Dementia Support Line
Fight for a fair deal: End the injustice
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.
Hardworking family
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.’
Crisis point
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.
Sandy's mother was rejected for NHS continuing healthcare funding.
Turned down
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
Complex system
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.’
Sandy feels the social care system is far too complex.
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.’
Jacqueline Steer
saysMy husband was diagnosed a year ago with Alzheimer’s, I have just read the statements regarding the lack of NHS care and funding, and I am terrified about the future. So far I’ve been bombarded with leaflets, and quite frankly I’m so busy looking after him I haven’t got the time to read them. I am struggling on my own, with other life illnesses there seems to be so much support and help, but with dementia you have to source, and pay ,for everything yourself. My husband is a good man, has worked from the age of 15, until retirement at 69, always payed his taxes and NHS contribution, I don’t understand why this life debilitating condition is not recognised.
Kay Hart
saysVery concerned about the lack of advice to families when a relative has to go into care with dementia. We have had no help, just a demand so far for over £20,000 which none of us can pay. Trouble seems to be because the resident, my mother, didn't want anyone else to look after her affairs and still owns her own home. None of her three 'children, ' I'm 70, has any right to access her bank account or sell her home and she no longer has mental capacity BUT does not qualify for an assessment for NHS Continuing Care, according to the professionals, as she is no trouble to care for, though she can't even stand and is doubly incontinent!
Penny Payne
saysMy mother suffered from vascular dementia for several years. She died in Dec 2005. Following her diagnosis the consultant suggested buying medication, available on the Internet ( nothing was available on prescription). She required 24/7 supervision. I had a young family, and against my instinct Mum went to a care home. All was fine until the management changed; mum was left sitting in her urine, clothes soaked, she was dressed in other residents' clothes. The housekeeping was dreadful. Mum fell out of bed, broke her hip and waited 7 hours for an ambulance. Against everyones advice I moved mum to a smaller home where she had to shared a room but the staff were brilliant and cared for her properly.
Mum was doubly incontinent, immobile, could not feed or do anything herself yet she too was denied continuing care.
I lobbied our MP following mum's diagnosis and he flippantly suggested that I 'take her on a world cruise'!
Alas, it appears little has changed with regard to funding in the last 14 years...!
Patrick Hawkins
saysMy wife was diagnosed with dementia in Alzheimer's in 2012.Since that time we have self-funded care.Fortunately,I have a contact who is a Trustee at a Nursing Home with a Dementia Unit.From that contact we
sourced an experienced ,fully trained,small teak of Carers who have been brilliant.It is still very costly.The only financial assistance is the
Attendance Allowance which equates to £87.50 per week-barely 4.5 hours care! I applied for Continuing Healthcare Funding two years ago and whilst my wife has reached precisely the same stage as Peter's wife the Assessment Panel has been not eligible!Appealed up to Independent Review Panel who have decided to uphold the two person multi disciplinary teams Decision Support Tool scores!When asking the Clinical Commissioning Groups Assessor if she had knowledge and experience of dementia she advised that she did not have to as her role was solely to determine whether or not there was a Primary Health care need i.e.Nature,Intensity, complexity,and unpredicability!! There has been very considerable delays throughout the process.I now await decision following a further Assessment.
The whole Assessment system is designed that very few are successful.Please see change.org/dementiacare ,sign the Petition and share.It is grossly unjust that thousands are forced to self-fund and lose the family home in the process to pay Care costs.Thank you.
A bloor
saysAfter heart by pass and cancer have been a prisoner in my house for three years after a massive operation which left
her. A lot worse. With no help from government
Pat Hartley
saysMy partner has Alzheimer’s/Vascular Dementia and has been suffering withe disease for 10 years now. He is doubly incontinent and has got very aggressive. It was hard work for me and so I had to let him go into care. It is proving very expensive for me as I have only my pension to live on but there is no other alternative. The government in my opinion discriminates between the different types of illness. If they have dementia they get no help. Any other illness they get NHS funding! This is not fair!
Peter Garside
saysI read your story in the magazine & was horrified your Mother was refused funding by NHS. The Queen's Speech yesterday may have something yet to be announced but clearly our country still has a long way to go before faith can be restored in NHS & it is made fit for purpose. Please keep on campaigning until we see some results.
My late Wife Pauline managed to qualify for NHS Continuing Healthcare, but only after an Appeal. Thousands of people have read my website wich is both a Memorial to Pauline but also has detailed advice on how to prepare for an Application to NHS. Not all people are accepted as currently benefits are I believe rationed in order to conserve funds ! Your case has to be "complex" which allows for personal oppinion to come into the decision process. Without preparation the professionals will get away doing whatever they want or are told to do, so you have little chance of getting the help you desperately need & deserve to get. Website details are on
https://continuinghealthcare.wordpress.com/
Best wishes. Peter Garside
Thanks for sharing this, Peter - we hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
For anyone looking for more information, our page ‘Tips on preparing your case for NHS continuing healthcare’ should prove useful (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) - we also have a free downloadable booklet with further information (https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/whe…).
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Alzheimer's Society blog team
Peter Easom
saysA really good post on the pitfalls of helping a person with dementia. My wife was diagnosed with F.T.D. In 2015 and passed away in April this year. I found caring for my wife hard but navigating social care a great strain. My wife was assessed for continuing care but after an assessment lasting nearly three hours was turned down as her case was not complex enough and you did not need any special nursing skills to look after her. I should say by this time she was double incontinent unable to walk, feed herself, or do anything for herself, also she was unable to speak. About two weeks after assessment she was admitted into hospital with an infection. After a short stay in hospital to control the infection she was discharged on palliative care with fast tracked continuing care, nothing had really changed from the last assessment. This must go on all over the country hundreds a time every day, the cost of a social worker from the council plus someone from national health to conduct the assessment for 2.5 to 3 hours a time and all the appeals that follow, the cost must be astronomical . This money could be better spent on properly funded healthcare instead of squabbling over what pot of taxpayers money it comes from. I also feel that the assessment is greatly stacked against people with dementia and really worry that people with dementia who have no one to fight for them must really struggle.
Mrs Eileen Lorraine Gray
saysMy mum was diagnosed with Dementia my brother passed away in May 2016 after having a couple of strokes he lived with my mum my sister was just recovering from her cancer treatment and after her twin died of a couple of strokes she also took a major stroke down one side my sister had wanted for my mum to go live with her before her illness but my brother in law his own health was not good he became my sisters main carer as she needed help 24 hours a day .I have been living in Spain for many years took out residencia in 2007 my own husband passed away on 2012 mum was not able to look after herself and keep her fridge clean or her cupboards my son worksfull time and called everyday to do mums housework and garden she wanted his company every day and it became too much for him so I asked mum if she wanted to come live with me in Spain she said yes as she had already been coming 3 times a year and spending 6 weeks on average each time Mum came to live with me in November 2017 but I had noticed she was becoming quite forgetful and saying she was lost kept accusing me of going and leaving her on her own for hours which was not right I only left her on her own to go walk my little shihtzu for twice a day for 20 mins mum started to try control me wanting things to eat at all sorts of time as she kept forgetting she had already eaten she was refusing to go to bed and once when I helped her it turned really nasty she scratched my chest tried to bite my arm and then she punched me I was at my wits end my grandson came to stay and I went and shared mums room with her so my grandson could have a bed to sleep on she woke up one night and started shouting at me to get out I tried to humor her but she kept shouting at me my grandson heard this and came knocked the bedroom door and said I could sleeo in his bed to which I did but mum was behind me calling me names I l went onto the other room and mum started banging on the door with her fists shouting and saying I put Thomas out of his room where in fact she was the one with all this agression getting me out of the rooms and it was my house It was at this point I knew things were only going to get worse so I and my daughters checked out nursing homes in Spain mum had already been diagnosed by the hospital in Spain as having demencia So I knew it was not going to improve my mum at present is paying for her own care but its only enough to pay for about three and a half years my mum when she was living in Bangor Northern Ireland was receiving an allowance for personal care of about 83pounds a week and I have been told by them she is still entitled to this money that was before she went into care 2 months ago the nursing home is an hours drive away for me and my daughters to visit so its expensive the cost of petrol up and down however my concern is can we claim any costs of mums care and travel
Emma Craven
saysIt was the same for my mum but the aggression was there but normally only directed at myself until very near the end when even a man walking past her room would have her screaming and lashing out, except for the last day when she accepted the vicar to hold her hand and pray with us. Anyhow the box was eventually ticked but it was too late mum died five days later. I am having to pay her care fees off even though my only income is disability. The NHS continuing care needs looking at and changing.