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The new BBC TV show that wants to start a national conversation about dementia care

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

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 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.

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

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.

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

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!

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.

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 ❤

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 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

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 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.

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 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.