Dementia Support Line
The new BBC TV show that wants to start a national conversation about dementia care
This coming Sunday, 9 December, BBC One is airing a new one-part drama, Care, written by Jimmy McGovern. Care follows the story of Jenny (played by Sheridan Smith) who battles against the care system when her mum, Mary (Alison Steadman) develops dementia after a stroke.
Sheridan Smith and Alison Steadman in 'Care'
Alzheimer’s Society hasn’t been involved in the making of this drama, but we will certainly be watching with interest.
In recent years we’ve seen characters in soaps like Emmerdale and EastEnders develop dementia and watched how their lives change with the onset of symptoms, but rarely is the issue of accessing social care support explored on such a prime-time TV slot.
Through our Fix Dementia Care campaign, which is fighting for reform of social care, and our national dementia helpline not a week goes by without us hearing from people struggling to access vital support or facing catastrophic costs for care.
Decades of underfunding by Government has resulted in a broken system where unpaid carers – typically daughters, sons, partners and friends – are left to pick up the strain.
We have evidenced the power of portrayal of dementia in the production of our media and broadcast guide so it’s really heartening to see these issues hitting the mainstream with Care - and we hope it will make politicians sit up and listen.
Ahead of Sunday, we caught up with Jimmy McGovern to find out what drove him to write about dementia care.
Real-life inspiration behind Care
'I don’t see myself as a political writer, I just put people on screen with ordinary, everyday problems' says McGovern when asked about his motivations.
It was meeting Gillian Juckes, his co-writer, and hearing her own personal experience of getting care for her mother with dementia that captured his attention:
'It was all the hoops she had to go through and the toll that puts on a person.'
McGovern discloses that he recently lost a brother to dementia, which came on rapidly after a stroke – with this occurring while he was in the process of making Care. While not the inspiration, it provides a poignant reference point.
When discussing the plot of Care, McGovern hones in on the tension between care and treatment that became starkly apparent: 'Treatment is something that can get you better, but care is just care – it’s looking after someone [despite their prognosis]. It’s there that the system breaks down.'
Underfunded 'impossible' care system
'It used to be that you went into hospital when you were unwell and left when you were better. Not anymore. You’ve got all these people stuck in hospital because they need care but can’t get it and there just isn’t enough money in the system to go round.'
Sheridan Smith plays Jenny, the daughter of a mother who develops dementia after a stroke, in the BBC drama Care
It is this point that the failure lies with the system and national Government, and not those who work in it, that McGovern is keen to convey. He says he was 'determined there should be no villain in Care' and rather wanted to show that it’s 'dedicated people with integrity trying to work in an impossible system.'
He praises actor Sheridan Smith for playing the role of Jenny with such humanity:
'Caring costs her her job, her personal life and this is a reality for many families affected by dementia.'
We need to fix dementia care
McGovern would like to see more people with dementia accessing NHS Continuing Healthcare - a package of care arranged and funded solely by the NHS, remarking
'it’s ridiculous that you should count yourself lucky if you have another serious medical condition on top of your dementia as it makes you more likely to qualify for this funding.'
He finishes by saying that 'if British politics ever gets back to normal there needs to be a national conversation about care for older people. It’s a question that has to be addressed.'
Care is on BBC One on Sunday 9 December, 9pm.
Fix Dementia Care
Our Fix Dementia Care campaign is calling for reform of social care, which has been starved of funding by Government for years and is failing people with dementia. Unite with us to make change happen.
Sheila Richardson
saysI thought this programme was acurrately portrayed last night. It was hard to watch as i am a carer for ny elderly 93 old father has dementia. Well done. Let's rally for more awareness & research to help people understand this horrible disease.
Gemma Livesey
saysI've got to be honest, I thought this programme was an hour and a half of not much. I've cared for two people with dementia at home, and then moved them into nursing homes, plus removed one and took her home again as the home was so awful. There was no hospital bed in the nursing home, they mentioned the court of protection, bit didn't show how hard this is to obtain. They showed the lady become aggressive, but didn't try to explain why. They didn't show the struggle of getting her in and out of the car, helping her wash, eat or go to the toilet. It wasn't a true representation of what it's like and how hard it is.
Louise M
saysSo sorry to hear about your extremely difficult experience. You are spot on there with your comment on Power of Attorney. It really needs to be in place while the person still has capacity and we should all be thinking of making one at some stage. So it’s a shame the message was left out.
Jane Ward
saysI also watched 'Care' and found it to be harrowing and difficult. I looked after my Mum who had Vascular Dementia full time at home for the last four years of her life. I was 'lucky' - I am single, no kids of my own and we could afford for me to give up work and concentrate on caring for Mum - we had a lot of good days, and a few completely horrific ones - but I can't conceive of how it would be to have to cope with everything the character Jenny had thrown at her. I now work for a charity trying to improve things for people with dementia and their carers and I volunteer for the Alzheimer's Society Research Network, so I have met far too many people faced with very similar issues in real life. We need to support all of these people, better care needs to be provided, but I will also say that we must not blame the thousands of incredible professional carers in our care homes who like the carer Jenny met aren't paid anywhere a true wage for the work they do, who are not given the level of training and support they need for these incredibly difficult roles. Caring for people with dementia in a care home is difficult, we need to seriously look at the way we staff our homes if we are to improve the level of care. We need to make it a profession people are proud to chose. Better care in homes will almost certainly save on costs of hospital admissions etc. We also need to get better at taking a helicopter view of care......so much funding is siloed so that each area of care is only taking a view of it's own funding stream rather than of the whole picture.
stella Balsamo
saysWhere is the national debate? BBC Care has started raising some of the issues but flawed with many inaccuracies and an over optimistic dramatic vignette on CHC. The reality is that health professionals have entrenched and ageist views and are obstructive. CHC would never have been awarded as presented in the drama. The reality is that the threshold is impossibly high and based on subjective interpretation by unskilled CHC nurse assessors. If you are awarded funding, that is only the beginning of the saga; they review and do all they can to wear you down so that they re assess, re review and remove financial support. Oh and if you are awarded fast track CHC they remove it if you are still alive after 12 weeks! The system is appalling. Somebody please tell it like it is.
Carole Lee
saysIt was like watching EVERYTHING that I went through in EXACTLY the same way -- what makes me so sick is that my experience with my mother's dementia was 18 yrs ago.
Nothing has changed. Nothing. How dare we pretend via soap operas and TV adverts etc that we understand dementia and its anguishes. Please let's stop pretending.
How we care for those with dementia and their families is a total disgrace. Well done J McGovern - an excellent job - but why oh why are we all SO shocked at the brutal simplistic truth.
Did we not know this was going on !!??
Anne Bohin
saysJust watched Care and it took me back 20 years to when my mother had a severe stroke. Continuing Care was never mentioned by the NHS! I only found out about this after mum died through an article in the Daily Mail. We too were refused, went into a similar conference room - again refused - ended up going to the Ombudsman who ruled in our favour. I CANNOT believe nothing has changed with regard to NHS Continuing Care in all those years. Feeling so angry. This brought it all back.
Debra knight
saysI did enjoy this programme but I feel it needed a bit more in-depth knowledge shown, I have looked after dementia residents, and your programme portrayed it well, I hope more can be done in the future as this world needs to be made more aware of this illness, it's a horrible disease takes all your dignity away, changes life's, and families, ice seen so many lives ruined by this disease, and so many different types of dementia, it's about time we are made aware , well done BBC, hope to see more in the future, I think a programme about autism would be a great one to do, that needs to be shown ,
Jane Moore
saysThis film brought back all the bad memories of 12&1/2 years ago and gave me a nightmare where I was again choosing a care home for my mum. My mother passed away in 2016. The anguish and guilt hit me once again from a nightmare I couldn't wake up from. Horrendous and harrowing to watch if you have been through it but an excellent portrayal of how it goes. (I would only add one thing and that was the sisters were not accused of defrauding the government as I was when at my weakest point during an assessment for care which only came to light when I tried to pay private fees. In the event mum lived so long in care that at the end of the day my so called "defrauding" saved the council money despite my not asking for continuing care which she should have been entitled to). Councils need to look carefully at how assessments are made. Little has changed today.
Anne Gee
saysI understand dementia and the devistation of the impact this terrible disease can have. My husband tears his clothes up and sometimes the bedlinen, throwing everything out of the bedroom window. He is in a home, which is the only one in Wolverhampton for his type of behaviour. I speak to the other residents who all have their own class of dementia, you have to watch and get to understand them. My husband has damaged furniture. I visit my husband, but there are so many that do not have a visitor, you do not have to stay long, but just go show a face so they hopefully do not forget who you are, everyone who has a family member or even a dear friend should visit to try and make their lives a little happier, take time in connecting to other people in the same situation that means a lot to them.
Anne
saysThe program was excellent
Covered how hard to get Nhs continuing care funding
Especially as have paid into the system all there life
But it costs more than £700 a week for 24 hour care
More like £2000 a week
Think should have research this aspect as well
D Ling
saysI agree, the programme highlighted just how much this government are prioritising costs above care. The problem is that now care homes are going to find it even harder to find staff to care for our sick and elderly, with the government putting a salary of £30,000 before immigrants that work in care homes and rely on to do a highly stressful job that most people wouldn't want to do.
Staffing levels in social care will only get worse with more care homes closing. The average wage of a nursing carer was £7.66ph, which means a nurse in a care home would have to work over eleven hours a day, seven days a week to earn the £30,000 to get a visa.
Julie Mealey
saysBeen trying to get CHC for my mum and just getting no where. Was sectioned early this year and now in permanent care. Has heat failure and AF but will continue fighting for it . Although the program was good it does reflect those affected by mixed dementia and the years of trying to get a diagnosis, the upset and how it affects all the family. Could have portrayed it a bit better I felt x
Ann morris
saysAnd so it should , not everyone has private insurance, and gone are the days of big families to share the help , Teresa May get a grip , on the ordinary man on the street suffering this heartbreaking disease needs help , Now
Julia B
saysDad had Parkinson’s and Dementia.
He had been in Carehomes for 5 years.
Those 5 years we learnt a tremendous amount.
How the main concern is funding !!! Arguing over continuing health care was the biggest challenge that and assessing care given.
More awareness required for new families experiencing all this.
May Douglas
saysMy dad had dementia and I lost him to the illness. It broke my heart seeing a piece of him disappear each day.
Rebecca Ginley
saysThe programme displayed exactly how we were treated. All about discharge figures and money. The current care system is so flawed and needs to be addressed. I hope now an excellent programme highlighting what thousands are people are experiencing, we can move forward and people can get the care they deserve and need.