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, a new BBC drama about dementia by Jimmy McGovern

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. 

Our helpline advisers are here for you.

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 in the BBC drama Care

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.

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39 comments

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My mum had a stroke 12 months ago and had to go into a nursing home. The last few months i have watched the Dementia take her over. The girls do a fabulous job caring for mum but in between major renovations to the nursing home. Which are not helping mums Dementia at all and the shortage of staff she is often left in bed too sleep. Lack of stimulation due to lack of volunteers doesnt help either.

how dare they take away the resources through lack of funds,,I worked in a dcc home that supplied residential, reablement, dementia, and people who wanted a bath, and a day out,, oh my life where are we going to go? all i can say is, stop paying exorbitan wages to these politicians, who havent got a bloody clue, but have the money to send their children to private school,grrrr

Oh Sue - here here!!

I'm a very fit 62 year old. I have been looking after my husband who has Alzheimer's for the last 5 years. Is it difficult? My god yes it is the worst thing I have ever thought I would go through and sometimes I don't think I can continue but I always do. Is there help? Yes but you are there 24/7 .

I am a dementure champion nurse on a busy surgery ward. So many patients have to be specialed for there safety as well as assisted feeding . There should be wards for dementure patients . I must say I do think my hospital north Tees and Hartlepool Stockton do try there best and improving all the time . My mother passed away with Alzheimer’s two years ago and it was tough for us all .

The 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.

My dad had dementia and I lost him to the illness. It broke my heart seeing a piece of him disappear each day.

Dad 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.

And 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

Been 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

The 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

I 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.

I 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.

This 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.

I 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 ,

Just 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.

It 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 !!??

Where 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.

I 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.

I'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.

So 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.

I 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.

I thought it was a great representation of the kind of problems I face as a carer of my motber after six years living with me. There is still not enough joined up thinking. I regularly have several people ringing me in the same week from different NHS, social services, care providers, mental health nurses and equipment specialists. It becomes so confusing. And when you want to contact them often there is not a direct line and you have to spend ages trying to locate the particular professional you want. And then the endless assessments of a housebound person who loses mobility one week when ill and then gets it back a little the next week and then has to be assessed again. Thank goodness for the great book "The Selfish Pig Guide to Caring." Makes you have a laugh and feel normal again.

My husband has MND and,like you,I found The Selfish Pigs book very supporting. Being a carer for a loved one is s very lonely role.

I found it a very moving and helpful programme. A true reflection of my situation looking after my mum with alzheimer's disease for the last six years. My concern is with the huge amount of people you have to deal with. In most weeks several people ring me from NHS, equipment providers, social services, care providers etc znd continually assess a housebound 97 yrar old who loses mobility when poorly and then regains some mobility and is assessed again. There is little joined up thinking and can be difficult to get in touch directly with the different people you are dealing with. The one positive has been to read "The Selfish Pig Guide to Caring." I would recommend it to anyone. It makes you laugh and makes you feel normal.

I cared for my mother at home after she came out of hospital following a stroke. Her needs were judged as "very low" by CHC . She had developed late stage vascular dementia but this had not been diagnosed just explained as "agitation due to hospital enviroment" I had no idea what to expect. It was the worse thing i had ever experienced. Accused of everything by my mum from witchcraft to murder. Shouting screaming crying. No sleep. Constant packing of clothes and trying every which way to get out of the house. Threw things. My house was a battleground. Finally once she was diagnosed by the home carers and cleared of the constant UTIs she was assessed and judged to have dementia "as we can see the damage from the scans after the stroke" she was medicated with anti-histamines. Yes really. I was asked "are you sure you want to keep her at home as she has no idea where she is?" Well yes i would thanks. After an episode where she hurled herself to the floor in a fit of temper she broke her hip and after a 9 hour wait ended up A and E. Now we have pneumonia as well. Eventually she came home and gradually declined over a few months and GP ordered "hospice care at home" advised by CHC to cancel private home care as now CHC will pay. For 3 days no-one turned up. I had to scream down the phone to get DNs out. My mother died a few days later covered in bed sores and marinading in her own waste. Of course i complained and got as far as the Ombudsman. They think it is perfectly acceptable to be treated in this manner and said as much in their reply. Lessons will be learned. Be careful what you die of is all i can say. Dementia sufferers just do not matter as far as I have experienced.

This programme really brought back to me the last six months of my father's life and my struggle trying to achieve NHS Continuing Health Care for him which continued for 4 months after he died. I had a thick file of letters trying to convince the local Healthcare trust that he was eligible and was kicked back so many times. Finally 4 months after his death I was called to a meeting and a day later i was told he had been awarded all the costs of his care. The day I left that final meeting I felt numb. There was nothing to celebrate. In fact, thinking about that
struggle makes me cry whilst writing this. My father had only been in hospital for 3 days once in his life. There were so many lies from the gatekeepers of the NHS at the rehab hospital and the NHS Trust. It has seriously made me think of committing suicide before being in that situation myself.

I have just watch 'Care' and feel this is a true representation of how this country treat the elderly who have dementia. I have been battling with social care for over a year to get mum correctly assessed and also on the occasions she has been in hospital the discharge , the discharge process and communication from primary care has been poor.
I cannot understand how dementia is not a health issue when it affects the brain ! if it was cancer or heart or breathing your care would be paid for the NHS, However if you have dementia it is a social need and has to be funded by the patient. This is so unfair, however the main issue I feel is that there is a serious lack of good care/nursing homes for patient. Therefore no matter who funds the care the infrastructure is flawed and this country needs to wake up and smell the roses......
We are failing our elderly population and we should be ashamed as a nation and the government have no idea what is going on

Rant over
Very emotional daughter of a dementia sufferer

My mother had dementia she got terrible confused at times and didn't know why but we kept reassuring her that she will be taken care off sadly she passed away three years ago but because she had another underlying condition this is what she died off .l myself am a senior carer and look after vulnerable residents in a care home I see there conditions everyday and it can be heart breaking to see this your not only supporting the residents but there relatives as well we provide stimulation for them by singing and letting them join in with us and there happy

I was lucky enough to work for the Alzhiemers society in day care for over 9 years then left to have my son . I now work night shift in a care home but my love and passion and thing I miss the most was the work I did before. I look and all the jobs I see are voluntary. I have so so much to give and would dearly love abd value a job where I feel I make a difference and get so much from yet I like so many cannot work for nothing . So the system is stretched yes ,the day center I worked in has closed down but I am here ❤

I found the programme very good,it covered moist of what people go through when looking after someone with dementia,sadnees,guilt,
blame and anger. It also showed what our nhs is terribly under funded.My wife died this year aged 62 with Alzheimer's I looked after at home and in the last 4years spent 24 hours a day with her,iit was really hard towards the end because they have gone yet still with you.
To the lady who said,is there help,yes there is but it not always in the open,I was lucky My social worker was brilliant and arranged most things in the way of aids that we needed,but I still had to dig hard to find all the benefits. It's now nine month since I lost her,I miss her every day and tell her how much I love her but in the quite moments I long to hold her one more time,if there is one thing I have learnt through all this is life is to short and can be taken away in a flash,love today and hold on to precious moments.

No one likes to think they will ever be in the position of having dementia. I personally can not think of a sadder way to end a life. Not just for the person who has dementia, but for their family as well. Theory is all well and good but experiencing it is a a whole different ball game. I have recently begun to care for people with dementia and have discovered how lacking the system is. Surely there is someone in the government who has some experience of this terrible disease. Look into the staffing levels in the care homes. Look at how little time the people who want to care for your loved ones have to spend quality time with them because there aren’t enough people employed to cover the basic personal care ... ‘never mind anything else. ‘god’ help those in power that could help and don’t, if they find themselves in need of our care we will always do our best, but wish we could have more time to givie them the-comfort they will need as we barely have enough staff to cover the basics. Time is a luxury!

Well done its brillant it shows how hard it to deal with patients who had stokes and how hard it is on family and loved one dealing with it

My wife and I have had to deal with NHS, Social Services, assessment teams, continuing care, care homes .... the list goes on ...for our parents, for years. 'Care' on Sunday night was so emotional for us, it was EXACTLY what we went through, if anything our experience of assessment was even worse. Buck passing, no joined up thinking, no accountability, no continuity, deadlines ignored, and a real effort to put the costs into someone else's box. How many people realise that 'funded' care is AFTER all pensions and benefits have been taken, only then does 'funding' kicks in. Over riding impression is that nothing gets to the required standard until the problem gets really serious.

Thank you for your post John. My husband has Frontotemporal dementia (Picks disease) and I am now learning all I can about CHC funded care, in preparation for an uncertain future. I didn't know that 'funded care comes AFTER all pensions and benefits have been taken'. I am scared witless now as I have managed the NHS, Social Services, Assessments for benefits, Residential 'Respite Care' in care homes and the next step for us is CHC if/when I can no longer continue to care for my husband at home. Having to manage a behavioral dementia on my own is the worst hell I could ever have imagined. We are alone with it until not only Carer burnout, or Carer mental health presents as challenging the robust care of our loved ones living with dementia, but, we are it seems also alone with it until all of our personal, financial resources are exhausted too. What more can we give but all that we have in terms of emotional, physical, mental and now financial everything. CHC should be easier and more transparent to the uninitiated, non-professional, undervalued, exhausted Carers trying to secure funding for those we love, in their BEST INTEREST!! After all, none of us ever expect that our last days may mean that we lose mental capacity to make informed choices, or that we may need costs for care need. Instead we may need someone to fight on our behalf by completion of a form they may not truly understand...or even see. The program did not portray enough of the trauma associated with dementia care and even though they eventually received an award of CHC funding after their appeal, I was left with feelings of great trepidation because an exhausted Carer may not have anything left to fight with, through any needed appeal process. The program had two sisters united and fighting together, many Carers face these fights alone. I felt immense feelings of utter emotional impotence and immense fear of/for the day when our 'problem gets really serious'.
Thank you for sharing.

I found the programme Care good and Alison played the part very well . Im afraid the ending was very confusing and in no way would the lady have got CHC in our area with the mobility she had ? . My mother is more advanced in dementia than the character in the show . she is in a wheel chair but was turned down for CHC as they say she can weight bare ?? so walking into the care home would definitely not pass ..also the assessment required her to be peg fed even though she needs to be fed ? also the price of £700 for 24 hour care is way off ..we had to sell my mum and dads small 2 bed ex council house to pay the £1200 per week to the nursing home . the money wont last much longer and the council will only pay £700 towards care and the familly has to find the other £550 per week when the money runs out ? impossible for us . People in goverment havnt a clue as to what really is happening to these very sick and elderly frail people who have paid thier dues . Maybe they havnt had to worry about their parents in this way ? and for those who say we should look after our own parents , ? we did for 3years through severe behaviour problems . messing on carpets , getting up at all times of the night to find her mum or got work or put the gas on to cook dinner for everyone and getting violent at times when we tried to stop her . . I also had other caring commitments with a severe learning disabled 34 year son and a husband who needed care and eventually died last newyears eve . I am 65 myself and because i recieved a basic state pension I could not claim carers allowance ..something that even social workers or doctors didnt know was the case ? So MP,s should know the facts before they judge families . Sorry for the rant I am glad the show has got people talking for a while

I see "Care" as the "Cathy Come Home" of our day. So many areas were touched on with a single or simple reference, implying the tip of the iceberg, and the huge variety of individual experience, as there are so many personal and institutional variations as to what could and should be available and what the client and the relative can access, manage and be at peace with, during and after. The range of responses from those in wider/further circles, like the ex spouse, the other sister's employer, can also by chance make or break one's ability to self manage which you need to do as well as managing the changing situations you are facing. Many subtleties (like the washed out lighting, but higher colour for Jenny's time with her builder bloke) were impressive technically, but not many I have spoken to "saw" this. When Mary's speech or thoughts were screened, most I have spoken too say this as her real feelings which some may have been, but to me many were examples of the difficulty of expressing any thought, without the overlay of confusion and say frontal lobe aggro, which I am aware of. Awards should be lining up, but more importantly this discussion needs to come into the public domain, so that as s well as narrative from those with experience we can impact on those further from the actuality but who can have more impact on the systems which could and should aid clients and carers of any style to continue effectively from themselves and their client, and for more people in their middle well ness years to be more aware more ready, more mainstream about end of life in general and of tools such as powers of attorney, which are only one way of preparation.

The programme Care was very upsetting to watch for all Health Care Professionals, who are involved with vulnerable patients in hospitals, at home or Care Homes. I thought it showed staff as being less than sympathetic when treating the lady who had a CVA. As working in OT when has a kitchen assessment ever been called a "test", and with this lady's cognitive impairment making a cup of tea would have been way down the rehab process. The physio also seemed to have given up after 2 weeks, which again would not be the case in the hospital I work in, stroke rehab can take months to work with the patient to improve their independence, and there are also services in the Community to carry on the rehab in patients home. It portrayed the NHS in a negative light and the effects of stroke, you don't always have dementia after suffering a stroke, it must have been quite depressing for people who have relatives in this situation. We have a good discharge team that work closely with nursing staff, doctors, therapists, social workers, family members and of course the patient to provide the best and safest discharge we can. Please don't think we are anything like we were portrayed in this drama.

I have written and published Who Can Care For Me Now? Documenting supporting my brother from collapse through 6 months in hospital 9 months neurological care home 14 months care at home using live in carers pop in carers and finally directly paid carers. Our journey was unnecessarily arduous stressful and emotional. Took 4 years to overturn unsafe ccg decision of finding him not eligible but won at independent review panel
I felt compelled to write Who Can Care For Me Now? Hopefully to raise awareness and change for the better

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