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Understanding dementia - Join webchat with author and journalist Sally Magnusson and Dr Bahbak Miremadi of Red and Yellow Care, 8-9pm Wednesday, 29 January

(95 Posts)
RachelMumsnet (MNHQ) Thu 23-Jan-14 14:31:04

Dementia affects around 700,000 people in the UK, 15,000 of whom are under 65. Next Wednesday evening between 8 and 9pm we're running a webchat to discuss the issues surrounding the condition and share experiences.

We'll be joined by journalist and author Sally Magnusson. Her book Where Memories Go: Why Dementia Changes Everything chronicles the sadness and loneliness and unexpected laughs and joys of caring for her mother as dementia began to overwhelm both their lives.

Also joining us is Dr Bahbak Miremadi, director of Red & Yellow Care, a group of clinical dementia specialists who offer integrated care and support for people living with dementia. By treating the whole person, not just the condition, they aim to help people with dementia and their families enjoy life beyond diagnosis. Dr Bahbak trained as a psychiatrist and left the NHS in 2009 to found Red & Yellow.

Join the webchat with Sally and Bahbak, and other Mumsnetters affected by dementia on Wednesday 29 January between 8 and 9pm or post a question in advance.

whataboutbob Thu 23-Jan-14 17:52:39

Good to know the predicament of us sandwich generation people is being taken seriously on MN. Also thanks for making it in the evening as many of us work on top of being carers and parents.

whataboutbob Thu 23-Jan-14 18:07:32

One first question. For me guilt has been a crippling experience as. I have tried to support my father, from noticing the first signs of memory loss about 7 years ago, to the difficult situation now where he is not safe to live in his home, has little insight into his disability, and absolutely refuses to move. The guilt is to do with me knowing I will not care. For him to the end. I am an NHS worker and have seen how devastatingly dementia progresses through someone s mind and body. d I keep comparing what I am able to do, with what is done for the elderly in many other cultures- care at home, by children and children in law. I remind myself that in these cultures daughters and daughters in law may no t have much choice in the matter, but still the guilt pursues me. I have seriously explored moving to care for my dad, or him living with us, but recent events have shown me I would unquestionably have to give up work, my marriage may not survive, and my children would suffer. How does one deal with the demands of a demented parent, keep some life for oneself, and not sink under the guilt? Sorry that was long!

CMOTDibbler Thu 23-Jan-14 18:27:33

I'm really glad to see this! Theres so many of us caring for parents with dementia at the same time as caring for our children (my son is 7).

forgetandforgive Thu 23-Jan-14 21:44:00

my mum who is in her 70s started showing early signs of dementia 3 years ago. i noticed that its starting to get worse eg memory and repeating the same thing without realising. me and my other sister who lives very close to mum go round everyday to visit her. we would takes turns depending on who is free and go shopping and doctor appointment with her. my sister also look after her MI L who is 92 yo. She cooks and clean for her. even though important not working at the moment I feel like my hands are tied. i have to young boys 8/9half yo. they are very challenging kids.

deemented Sat 25-Jan-14 07:47:54

I am so glad to see this. My lovely dad was diagnosed with dementia last week and we're just at the beginning of this all. I'm really scared about what the future holds for him, for us. We're awaiting a brain scan to find out the type of dementia he has. I don't really have a question, but am really interested to read and learn.

LaBelleDameSansPatience Sat 25-Jan-14 19:30:44

My DM was 'diagnosed' with vascular dementia last year, by a doctor who said, 'If you must have a diagnosis, I suppose I would say 'vascular dementia.'' She was not exactly interested .. and for a year or so had said that DM was not 'mad' but was having flashbacks from a traumatic war (she is 90 and a German Jew).
She is exactly the same person that she always was; she just can't remember how she got to live here, what has happened in her life, what happened half an hour ago. I wish I could help more; I feel so guilty that I don't help more - for example, I am sitting down here with my family while she is upstairs on her own (albeit with TV and cats for company) ...
I don't know how I could help more .... I wish I could. We all live together: DM, me, DH and DD, with various cats, dogs, chickens, etc

whenwillisleepagain Sat 25-Jan-14 21:05:56

I am about to ask the GP to refer my mum to the memory assessment service where she lives - I think - and I'd welcome your view on the value of this. My mum's life has suddenly unravelled after a mysterious fall and stay in hospital. I organised a home visit from the GP to screen mum for dementia and she was 'borderline'. That was about 4 months ago and Mum's had another hospital admission and is more forgetful, along with a range of other things that are worrying me and her neighbours. The GP was pleasant but ambivalent about the value of referring Mum to the memory service 'it's often upsetting for them and anyway what can they do?'. Mum looked at me like I had handed her over to the police whilst she was answering the GP's questions, so I feel am going to end up being the one who triggers a series of events that will be really upsetting - but I'd always understood that early assessment and diagnosis was a good step. What do you think? And thank you, this webchat is so welcome.

caketinrosie Sun 26-Jan-14 02:45:46

My dad had vascular dementia, and although I missed the early signs it did eventually become clear that he was becoming very unwell. Then suddenly without warning it was like a light had been switched off and my dad was gone leaving a man I didn't know behind. From that moment I grieved for him every day until the day he died 4 years later. The guilt before he died and the guilt after is crippling. I miss him so so much and feel so robbed of time getting to know my dad as a man not just as my dad. I am terrified that I will have the same condition because I know how horrific it will be for my family to watch. There seems to be a sea of change in dementia research and support and it is long overdue. I hope one day it is as supported as other more high profile charities to ensure all sufferers and their families get the care and support they need.

woodlandwanderwoman Sun 26-Jan-14 03:56:30

I would like to ask how to go about finding help and support both for my mother who was diagnosed with dementia 18m ago yet still doesn't know the cause, and also

woodlandwanderwoman Sun 26-Jan-14 04:03:23

Posted too early

... For us as a family trying to help her and learn to live with the changes. I feel like we are constantly learning from our mistakes and the guilt of knowing you could have handled a situation better is awful.

Whilst I am of the generation who can seek out a bit of support through medium such as the internet, my father has no one to talk to about what is happening or what to expect next. I'm sure like many of us he feels like his best is not good enough due to inexperience and close attachment to my DM. She is just in her early 70s.

Thank you in advance.

pantsforteaagain Sun 26-Jan-14 11:28:12

Thank you so much for this talk.
DM is having treatment for dementia. I think she's taking some form of mematine hydrochloride because she already has a slow heart and so couldn't take acetylcholinesterase inhibitors. She's been taking tablets for about 2 years and is at the maximum dose she can manage without dizziness (15mg a day). My question is what are we likely to face in the future? Does she just gradually get worse? Or I've heard the drugs hold it at bay and she's stable for about 5(ish) years but then gets suddenly much worse, as if the drugs have stopped having an effect. I know it's impossible to predict on individual cases, but I guess there are studies that give some kind of idea of what the future will hold and it would help to be prepared...
Thanks for any information

caketinrosie Sun 26-Jan-14 15:16:18

My question is, how far away is the research in finding a way to halt the regression permanently?

buzzy1 Mon 27-Jan-14 13:43:17

What are your thoughts on the Dementia Friends initiative, and is it enough to raise awareness of dementia across society in a tangible way?

whattoWHO Mon 27-Jan-14 14:37:27

Such a worthwhile webchat.

My question - more people are being diagnosed with dementia, yet little investment is being made into research compared with other health issues. And even less focus is being given to non-drug therapies. Do you see the Dementia Friends campaign as a step towards more investment in research and therapies?

I guess that until the nation understands the scale of the problem, we aren't going to feel so 'angry' about it as we do cancer (for instance).

WynkenBlynkenandNod Mon 27-Jan-14 15:49:31

Very glad to see this. My Mother has mixed Dementia and is German but fluent in English having been in UK for 50 years. One thing that niggles away at the back of my mind is that she may revert to her native language (as I have read can occur) and be stuck in a care setting where she is unable to communicate with her Carers.

How often is a second language totally lost and any advice as to any special considerations we should maybe be making regarding this ?

TheTertiumSquid Mon 27-Jan-14 16:43:43

What do you think the value of earlier or more widespread diagnosis would be? We hear stats like only 45% of cases receive a diagnosis, but what are the tangible benefits of receiving a diagnosis?
My gm is 91 with memory problems and cognitive changes and I wonder if there is any point taking her to a memory clinic for an assessment.
Secondly, if diagnosis is valuable in and of itself, would it be valuable for GPs to actively offer support and more tests/referrals to high risk patients?

yellowflowers Mon 27-Jan-14 18:48:27

Having watched a close relative live with and then die from dementia with her last few years very angry and sad, I think I would prefer to kill me myself before it got to that stage. Is there a stage at which you are so far gone your quality of life is awful but not so far gone as to know how to kill yourself? How do you recognise this point?
I am 35. Do you think by the time I am old there will be a legal way to do this?

ViewFromThe4thFloor Mon 27-Jan-14 21:05:38

My mother, 84, has progressively increasing memory loss. Originally it seemed like short term memory problems, but it's definitely extending back now to things she used to know very well. Repeated suggestions to visit her GP have been met with reluctance along two main themes "Why do I need to do that, sure I forget stuff sometimes, but doesn't everyone, I don't think I have a problem" and "There is nothing they can do anyway". The irony that she doesn't remember the problems passes her by.

I thought we were making progress with the notion and then she read an article in the paper which suggested it was pointless.

She is otherwise in good health and has good support.

Is it worth pushing? If so, any suggestions as to the best way to make it happen? And what kind of things might a GP be able to do?

IDismyname Mon 27-Jan-14 22:03:46

I am reading this whilst sat at my parents kitchen table. I'm looking after my Dad who has dementia while my Mum has 3 days away. I try and do this 3 or 4 times a year. He was diagnosed about 4 years ago, and has been stabilised by drugs to halt his decline. Meanwhile, prostate and kidney problems dog his - (and my mothers) lives.

I have tried to persuade my mum to mix with other carers who are looking after spouses with dementia, but she has failed to connect with them. What can you suggest? She is a proud and capable woman who struggles to get through life with few people to talk to in a similar situation.

I'm so glad that this is out in the open. The more people who are 'diagnosed' with memory problems, the more information the authorities will have. The more information they have generally, can only help those trying to find a cure, and for governments to allocate enough resources to pay for the huge amount of care that we will all need.

peanutbutterandbanana Mon 27-Jan-14 22:35:04

I cannot wait to read Sally's book. My mother was diagnosed with vascular dementia five years ago, soon after my father died. She refused to leave her house or to consider a care home and when I finally got a live-in carer (2 years ago) my mother became very confused at the "intruders" in her house and after 4 days she attacked the carer, dialled 999 screaming at them to come and rescue her. I managed to persuade the police to take her into hospital where they duly checked her bloods, urine and blood pressure and declared her 'well' and wanted to send her home. I knew that this would not work (no carer was safe with her and she was not safe on her own) but that here was a window of opportunity to get her into care . After talking to the poor carer on the phone the doctor called the duty psychiatrist who came out at midnight and he assessed her, put her into a mental hospital and the psychiatrist there decreed she needed to be in a specialist care home. It was a blessing to find someone who knew what I was going through, especially as I have three children of my own, the youngest was 8 when this was going on. Two years later my mum is nearly 91 and I watch her 'disappearing' day by day, until one day, I know there will very little left that is 'mum'. For now she is still my mum and I love her more than ever. I still enjoy her hugs and her smile and the familiar smell of her, but other than that she has all but gone from me.

My experience in A & E that day and recently in an NHS hospital after she had a fall at her care home, is that medical staff are just not up to speed with dementia, how it expresses itself and how to understand the needs of a patient with dementia. Last week they were all for throwing her under an anaesthetic to fix a suspected broken pelvis (it wasn't) when I knew that such a procedure would indeed kill her, or MRSA would do the job afterwards. Whereas although mum's death would be a blessing on many fronts, I want that death to be comfortable, dignified and stress and pain free. Understanding dementia has to be a priority for our health professionals. Do you know if this issue is being addressed adequately?

LaBelleDameSansPatience Tue 28-Jan-14 08:46:42

My question is whether the personality change is inevitable. My 90-year-old mother has been told by the GP that she 'probably' has vascular dementia (on the strength of one short consultation, talking mainly to me). She has very little short-term memory and never remembers where she is, how she got to being here etc. however, she is still herself ... She knows me and my daughter, is polite, kind ... Lovely as always, just so frightened.
People tell me that she will get angry, difficult, cease to recognise us ... Does this always happen?

maxmissie Tue 28-Jan-14 09:50:24

My gm is nearly 92 and has had dementia (plus breast cancer) for at least the last 10 years - it has been a long slow descent and now she has hit the point where she barely knows who my dad and his siblings are and can do virtually nothing for herself. My dad (who is 70 this year) lives with her and his siblings help to care for her, plus carers three times a day.

I think she has only lived as long as she has because she has not gone into residential care but has a pretty good quality of life as there is always someone around. However she has now effectively regressed to needing the same level of care as a baby - she has to be spoon fed and given drinks, she can't move around without help, she wears 'nappies', she doesn't know who anyone is, she does pretty much nothing all day etc, she naps in the day and then can't sleep at night and is then exhausted in the day, she gets very agitated and the same certain things stick in her mind.

Meanwhile my dad's life is on hold, as every time he wants to do anything it has to be arranged in advance to ensure someone else is around. I worry that my dad will become unwell or die before she does and the last part of his life will have been one large sacrifice.

I have absolutely no idea what quality of life she has or whether she can feel any pain (from the breast cancer) which is now slowly getting worse. Yet it would be difficult if she needed to go into hospital as she wouldn't have a clue what is going on and it would agitate her even more. Somehow her body keeps going even though both her mind and body are unwell and weak.

I know my take on this is probably distanced by it being my gm rather than a parent and maybe I would feel differently if it was one of my parents. However she is not the person I remember as my gm or my dad knows as his mum.

I suppose my question is, what is the point? She won't get any better yet she doesn't really get any worse, she appears to have no quality of life and caring for her impacts significantly on my dad and his siblings. I would not want this life for myself or my children or my parents, and I am not sure why anyone would want this either. And yet this is the position so many people are already in (and will be in the future) with the only alternative being a residential home where the level of care would be lower (as I don't think one on one care 24 hours a day happens in many care homes) which is probably going to hasten death in a difficult and undignified way. Not much of a choice either way is it?

Sorry for the long post.

whataboutbob Tue 28-Jan-14 21:36:50

That is a difficult point you raise, but one that needed to be made. I just wonder what people did in the past with elderly relatives who reached this degree of dependence. Or maybe it just didn't happen, and modern medicine is creating/ sustaining these incredibly impaired old persons, but failing to address the cost to the carers and society as a whole.

woodlandwanderwoman Wed 29-Jan-14 06:43:54

To follow, I haven't joined a webcast before. Do we just log onto here and will a copy of the transcript be available afterwards in case I can't make all of it?

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