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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.

RachelMumsnet (MNHQ) Wed 29-Jan-14 21:39:35

Just a final mention that Bahbak recommends a book by Dr Nori Graham, who has been helping out during the webchat - Understanding Alzheimer's Disease and Other Dementias

SallyMagnusson Wed 29-Jan-14 21:30:44

It's been such a pleasure to talk to you all and also to hear your stories. So important to bring all this into the open. I'm delighted to hear that Mumsnet is looking at the possibilities of a Dementianet. Great idea. Hope you enjoy Where Memories Go if you get a chance to read it.

RachelMumsnet (MNHQ) Wed 29-Jan-14 21:30:16

Tensmumym

Thanks Dr Bahbak. http://www.aphasia.org/content/communication-tips looks really useful. Thank you Mumsnet - most useful webchat. Would it be possible to have a Dementia section on the Talk site?

It's great to know this webchat has been so useful to people and we'll certainly discuss the possibility of a dementia section on the talk boards - we'll keep you posted on this.

DrBahbakMiremadi Wed 29-Jan-14 21:29:37

Thank you everyone, sorry that we were not able to answer more questions. There are a number of sources of advice, information and support- Alzheimers Society, Dementia UK, Carers UK, Independent Age, Age UK, Silverline, Housingcare.org, Carehome.co.uk to name a few.

It is exactly the issues you are raising and the need for a holistic approach that led me to set up Red and Yellow Care.

We are also in discussions with Mumsnet about establishing a 'dementianet' so we can do much more of this.

Mignonette Wed 29-Jan-14 21:27:17

Thank you both very much.

Shenanagins Wed 29-Jan-14 21:27:16

Thankyou so much for answering my question I now feel that I can at least do something to be supportive.

Tensmumym Wed 29-Jan-14 21:24:44

Thanks Dr Bahbak. http://www.aphasia.org/content/communication-tips looks really useful. Thank you Mumsnet - most useful webchat. Would it be possible to have a Dementia section on the Talk site?

RachelMumsnet (MNHQ) Wed 29-Jan-14 21:22:32

We're afraid we're going to have to wrap up now. We're sorry that Sally and Bahbak haven't been able to get through all the questions. We hope that even if your question hasn't been addressed, there may be something useful in some of their other answers.

Sally's book Where Memories Go will be read by Sally on Radio 4's Book of the Week next week starting Monday at 9.45 am daily. Sally's charity that she mentioned earlier is Playlist for Life which encourages every person with dementia to have access to a playlist of personally meaningful music delivered at any time of the day and night on an ipod - and explains how best to do it.

Bahbak and the Red and Yellow team offer a comprehensive specialist dementia service, currently within the M25, offering a single point of contact for life. See more at the website redandyellowcare.com

WynkenBlynkenandNod Wed 29-Jan-14 21:21:52

Thank you very much Bahbak.

DrBahbakMiremadi Wed 29-Jan-14 21:18:48

DrBahbakMiremadi

Shenanagins

So glad to have found this and hope to get a question in on time. My dad has just been diagnosed with dementia but stays too far away for me or my siblings to play an active supportive role. What can we do from a distance to help both my dad and mum cope with this?

Technology can really help here. I regularly have lunch with my parents whilst they have their breakfast in the US over skype.

Setting up a good local care package and opening and keeping regular communication with their established support network whether it be GP or neighbour.

SallyMagnusson Wed 29-Jan-14 21:16:47

Shenanagins

So glad to have found this and hope to get a question in on time. My dad has just been diagnosed with dementia but stays too far away for me or my siblings to play an active supportive role. What can we do from a distance to help both my dad and mum cope with this?

I would get your mum an iPad, teach her how to use it and Skype them daily. We had Christmas dinner last year with my daughter (who was in Los Angeles at the time) sitting on the table beside us, as it were. You and their siblings can be in their midst as often as you like. Also maybe work out a rota with your siblings to go there as often as possible in person and sort out the best care package you can.

DrBahbakMiremadi Wed 29-Jan-14 21:15:58

Shenanagins

So glad to have found this and hope to get a question in on time. My dad has just been diagnosed with dementia but stays too far away for me or my siblings to play an active supportive role. What can we do from a distance to help both my dad and mum cope with this?

Technology can really help here. I regularly have lunch with my parents whilst they have their breakfast in the US over skype.

RachelMumsnet (MNHQ) Wed 29-Jan-14 21:13:34

Tensmumym

Hi Sally(and Dr Bahbak Miremadi) I heard you on Midweek this morning and can't wait to read your book. The positive suggestions you have made - such as the use of music as therapy - are among the very few positive things you hear in relation to dementia. "Contented Dementia" by Oliver James covers similar areas and is a very good, heartening read for carers. My 84 year old mum has a probable diagnosis of Alzheimer's - not 100% as she hasn't had the brain scan yet. She has expressive aphasia where she has word loss. My question is regarding the aphasia - are there websites you can recommend with effective exercises/treatment? Most of the information I have read seems to suggest that treatment is effective for stroke patients and I wondered if this applied to those who haven't had a stroke? Many thanks.

Bahbak suggests you look at this aphasia support group

DrBahbakMiremadi Wed 29-Jan-14 21:12:39

WynkenBlynkenandNod

Thank you Bahbak. No one where my Mother is now can speak German. My Brother lives in Asia but right by a Swiss run Dementia Home which has had a lot of publicity recently. He is keen to investigate this as an option but obviously a massive upheaval for her.

Do you think she would be better in UK but with no one who speaks German except from me (badly) or to make the huge move to somewhere German and English speaking by my Brother? She is fairly stable currently.

The best advice I can give here is to discuss this with her. It is also not a certainty that she will loose her ability to understand English.

SallyMagnusson Wed 29-Jan-14 21:11:15

whenwillisleepagain

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.

I hated that aspect of it, to be honest. The problem is that measurements are made by asking questions, and my mum found it very frustrating not to be able to answer questions. And in our case the memory clinic really wasn't able to do much. However the official view now is that you really ought to get your mum into the system, so I suppose I ought to tell you that. Best thing perhaps is to make the experience as much fun as possible for your mum. Combine it with a treat and have a laugh together at the daft questions the doctor asks. But I do still maintain it's crazy to establish degrees of dementia by asking questions, the one thing that's most difficult for them.

Shenanagins Wed 29-Jan-14 21:04:01

So glad to have found this and hope to get a question in on time. My dad has just been diagnosed with dementia but stays too far away for me or my siblings to play an active supportive role. What can we do from a distance to help both my dad and mum cope with this?

DrBahbakMiremadi Wed 29-Jan-14 21:03:59

whattoWHO

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).

Very supportive of 'Dementia Friends'. It is a important part of the collective need to change attitudes and improve understanding of the condition. Highly recommend taking part.

WynkenBlynkenandNod Wed 29-Jan-14 21:02:33

It seems such a huge thing for her to even make the flight to be honest Quint and it seemed impossible when first mooted but she really is very well now compared to when she moved back into the CH in December and I think it would be the spring or never. But there's a lot that would to be looked at and discussed for it to happen.

I have read that hearing is one of the last senses to go and I hate the idea of her trapped inside herself listening to what to her would be a foreign language.

WeeSleekit Wed 29-Jan-14 20:59:35

Thank you very much Sally! It is a group project so I will speak to the other students and hopefully be in contact via the website soon!

DrBahbakMiremadi Wed 29-Jan-14 20:59:30

We thought it important to make a general comment on the importance of a healthy lifestyle. 'Healthy heart, healthy mind'.

SallyMagnusson Wed 29-Jan-14 20:58:36

woodlandwanderwoman

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.

I so recognise what you're saying. I wrote my book as much to share my mistakes and what I learned as anything else. So much I got wrong … trying to force my mother to enter my reality rather than graciously entering hers, trying to argue her out of some fixed idea rather than quietly diverting her, upbraiding her about her behaviour when she couldn't help it and ended up being made to feel guilty. All these things I had to learn. And even when I had learned them I still lost my patience and got it all wrong. We take so much trouble to learn how to be good mothers to our children - I reckon we need to take the same trouble to learn how to be good mothers to our parents. Only trouble is there's nobody to teach us.

Quinteszilla Wed 29-Jan-14 20:56:18

What a predicament Wynken. Maybe that is another reason why I should not grow old here, but move home.

But how important is language if they just talk nonsense anyway, like my mum.

WynkenBlynkenandNod Wed 29-Jan-14 20:54:26

Thank you Bahbak. No one where my Mother is now can speak German. My Brother lives in Asia but right by a Swiss run Dementia Home which has had a lot of publicity recently. He is keen to investigate this as an option but obviously a massive upheaval for her.

Do you think she would be better in UK but with no one who speaks German except from me (badly) or to make the huge move to somewhere German and English speaking by my Brother? She is fairly stable currently.

SallyMagnusson Wed 29-Jan-14 20:52:37

yellowflowers

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?

There's a chapter in my book where I talk about this from a personal perspective (chapter 35). Do take a look if you can.

DrBahbakMiremadi Wed 29-Jan-14 20:51:19

yellowflowers

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?

This is a difficult topic that raises ethical, legal and religious issues and very strong opinions on either side of the debate. It is important that individuals with dementia, their families and carers discuss 'end of life'.. Notably an 'advanced directive' as to what medical interventions you would want at the end of your life. It is also important to consider that people's opinion and perspective can change during the course of their illness.

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