New report reveals the barriers that prevent many people with dementia accessing high quality end of life care

A new report from Marie Curie and Alzheimer’s Society today reveals the barriers that prevent people with dementia from accessing high-quality care at the end of life in England

The number of people affected by dementia in the UK will be 850,000 by 2015. By 2030, the proportion of the UK aged over 85 is expected to double. As a result we are likely to see a significant increase in the number of people with dementia, which is currently the leading cause of death in women and the third leading cause of death in men.
 
Living and Dying with Dementia – Barriers to Care addresses the often overlooked final stage of dementia – a progressive, terminal illness. It highlights that dementia is often not recognised as a terminal diagnosis, which 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 (UCL), as well as findings from health and social care services.

Following its publication, Marie Curie and Alzheimer’s Society is aiming to bring together NHS organisations, social care bodies, royal colleges, charities, researchers, and people with experience of dementia and end of life care, to plot out how to address the barriers and develop an action plan that each organisation can to sign up to.

The three main barriers that prevent many people from accessing appropriate high-quality care at the end of their lives include:

• Inadequate Quality of Care
  - Inconsistency in care standards and inappropriate hospital admissions
  - Poor pain management
• Identification and Planning
  - Poor recognition of dementia as a terminal illness and a cause of death
  - Lack of appropriate/timely diagnosis and care planning
• Inequality of Access
  - Poor access to palliative care, hospice care and funding
  - Discrimination

Phil McCarvill, Head of Policy and Public Affairs, at Marie Curie said:

“End of life care for people with dementia remains a hidden aspect of health and social care in England so it is vital that we shine a light on the final stages of dementia to improve care and support for people and their families.

“I know from the personal experience of caring for my father that people with dementia have very specific needs. All too often, services do not respond to the needs of the individual.  That is why are calling on a number of organisations to work with Marie Curie and Alzheimer’s Society to improve care and support for people with dementia at the end of life.” 
 
Jeremy Hughes, Chief Executive at Alzheimer’s Society said:

“Dementia is frequently overlooked as being a terminal illness and as a consequence, there are unacceptable failures to prepare and plan for end of life care. Despite much attention on dementia in recent years, many people with dementia are not dying where they had hoped; others face meeting the end of their life in pain or without dignity.

“A lot needs to happen to improve care. Improving staff training and awareness is vital in order to help make people’s final days as good as they can be. Mapping this journey is difficult but considerations for end of life care for people with dementia are essential to meet the needs and dignity of each individual and their loved ones.”

View our website to read the full report and the executive summary

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