“End the Dementia Care Costs Betrayal” …….

On Monday the Daily Mail emailed me asking if I would be interviewed as part of their latest campaign:

“End the Dementia Care Costs Betrayal”

I’m always reluctant to say yes to tabloids. The language they use can be very negative and manipulative. Often they have tight deadlines and I knew I wouldn’t be able to fit in a visit from a journalist, so I declined suggesting other alternatives like the members of the 3 Nations Dementia Working Group who have far more expertise between them than me.

The return email was very kind, asking if I had a 30 minute slot to spare. There was something about the email that made me change my mind. Knowing it would get complicated I said I couldn’t be interviewed but I would write something if that would help. That would mean I could tap away in my own time. They agreed and today they published it in the Daily Mail.

A photographer called in yesterday tea time. Apparently I’d met him recently when he took some photos for something else!  As usual, many photos were taken. So I was surprised they chosen one with my neighbours satellite dish coming out of my head – ha!

They sent me the copy yesterday evening to check through. I was more concerned with looking for the right language and was please to see I wasn’t referred to as ‘suffering’ from dementia. Some of my words had been changed but that’s normal as words have to fit the space etc, but on reading it now, I realised I missed out so much or should simply have said so much more.

I should have said how selling a house is one of the most stressful things we face in life, so imagine a family having to go through this at a time already filled with stress. The housing market is in a slump at the mo, so what if it doesn’t sell, putting extra stress on the family.
But more importantly what happens to those living alone, who don’t have family or have family who are detached and less than supportive? Who looks after their affairs, who makes sure they’re  treated fairly? Are people left vulnerable? Forced to sell a house for peanuts simply to get the fees for the home?

I mentioned “Only the wealthy few can afford the luxury of well staffed, well supported homes.” Yet forgot to say how not all these homes offer knowledgeable and appropriate care for those with dementia, such is the state of dementia care.

Anyway here’s a link to the article on line – I did my best with the time available….I hope they ask my playmates in the 3 Nations as they could offer a far more in depth article…..


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

16 thoughts on ““End the Dementia Care Costs Betrayal” …….

  1. The amount that people living dementia, and families, pay for social care – or contribute as unpaid carers – is a scandal. I prefer to talk about sharing the risk socially, as we do for costs defined as “health care”, rather than saying it should be “free”.

    I also think that the advice sector could do better in supporting people to have their rights; particularly in two areas. I do have some professional knowledge, but please bear in mind that the following is a rough summary and please take professional advice on these important matters:

    1. Selling your house: no-one can make you sell your house at a particular time. The Care Act statutory guidance gives people the right to have charges for care accumulate against your assets. Yes, local authorities can include your property in a charging assessment, but when a person pays (or the estate pays after a person dies) is more flexible.

    2. When families are asked to ‘top up’ care fees above local authority rates. The Care Act guidance states that local authorities have to cover the cost of good quality care in the local ‘market’. Families can be asked to pay a top-up if their is a genuine choice of options and maybe one has a nicer room with a view; but local authorities sometimes (or more than sometimes) ask for top-ups whenever the care goes above a standard rate that they have set.


  2. Sorry, me again… I do think it’s perfectly fair to means test contributions to accommodation costs. Some of the fees for a care home go towards the ‘bed and board’ element, and it wouldn’t be right, in my view, for this to be free of charge. If a person in a care home owns a house, then there can be other options such as the family renting it out to cover the ‘bed and board’ element.

    Care costs are another matter – that’s when the randomness of who’s unlucky enough to develop dementia should be paid for by social risk-sharing.

    Liked by 2 people

  3. I love, Wendy, how your sense of humour never escapes you. I had a good chuckle over your photo with the satellite dish arising from the top of your head 😄👏🏻

    Liked by 2 people

  4. I think you were very brave Wendy. It is hard to talk to the press when ultimately you have no control about what they write. You did an excellent job under the pressure of time too. Well done you !. I think you are an absolute marvel. You took responsibility, knowing your own direct experiences are highly relevant. I applaud you!

    Liked by 2 people

  5. Hi Wendy, I have not long finished your book and left a review on Amazon saying anyone who works with or is a relative of a dementia patient/sufferer needs to read this book but I struggled. I didn’t want to say suffers or patient and I see in your blog you don’t like the word sufferer. How would you like it described?
    The reason I didn’t like this terminology is because there is so much more to the person than just being a sufferer or a patient of this disease. x

    Liked by 1 person

  6. Our Mum is now at her end of life sadly and had to pay for her own care when cancer sufferers get so much. Don’t get me wrong I know they need it just as much as my Mum but its not fair. It seems to be sweeped under the bus all the time and perhaps if Brexit hadn’t been going on someone may have done something. Sadly too late most probably for Mum!


    1. If she is nearing the end of her life, it might be possible for her to qualify for fully-funded NHS care. Dementia, and other long-term conditions, do have their own end-stage symptoms, and there might come a point where a doctor is prepared to give a prognosis that she’s near to the end of life. It’s not always terribly clear, and from what I understand it’s easier to judge with most cancers than it is with dementia (or kidney failuire, or heart failure, or chronic lung disease). It will depend on the individual.

      Of course it’s not top of everyone’s list to think about such things when a loved one is dying, but “near to end of life” (generally taken around a prognosis of three months to live) is one of the criteria for fully-funded NHS care.

      I do apologise if that’s an insensitive thing to post, and I hope things go as well as they can for your mum at the end of her life.

      Liked by 1 person

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