Dementia patients do not get proper care, charities disclose

In a report issued today, leading healthcare charities have disclosed that dementia patients are being failed at the end of their lives.

The report, Living and Dying with Dementia in England, published today by the Marie Curie charity and the Alzheimer’s Society, revealed that the fact dementia is not often recognised as a terminal illness has lead to lack of proper care of its patients.

The report identified many failings, including inadequate patient pain management and an overall lack of quality care. It also found that many patients die in an undignified hospital ward when they want to be at home with loved ones.

Last year the UK government made dementia a national priority, with the aim of finding a cure by 2050. Today’s report warned that, despite efforts made to improve detection and treatment, too little attention is being paid to sufferers and their families at the end of their lives.

Around 850,000 Britons are known to have dementia, and the number is expected to rise to two million by 2050. As the population ages, it is estimated that one in three people will die suffering from dementia.

Chief executive at the Alzheimer’s Society Jeremy Hughes 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.”

The report encourages healthcare providers to achieve a seamless person-centred end-of-life care for people with dementia, regardless of where they live, other conditions they might have and who cares for them. It stresses that the illness should be recognised as a terminal condition and that those suffering from dementia will have very different needs and experiences from people with other terminal conditions.

Both Marie Curie and the Alzheimer’s Society are committed to working with a range of partner organisations to raise awareness and understanding of key aspects of dementia in order to improve end-of-life care.

Over the coming months, the two charities plan to bring together representatives from the NHS, a range of royal colleges, charities, social care providers and hospice and palliative care experts to identify practical steps to improve terminal care. This group will report on its progress in December 2015.

Chris Gilroy