New report reveals the barriers preventing people with dementia from accessing quality end of life care

Marie Curie launches new report in partnership with Alzheimer’s Society

A new report from Marie Curie in partnership with Alzheimer’s Society details the barriers preventing people living with dementia from accessing high-quality care at the end of life in Northern Ireland.

According to the latest figures from Alzheimer’s Society there are approximately 20,000 people living with dementia in Northern Ireland and more than 850,000 across the UK.  As the population lives longer it is anticipated that the disease it likely to affect more people.

Projections suggest that over the next 40 years, as society ages, that dementia will become more common in Northern Ireland, with around 60,000 people predicted to be living with dementia by 2051.

Marie Curie’s report entitled ‘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.  This means that people with dementia are not being appropriately identified for end of life care, have less access to care and receive poorer quality care than people with other terminal illnesses.

Marie Curie, together with Alzheimer’s Society, is aiming to bring together Health and Social Care organisations, social care bodies, royal colleges, charities, researchers, and people with experience of dementia and end of life care, to explore ways in which to address these barriers and to 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

Identification and Planning
- Poor recognition of dementia as a terminal illness and a cause of death

Inequality of Access
- Poor access to palliative care, hospice care and funding

Commenting on the report, Joan McEwan, Head of Policy and Public Affairs, Marie Curie said:  “End of life care for people with dementia remains a hidden aspect of health and social care in Northern Ireland 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.

“We know 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.”

Bernadine McCrory, Operations Director, Alzheimer’s Society NI added: “In Northern Ireland it is estimated that there are nearly 20,000 people living with dementia, and about 7000 of these don’t have a diagnosis. It is so important that people receive a timely diagnosis and that dementia is identified as a terminal condition, allowing people to access the appropriate care and plan for the future while they have capacity to do so.

“Health and social care teams need to have a clear plan from diagnosis onwards, so conversations about an end of life plan can happen while the person has capacity to make informed decisions. We must start removing barriers to good end of life care for people with dementia - we must challenge stigma and funding practices that prevent pe