Dementia patients are getting ‘left out in the cold’ when it comes to their end of life care, a Harrogate charity has warned.
Dementia Forward said the lack of conversations surrounding the disease meant patients are at risk of receiving worse end of life care compared to those with cancer.
The charity’s warning comes after a damning CQC report which found care home staff did not always have the training or understanding to care for people with dementia.
Hospices were also criticised by the CQC as they found some refused to even look after dementia patients in their final days. This happened if they were not ‘able to co-operate’, in case they were too difficult to care for.
Jill Quinn, CEO of Dementia Forward said that the report’s findings did not shock her and added conversations over end of life care were needed much earlier.
She said: “The problem is we don’t talk about it enough and we don’t prepare for it. Even with families, there’s so much time to prepare but we don’t. We need to be braver.
“I don’t think we give enough respect for the role of staff in care homes. There needs to be constant training to understand the needs of someone that can’t communicate.
“When someone has cancer they still have their mental capacity which is so important as they can have the discussion with their family and make decisions over their care.
“But when a person has dementia for 12 years, it could be four or five years before they reach end of life when they lose their mental capacity.
“By that time, decisions haven’t been made and there’s a battle between what’s the most humane way to treat them, what would they have wanted and what’s available.”
The CQC’s report highlighted the difficulty in identifying the last 12 months of life for people who have conditions other than cancer, including frailty and dementia.
The report said: “People with dementia need the opportunity to talk about their end of life care wishes and preferences before the last year of life as they will progressively lose the capacity to make decisions.
“However, health professionals do not always recognise dementia as a life limiting condition, and as a result this opportunity may be lost.
“While people with dementia may lack the capacity to make some decisions, they should be supported to communicate and express their wishes and preferences about their care where possible through communication that meets their needs.”
The report found that hospices were far better than hospitals for dealing with death but some were not proactive in meeting the needs of patients who did not have cancer.
While 90 per cent of hospices were rated as good or outstanding for end of life care, 42 per cent of hospitals were inadequate or requiring improvement.
Dementia patients were also at risk of ‘languishing in hospital’ as hospices weren’t always an option.
Tony Collins, chief executive of Saint Michael’s Hospice, explained that the hospice has started to address this problem by forging links with different charities including Dementia Forward.
However, while Mr Collins said the report was a ‘wake up call’ for care providers, limited resources caused by funding constraints restricted providers’ abilities to improve services.
He said: “The problem is if we need to reach more people with better services then we are going to need more resources.
“The hospice currently operates on 20 per cent statutory funding and 80 per cent of funding is being raised, that’s challenging our sustainability in terms of development.
“We are having to rely more and more on the money we get from the community. This means we can’t develop at the pace we want to.”
Despite 80 per cent of the population wanting the option of dying in a hospice, Mr Collins explained that there were still many people dying in care homes and hospitals.
Although the majority of these were ‘excellent’, he said some could benefit from more training but explained these improvements could not happen without increased resources.
He said: “Historically cancer receives very significant public funding and investment and the expertise starts to be centred around this.
“In many hospices you will find that 100 per cent of people who died there were living with a terminal cancer diagnosis.
“It’s taken a lot of work from hospices to try and undo that but I think we are doing well. We work creatively to address this with the partnerships we have created.”