement Guidelines.
An excellent guide for residential services. It offers recommendations for good practice in the management or bereavement experienced by residents.

*Sinason. V (1992) Mental Handicap and the Human Condition. Free Association Books.

Persaud, S. and Persaud, M. (1997) Does it hurt to die? A description of bereavement work to help a group of people with learning disabilities who have suffered multiple, major losses Journal of Learning Disabilities for Nursing, Health and Social Care 1 (4) 171 -175
A paper describing a death education group for people with learning disabilities.