For many older people with a learning disability, changing circumstances such as moving home or the death of a friend are a source of stress and anxiety. At times of change support from familiar people is particularly important.
People with a learning disability will cope better with bereavement, and will be more able to think about their own death if they have already been given accurate information and opportunities to discuss their concerns about death and dying. It can be a good idea to use everyday events such as the death of a neighbour's pet or an incident on the television to start a discussion about death and dying.
Blackman, N (2003) Loss and Learning Disability. London Worth Publishing
Blackman, N (2008) The development of an assessment tool for the bereavement needs of people with learning disabilities. British Journal of Learning Disabilities, Volume 36, Issue 3, pp165–170
Dodd, PC and Guerin, S (2009) Grief and bereavement in people with intellectual disabilities. Current Opinion in Psychiatry, Vol.22, pp442–446
Forrester-Jones, R (2013) The road barely taken: funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, Vol 26(3), pp243-256
Handley, E and Hutchinson, N (2013) The experience of carers in supporting people with intellectual disabilities through the process of bereavement: an interpretive phenomenological analysis. Journal of Applied Research in Intellectual Disabilities, Vol 26(3), pp186-194
Miodrag, N et al (2013) Deaths among children, adolescents, and young adults with Down syndrome. Journal of Applied Research in Intellectual Disabilities, Vol 26(3), pp207-214
Read, S et al (2013) Using action research to design bereavement software: engaging people with intellectual disabilities for effective development. Journal of Applied Research in Intellectual Disabilities, Vol 26(3), pp195-206
Todd, S (2013) ‘Being there’: the experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities,
Vol 26(3), pp215-230
Tuffrey-Wijne, I et al (2013) Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, Vol 26(3), pp231-242
Tuffrey-Wijne, I (in press) A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, p21
Resources and web links
A website on supporting people with learning disabilities through bereavement:
BILD: Factsheet on Loss, Bereavement and Death. www.bild.org.uk/information/factsheets
Decisions to make, steps to take: A guide to planning long-term care and support for disabled adults and their families, by Sense. Download PDF here.
Good Life, Good Death, Good Grief website. www.goodlifedeathgrief.org.uk
Help the Hospices Commission into the Future of Hospice Care (2013) Future Ambitions for Hospice Care: Our Mission and our Opportunity. The final report of the Commission into the Future of Hospice Care. http://bit.ly/1LW6p8N
Mencap: Factsheet on Bereavement. www.mencap.org.uk
NHS National End of Life Programme (2011) Preferred Priorities For Care. Easy Read. http://bit.ly/15VHRD4
PAMIS (2014) Bereavement and Loss. Supporting bereaved people with profound and multiple learning disabilities and their parents. Learning resource pack. http://bit.ly/VCt0PM
Respond offer a specialist counselling service to people with learning disabilities at www.respond.org.uk/ – helpline 0808 8080700
The End of Life Care Programme was launched by the Department of Health in 2003. The programme has produced a range of useful resources which can be viewed at:
The Route to Success: in the end of life care –achieving quality for people with learning disabilities. (2011) End of Life Care Programme
End of Life Care: Learning Resource Pack: Information and Resources for Housing, Care and Support Staff in Extra Care Housing. (2009) Housing 21 and End of Life Care Programme
Gibson, L and Matthews, D End of Life Care: A Resource Pack for Those Caring for or Supporting People with a Learning Disability at the End of Life. NHS North East, End of Life Care Programme
Palliative Care for People with Learning Disabilities
Read, S Morris, H (2008) Living and Dying with Dignity: Best Practice Guide To End of Life Care For People With A Learning Disability. Mencap and Keele University
Skills for Care. End of life care. http://bit.ly/VkZnT0
St Georges Medical school website on learning disability (intellectual disability) www.intellectualdisability.info/ includes:
Hollins, S and Sireling, L (1989) When Dad Died. London: St George’s Mental Health Library
Hollins, S and Sireling, L (1989) When Mum Died. London: St George’s Mental Health Library
Hollins, S, Dowling, S and Blackman, N (2003) When Somebody Dies. London: St George’s Mental Health Library
Supporting Persons with Intellectual Disability and Advanced Dementia. Fusing the horizons of intellectual disability, palliative and person-centred dementia care. School of Nursing and Midwifery, Trinity College, Dublin
We are Living Well but Dying Matters (2008) DVD for people with learning disabilities. Change. NHS End of Life Care Programme. The National Council for Palliative Care
Webb-Walker, Y (2014) Sometimes Someone We Know Dies: A picture book on loss and grief. For use in a Christian setting. CreateSpace Independent Publishing
What to do when someone dies, free and impartial advice from the Money Advice Service : www.moneyadviceservice.org.uk/en/articles/what-to-do-when-someone-dies
World-First Online Resource to Support People with Intellectual Disability Understand End-Of-Life - Talking End of Life…with people with intellectual disability (TEL). Download PDF here
Dealing with Death and Grief resources from Rosenfeld
https://www.rosenfeldinjurylawyers.com/nursing-home-resources-dealing-with-death-and-grief.htmlReal life stories
The people living at Fairfield Avenue were ageing and one of the nursing staff, Rosemary, undertook a Level 3 qualification in Palliative Care via e-learning as part of her professional development. Through connections with a local Hospice that developed as a result of support being needed for one person living at the home, the team were asked if they would be interested in piloting a Training Pack (East of England NHS Palliative and End of Life Care) – again e-learning with a 4 hour workshop at the end. The team ran with this and were very enthusiastic – Rosemary took a lead and working very closely with the Palliative Care Team put together a very comprehensive, person centred End of Life Care Plan for one lady who was by now requiring palliative care. Rosemary also mentored 2 senior support staff to step up and provide leadership for the teams in this area.
The whole process was felt to be very beneficial and the End of Life Planning was rolled out to everyone at the service. Sadly the service experienced 3 bereavements last year – only one was expected but it put their skills and learning to the test and the End of Life planning proved invaluable.
The service has since experienced quite a shift as new people moving in have been much younger and with far more complex health needs – however, both the nursing and support staff have risen to the challenge and learnt or refreshed the skills they need, continued their fantastic work with the hospice staff and been able to adapt.
The service has been nominated for an award in recognition of this by someone from the Hospice and also one of the senior care workers, Deirdre, was invited to address the Dying Matters Conference to speak about the way the team have been supporting people with a learning disability who need palliative care.
Sadly a wonderful young man who moved in earlier this year died this morning at the hospice with his family, having gone over there from Fairfield Avenue yesterday, but everyone agrees that his final months were as good as they could possibly have been because he had the opportunity to move into this house which meant he did not need to be in and out of hospital so much.
New people being referred have different medical and health challenges but the team are confident now and willing to learn whatever skills they need.
This service has undergone a huge transformation and is now very different, however the staff team working there has not changed significantly in terms of membership but their outlook and approach has. This has been a direct result of the leadership at local and area level, the way they have responded to the training and support provided externally and seeing how it married up absolutely with MacIntyre’s own values training and Great Interactions work. Of course seeing the positive effect that their work has on people and families, even under such difficult circumstances as yesterday/today serves to reinforce to the team that this way of working is best practice.
Our thanks to Macintyre for this real life case study, names have been changed to respect people’s privacy.