The wait for dementia care is on the rise thanks to extortionate nursing home prices and a complicated social care system says a Wokingham-based expert.
Local campaigner Sandy Sweet appeared on a panel of professionals to discuss the need for improvement to the nation’s current dementia care provisions on Tuesday.
Mrs Sweet highlights that many people either know of someone with the illness or have it themselves, but when it comes to seeking help for the terminal condition, the country’s health care system has little to offer.
The volunteer ambassador for The Alzheimer’s Society said: “The illness itself isn’t the only thing sufferers of dementia and their families face.
“The wait for a home is a lengthy process itself, not to mention the unbelievable cost of care which is around £1,300 per week.
“Patients with dementia are charged a shocking 25% more than other care home residents. I think it’s absurd that individuals suffering from an illness are forced to scrape together funds which the NHS should be paying for. If it was any other terminal illness, this wouldn’t be the case.”
Mrs Sweet has volunteered and campaigned for Alzheimer’s Society for eight years. She joined on retirement and has a personal connection to the cause following her mother’s 15- year struggle with the illness.
She said: “Dementia is an illness which many people have a personal connection with.
“There are lots of people living in Wokingham with the disease and I think some people don’t realise how emotionally, physically and financially difficult it is to cope with.”
The Alzheimer’s Society is the UK’s only charity which campaigns for change and finding a cure for dementia. It runs a professional advice service called Dementia Connect – which is staffed by specially trained volunteers who provide sufferers and their families one-to-one support – and runs a number of campaigns designed to increase awareness of the medical condition.
The organisation also operates a unique research system which sees a panel of volunteers work closely with scientists to decipher which investigative projects would most benefit those living with the disease.
Mrs Sweet said: “Alzheimer’s Society is a very unique charity.
“There are a huge number of volunteers that go out of their way every day to strengthen the battle against dementia and the charity truly puts these individuals at the heart of their work.
“The charity do what they do because they know how difficult living with the condition is.
“The truth is, if the right dementia support was available in Britain, the charity wouldn’t have to exist.
“It really is time for the government to step up and do something about the issue, starting with the joining of health, social care and public health to establish a joint budget.”
“By 2021 there will be one million people living with dementia in the UK. That’s the equivalent of the population of Birmingham.”
And Mrs Sweet hasn’t kept her views private. At last year’s Conservative party conference in Birmingham she spoke to Theresa May about existing dementia care in both Wokingham and on a national scale.
The volunteer said The Prime Minister “agreed herself that the current system is too complicated and overly difficult to navigate around. Dr Phillip Lee was also at the event and commented on how shocked he was at the cost of high quality dementia care.”
She added: “Wokingham has been a dementia-friendly town for five years now.
“I was part of the scheme that encouraged local companies to give that extra bit of time to citizens coping with dementia.
“To qualify as a dementia-friendly business staff simply had to participate in a 30-minute course which taught them the basics of accommodating for customers with the illness.
“It included things such as helping them with their change and reminding them if they’d paid for their items or not.
“Waitrose and Lloyds have been exceptionally supportive of the cause.”
And Mrs Sweet presented her campaign to a much larger audience on Tuesday while sitting on the panel of the Alzheimer’s Society Annual Conference.
The event – comprised question and answer sessions with experts from the industry – featured responses from Minister of State for Care Caroline Dinenage and National Medical Director for NHS England Professor Steve Powis. They commented on topics including the current care system, dementia training, and research which were presented to them in the form of pre-prepared questions from the public.
Speaking prior to the event, Mrs Sweet said: “This is the first time I’ve ever been asked to sit on the panel. It will be an interesting event as the green paper for the social care bill has been pushed back several times.”
“One of the key points I’ll be stressing is that social care needs to be made much for accessible to dementia patients. Nowadays, unless you have kids and access to a computer to search for nearby support, there’s no hope.”
“The council’s motivation to provide accessible dementia care in Wokingham is disheartening.
“In most cases, it’s not until an incident happens, such as an elderly person having a fall, that people admit there’s a need for help. I am not blaming the council for the situation, as sufficient funds just haven’t been prioritised for the cause, but in a town where dementia sufferers are being denied care when at their most vulnerable, it’s clear that something needs to be done.
“It’s frightening that in our own borough there are people living with dementia that don’t know where to turn for help.”
For more information about Alzheimer’s Society and what they do log on to www.alzheimers.org.uk