Variant Creutzfeldt-Jakob disease: need for mental health and palliative care team collaboration

Abstract

People with a dementia syndrome and a superimposed terminal illness are increasingly being referred to palliative care services. Creutzfeldt-Jakob disease (CJD) is a dementia syndrome in the early stages of which people experience a variety of psychological symptoms that may lead to them being admitted to psychiatric services. People with CJD have died in psychiatric units. There is clearly a need for collaboration between mental health and palliative care services in providing care for people with CJD and other dementia syndromes. An inductive qualitative study of one case of variant CJD (vCJD) was carried out to explore issues that were raised in providing care for a young person with the disease who had died in a hospice unit. The study, which was a pilot for a larger study, highlights some of the complexities of providing care for people with an end-stage dementia and identifies the need for the development of education initiatives to increase knowledge and understanding of the end-of-life needs of people with CJD and other dementia syndromes, and their families.

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