Report identifies barriers for people living with dementia in Wales

A new report released today by Marie Curie and Alzheimer’s Society reveals that people with dementia in Wales face a number of barriers in accessing high-quality care at the end of life.

The number of people affected by dementia in Wales stands at 45,000, with around 95% of those people aged over 65. By 2030, the proportion of the UK aged 85 or over is expected to double. As a result we are likely to see a significant increase in the number of people with dementia – currently the leading cause of death in women and the third leading cause of death in men.

Marie Curie and the Alzheimer’s Society have joined forces to compile the Living and Dying with Dementia in Wales: Barriers to Care report to address the often overlooked final stage of dementia – a progressive, terminal illness. The report 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, as well as findings from health and social care services.

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

The three main barriers that prevent 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

Among those people to experience some of the barriers identified in the Living and Dying with Dementia in Wales report is Katie Beresford, of Cwmbran, whose husband David died of dementia in 2013 at the age of 64.

“It was a 17-year spell with dementia in total,” said Kathleen. “His diagnosis was in 2002, but it meant that he went six and a half years undiagnosed. The lack of diagnosis was horrible. David was relieved when he finally got the diagnosis because we actually had a name to put on it and a reason as to why he was having these blackouts and memory losses. I wonder now how he would have benefited if he had had medication earlier.

“We’d been married for 44 years and it robbed us of the retirement we had planned for. The illness took David’s life away, but it also took my life away, too. I was a professional in my own right, and I’m not going to have the retirement I wanted. I wanted to care for David, he was worthy of that.”

During his time living with dementia, David spent a lot of time with his local Alzheimer’s Society group, and since his death Katie still attends the group.

“I want to help other people now who are going through the process,” added Katie. “I really think my experience is useful to others, and I can see that even some of the staff watch my approach.”

Marie Curie currently runs a programme aimed at improving end of life care for people living with dementia in Pembrokeshire and Carmarthenshire. The scheme sees three Marie Curie Senior Nurses working in partnership with Hywel Dda Health Board to provide thorough assessments of those people living with dementia and providing care and support to them and the people who care for them. However, the charity still acknowledges that more needs to be done to reach people with dementia in Wales.

Simon Jones, Head of Policy and Public Affairs at Marie Curie, Wales, said: “More and more of Wales’ population are set to be affected by dementia in the future, and in order to best address this growing problem we need to act now.

“People with dementia who are at the end of their lives need and deserve tailored care that is specific to their condition and experiences, just like the care provided for people with other terminal illnesses.
 
“We will work with our colleagues at the Welsh Government, health boards and other partners to ensure there is a clear strategy to address the continued rise of dementia as a terminal illness, and break down the barriers preventing people living with dementia from accessing the best quality, end of life care.”

Sue Phelps, Director of Alzheimer’s Society in Wales 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. As a result, many people with dementia are not dying the way they wish. Some are not dying where they had hoped; others are dying in pain or without dignity.

“A lot needs to happen to improve care, increase staff training and awareness to help make the 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. The quality and access to this care is essential to get people the help, support and treatment that they really need.”