Sandy Sweet has seen first-hand how the system of paying for care fails people with dementia.
‘There have been heads in the sand from successive governments about adult social care,’ says Sandy Sweet, an Alzheimer’s Society campaigner whose mother has dementia.
‘The mindset has been, “It’s too difficult to deal with so we’ll just ignore it until people get really cross, then someone else will deal with it.”’
Sandy is drawing on her family’s experiences to demand that those in power take action to end the injustice faced by them and many others.
Sandy’s mother Maureen, now 87, worked as a secretary, while her father was a plumbing and heating engineer.
‘They were the average middle-class family working their way through a troubled period of power cuts and huge inflation,’ says Sandy. ‘My parents were very hardworking – Dad built up a business from nothing to keep the family.’
Maureen was a very artistic woman with a passion for flower arranging.
‘She was also a superb cook who loved to entertain,’ says Sandy, a retired chartered accountant.
Sandy’s parents were living in a small village in the Yorkshire Dales when Maureen was diagnosed with dementia, believed to be Alzheimer’s, over 12 years ago.
‘My parents were great as grandparents. They would drive 250 miles down the M1 at short notice to spend the weekend with their grandchildren,’ says Sandy, who lives in Wokingham, Berkshire.
‘Mum developed a lot of issues with people who she didn’t recognise being in the house, so Dad had to limit who came in,’ says Sandy.
‘They knew many of our friends, but once Mum stopped recognising some of them, that’s when I became aware of the deterioration in her condition.’
Sandy says that Maureen’s dementia progressed in a way that led to her becoming very isolated.
‘Mum developed a lot of issues with people who she didn’t recognise being in the house, so Dad had to limit who came in.’
Sandy and her brother supported their parents while juggling their own family and working lives at the other end of the country.
‘For Dad it was “in sickness and in health”. He wanted to care for Mum and nothing was going to stop him carrying on,’ says Sandy.
Everything changed suddenly when Sandy’s father had a heart attack.
‘That was our crisis point,’ says Sandy. ‘The GP said, “If you want your father to have a longer life, you need to make a different caring arrangement for your Mum.”’
Sandy’s father sold his home and moved to a bungalow closer to Sandy and her brother, while a suitable care home was found for Maureen nearby.
‘Yorkshire was their life – they loved it there, but we had no alternative,’ says Sandy.
Maureen moved into a care home in 2009, with costs shared by her family and social services.
A few years ago, Maureen’s condition deteriorated further. They applied for NHS continuing healthcare funding, where people with long-term complex health needs have care costs paid for by the NHS. However, their application was rejected.
Sandy feels they were turned down primarily because, although her Mum needs help with all her personal care and her mobility is very limited, ‘She is a gentle person, and so at the time the “aggression” box couldn’t be ticked.
‘Good quality dementia care is expensive,’ says Sandy, ‘and people living with the condition who need care pay significantly more than people who do not have dementia. This seems to me to be an illness penalty.’
‘If you have cancer you might expect some assistance from the NHS, but it seems that dementia is the wrong sort of illness!’ says Sandy.
Sandy says that underfunding of the NHS means the full cost of care falls to families or social services, even care related to dementia as a health condition.
‘If you have cancer or some other life-limiting illness you might expect some assistance from the NHS, but it seems that dementia is the wrong sort of illness!
‘Part of the problem,’ says Sandy, ‘is that health and social care budgets are separate. If there was one pot for both, people might receive more joined up and equitable funding.
‘It is unfair to expect social services to bear the full cost of dementia care when they are already severely underfunded and struggling to meet the demands of many difficult social care needs.’
End the injustice
Call on the government to Fix Dementia Care
Alzheimer’s Society is calling for the specific needs of people with dementia to be addressed in the government’s social care reforms, which are due to be announced in the Queen’s Speech in October.
‘The government has got to start governing, then we can have a proper open debate about the costs of dementia,’ says Sandy.
Although Maureen receives good dementia care, elsewhere the quality of care can be a major issue, as is the difficulty of navigating the social care system. Sandy has attended party conferences as part of our Fix Dementia Care campaign.
‘Trying to fight my way through and find what we were entitled to was such a learning curve,’ says Sandy.
‘The system is inordinately complex,’ says Sandy. ‘Trying to fight my way through and find what was out there and what we were entitled to was such a learning curve. For a lot of people it’s overwhelming and if you’re older it’s all too difficult.’
Sandy sees great value in Alzheimer’s Society’s new Dementia Connect service, which offers people affected by dementia a single point of referral.
‘I think that sort of navigator role is incredibly important,’ she says. ‘People who get a dementia diagnosis should be signposted to a person who can help.’
No less a person
Sandy has appeared on conference panels, given talks at events and supported efforts to make Wokingham more dementia friendly.
‘I feel passionately that people with dementia are not getting a fair deal in terms of money or government mindset. They are right at the very bottom of the pile,’ she says.
‘My mum is no less of a person than she was 20 years ago but now has no voice. She can’t vote, so she’s effectively disenfranchised.’
‘We mustn’t give up on people with dementia,’ says Sandy.
Sandy credits Alzheimer’s Society with raising the profile of people with dementia and carers, though there is still much to be done.
‘The mark of a country is how we respect and care for our sick and vulnerable. We mustn’t give up on people with dementia,’ she says.
‘It’s our job to care for them to the best of our ability – the government can’t walk away from it.’