'Huge worries' over end-of-life dementia care

Figures show that only 6% of dementia sufferers die at home, and a leading charity has urged that end-of-life care should be more effectively pre-planned to ensure their wishes are fulfilled.

The Alzheimer's Society claims that only a small proportion of dementia sufferers died at home in 2010, compared to roughly two thirds who claimed they actually wanted to.

This compares to 21% of the general public, according to research carried out by the charity.

Newly-appointed Health Secretary, Jeremy Hunt, made an announcement this week on dementia-friendly environments, at a conference in Eastbourne, but an Alzheimer's Society spokesman claims society had an 'unwillingness' to discuss death in society.

Jeremy Hughes, Chief Executive of the Alzheimer's Society, claimed that it was 'hugely worrying' that so many people with dementia are not ending their lives in the manner they wished or deserved to.

He also re-iterated that with dementia being the third leading underlying cause of death in women and the seventh in men, the matter should not be ignored and merits careful planning.

People living with dementia have equal right to die with dignity

Mr Hughes also called for staff dealing with dementia sufferers nearing the end of their lives to receive specific training, in order to provide the best care possible, even when communication levels are diminished. This is particularly important as sufferers have an 'equal right' to die with dignity, without pain and in the place of their choosing.

Through interviews conducted by the charity, it appears that many sufferers are not being treated with dignity at the end of their lives.

As many as 25 former carers were spoken to - along with 10 current carers and family members of dementia sufferers - and comments received confirm that 'numerous' people saw loved ones going unchanged, and left sitting in their own faeces and urine for some time.

One interviewee claimed his father had a dislocated shoulder for 11 days prior to his death, despite notification to doctors by the family.

Call for better training and planning

The Clinical Vice-President of the Royal College of Physicians (RCP), Dr Linda Patterson, also supported the call for better training and planning.

She claimed that people with dementia are dying in care homes and hospitals against their wishes, and it is important for doctors and other members of the healthcare team to be trained to treat the patients with dignity.

Full communication with carers and relatives to support decision-making on end-of-life issues, was also claimed to be critical by the RCP.

Copyright Press Association 2012