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Living and dying with dementia in England: barriers to care
- Authors:
- MARIE CURIE CANCER CARE, ALZHEIMER'S SOCIETY
- Publishers:
- Marie Curie Cancer Care, Alzheimer's Society
- Publication year:
- 2014
- Pagination:
- 24
- Place of publication:
- London
This report assesses access to appropriate high quality care in the final stage of dementia – a progressive, terminal illness. It highlights that dementia is often not recognised as a terminal diagnosis, and this can lead to poor access to care, inconsistent quality of care and inadequate pain management. The report draws on research from across the UK and particularly from University College London, as well as findings from health and social care services. The paper examines the three main barriers that prevent many people from accessing appropriate high-quality care at the end of their lives. These are: poor identification and planning, including poor recognition of dementia as a terminal illness and a cause of death and lack of appropriate/timely diagnosis and care planning; inequality of access to palliative care, hospice care and funding and discrimination; and inconsistency in care standards and inappropriate hospital admissions. The report aims to bring together NHS organisations, social care bodies, royal colleges, charities, researchers, and people with experience of dementia and end of life care, to explore how to address the barriers and develop an action plan that each organisation can to sign up to. (Edited publisher abstract)