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

[RachelMumsnet]

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.

My mother in law is very afraid that my father in law will go the same way as his two sisters, i.e. dementia (don't know which kind) and in fact has already noticed various instances where he exhibits dementia. What is the best way for me to support her?

@CMOTDibbler

Hi Bahbak and Sally, as someone who spends a lot of time on the Elderly Parents board here I'm really pleased you are here.

My mum is 71 with fronto temporal dementia thats at the stage where she doesn't recognise food, cannot hold any kind of conversation, and can't read.

Sally, what did you find hardest about caring for your mum?

Bahbak - it seems many GPs are loathe to refer people to the memory clinic service as 'theres no point' or 'it won't change anything'. What do you think can be done to change this attitude?

Hardest for me was watching her distress and agitation and feeling helpless. That wasn't all the time - often we could make her laugh, sing with her, tempt her to eat - but not being able to make everything all right was so hard. Usually I resorted to singing with her, striking up with one of her favourites, like the Ink Spots' "I like coffee I like tea' and almost magically she would come round. If your mum can't hold a conversation, try recording some of her favourite pieces of music from her past on an iPod and playing them to her. You may find words come back that way. On www.playlistforlife.org.uk there's a video of a couple for whom this worked wonders.

@LaBelleDameSansPatience

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?

It is not inevitable. It is more common with vascular dementia. Each person's course is different. Do discuss this further with your GP to establish a plan of action as she progresses. There are many sources of support, Alzheimers Society (there are local support groups), Carers UK, Dementia UK which will help you understand the condition better, this in turn will help you better deal with your mothers frailties and give you strategies to alleviate her fears.

Hope this helps.

Thanks Sally, alas for mum her specific issues with language include song, and her taste in music has changed drastically, and now doesn't seem to bring her any pleasure.

So many activities recommended for people with dementia don't work for her - like looking at old photos really distresses her as she can't find words for anyone or anything

@ViewFromThe4thFloor

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?

I'll leave Bahbak to answer the GP question, and to be honest I don't have an answer myself. Personally I would say maybe leave her be for a bit if she's in pretty good health and has good support. Let her feel normal and independent as long as possible. Perhaps you could just encourage a general health check. Seeing the GP does help planning for the future and there may be medication that can slow things down a little at the beginning.

@CMOTDibbler

Hi Bahbak and Sally, as someone who spends a lot of time on the Elderly Parents board here I'm really pleased you are here.

My mum is 71 with fronto temporal dementia thats at the stage where she doesn't recognise food, cannot hold any kind of conversation, and can't read.

Sally, what did you find hardest about caring for your mum?

Bahbak - it seems many GPs are loathe to refer people to the memory clinic service as 'theres no point' or 'it won't change anything'. What do you think can be done to change this attitude?

Hi. This attitude is changing. There is a real drive to increase timely diagnosis. GPs are becoming more alive to the benefits of a diagnosis- this is a gathering momentum with plenty of evidence.

Ref: World Alzheimer Report 2011. The benefits of early diagnosis and intervention.

Thanks Sally music has been important to Dad until recently I was taking him to concerts, the last one in December was a trial due to his agitation and odd behaviour ( standby up, muttering, e mptying his pockets not the floor).I heard your interview on Midweek and will try to put some music together for him to listen to at home.

@CMOTDibbler

Thanks Sally, alas for mum her specific issues with language include song, and her taste in music has changed drastically, and now doesn't seem to bring her any pleasure.

So many activities recommended for people with dementia don't work for her - like looking at old photos really distresses her as she can't find words for anyone or anything

So hard for you. Did she enjoy hymns ever? Or radio theme tunes? Or birdsong? is it worth investigating different types of audio and trying them with her on a trial and error basis?

Apologies for the speed of responses and their length- my typing skills need to be improved. It is also so difficult to answer the questions succinctly-we want to pick up a phone!

CMOTdribbler - my mum also had fronto-temporal dementia and like yours, nothing seemed to give her pleasure any more. . Part of the nature of the fronto-temporal damage is that the person seems to stop caring about anything. Mum had been an English teacher but no longer wanted to read (even when she could). She had loved music - all forms - and used to sing in good choirs (for Sally's benefit: the Scottish Philharmonic Singers) but no longer took pleasure in it.

One thing that my aunt told me shortly before mum died 2 years ago that really helped is that in time, I would be able to remember the "real" Mum - and take pleasure in that memory rather than the decline of the final years.

Hello Sally, I'm an occupational therapy student - I absolutely love the idea of a personalised playlist for people with dementia. I have a project coming up which involves designing an intervention for either care workers or family members of residents of a care home specialising in dementia. Do you think this would be something I could use?

@WynkenBlynkenandNod

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 ?

It is common for people to revert to their first language. It is important that this is factored in to their care planning and someone is provided who can communicate in their first language.

@deemented

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.

I know that awful feeling of dread. But what I can tell you is that there will be good times along the way if you concentrate on making the best possible life for him. My motto in my book is "Catch the moments as they fly" - a quote from the Scots poet Robert Burns. I learned to grasp every bit of in-the-moment happiness, all the small, funny times together, the smiles and kisses, the precious experiences shared. My mother had many "best days of my life", as she put it, along the dementia way - and I had to learn to make them mine too.

Prettybird - mum used to love to sing too but not since her dementia started.

I really hope that after she dies I'll be able to remember who she was, rather than the shuffling shell that spits food and does things she's have been horrified to see.

.....it's taken me nearly two years but I'm just about there

@WeeSleekit

Hello Sally, I'm an occupational therapy student - I absolutely love the idea of a personalised playlist for people with dementia. I have a project coming up which involves designing an intervention for either care workers or family members of residents of a care home specialising in dementia. Do you think this would be something I could use?

This sounds as if it might be perfect. Can you go on to our website www.playlistforlife.org.uk and see if the ideas there fit what you have in mind. Then email us via a contact form on the site, explaining your project and someone will get back to you. Good on you. Great idea. We'd love to work with you.

(....dh could always tell those times when I'd visited and she'd been slightly "better" as I'd come home more distressed as I'd see glimpses of the person she had been - and got a sense of the distress she was in, as there always seemed to be a little bit of her that knew what was going on and hated it )

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.

@RedundantExpat

My mother in law is very afraid that my father in law will go the same way as his two sisters, i.e. dementia (don't know which kind) and in fact has already noticed various instances where he exhibits dementia. What is the best way for me to support her?

I'd say the best way is to keep enabling her to talk to you about it, and support her in getting a diagnosis if that would help. And then keep being there for her. Don't let her feel alone - that's the worst thing.

@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.

@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.

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.

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.

@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.

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