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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.

deemented Wed 29-Jan-14 07:09:16

Ok, I've thought of a question.

I'm a single parent to four children, three of whom have additional needs. I'm also the only person my dad has. As he declines further into dementia, what help will be available for him, do you know? I so so want to be able to care for him myself, but I'm not sure I'm going to be able to, given the demands on me already. This makes me incredibly sad and i feel so very guilty - I was always taught we looked after our own, and the thought of having to have someone else look after him makes me quite apprehensive sad

googoogoggles Wed 29-Jan-14 12:23:06

My mother has been in the small residential dementia unit of a care home for the last six years, after I could no longer keep her safe/with enough carers going in, in her own home (I live 300 miles away). Aside from the grief and the guilt and all the many emotions we share, some of my concerns are now practical, too. She has "dipped" again in recent days, can no longer walk (hoisted in and out of bed into a wheelchair), is on liquid food (forgets to swallow and nearly chokes), has been doubly incontinent for a long time, can no longer speak and has not recognised me or my brother for almost two years. The care home staff are looking after her newly developed bed sores and have ordered a wheelchair with a restraint so she can be moved safely and won't fall (I possibly sound emotionless but I cannot begin to describe the anguish I feel about this).
We have been funding her care home fees from her pension and the sale of her house and funds are now getting low. At what point is her care deemed to be nursing care, not dementia care in terms of care and care home fees? The people at the home are great and manage well but never talk about her "nursing" needs, just her "care needs" and I understand that if she is deemed to have nursing needs she will have to be moved from the home. I want to keep her there as long as possible as she is well looked after but I am worried about her future care and the financial aspect of that care.
I feel for everyone on this journey with a loved one and although I cannot be online during the Q&A session, I will be reading all the responses.

Huitre Wed 29-Jan-14 12:48:55

I have a question.

What can be done by the family of a person who is in the early stages of dementia but refuses to even consider the possibility that this might be the case? My 69 year old mother is declining fast in terms of her faculties (forgetting eg how to cook a jacket potato or what a dressing gown is unless able to see one) but absolutely will not visit her doctor to discuss things.

Mignonette Wed 29-Jan-14 13:26:42

Good evening to the both of you - Oh how needed this web chat is.

My Husband was a former Dementia Ward Charge Nurse and was one of the first to research how modifying the environment could affect the behaviour and emotions of patients on the unit. This was back in the 80's before Kitwood et al nd when Dementia care was even more of a Cinderella service.

He encouraged the bringing in of photographs and the clothing/personal possessions that a patients identity was rooted within. He had a gardening club and encouraged families to bring in the garden tools that belonged to the patient. Seeing the connections made between what they held in their hands (time and work worn wooden handles) and their sense of self he told me, was remarkable.

My husband is an admirer of 'Cosmic Nursing' and tried to hold onto a lot of the philosophy behind the writings - that people need to have exhilaration, to feel emotion and to be moved by life even when in the deep deep throes of Dementia. It became increasingly hard to balance his principles with the demands of the organisation. We have both now left Psychiatry because MH services in our part of England are in a state of collapse.

What I am trying to say is that I am shocked that the bringing in of photographs of the person at a younger age is being mooted within the care of the older person as something 'new'. I am also shocked that so many health care professionals seem to need these prompts to 'see' their patients. When you consider that RMN training focuses so much on the personhood of patients/clients and uses Nursing Models that reflect this (Peplau, Kings), this is even more shocking.

I suspect that as the 'Baby Boomer' generation starts to become increasingly affected by these organic conditions we will see more research, more money for research and greater activism regarding the appalling state of Dementia and Older Persons Care.

Thank you for writing such a lovely book Sally. I watched your BBC Breakfast interview and it was deeply moving to see the memories you have of your Mother pouring out.

Quinteszilla Wed 29-Jan-14 13:39:39

Good evening, and thanks for coming.

My mum is 78. She has been in a care home with Levy Body Dementia for 3 years. She has also been taking Hydroxy Urea along with aspirin for a cancer in her bone marrow since 1996, without it her blood thickens and clots.

I have two questions if you dont mind.

1. My maternal grandmother most likely had the same type of Dementia as my mum. Uncle 1 died from Parkinson. Uncle 2 has Parkinson. Uncle 3 has Dementia (but it has progressed much slower and without psychosis like my mum). Out of 7 siblings there are only 3 that are so far without any signs of Dementia/Parkinsons, out of this one 82 year old, and two in their sixties so still young. Can you please point me in direction of good and recent research relative to the clusters of Parkinson - Levy Body and Dementia in families in relation to hereditary illnesses? I am worried for myself and my children.

2. My mums doctor has stopped all her dementia related medication to allow the illness to follow its natural course, and we have seen a sharp decline in her. The next step is a passive euthanasia by stopping her cancer medication. I am worried about this because it it so unpredictable, what if she gets a stroke, and end up in more pain and confusion than now? Is there any research, literature that could put my mind at rest with this?

MommyVan Wed 29-Jan-14 14:07:07

Fantastic to see this topic featured on mumsnet, tragic that there is clearly a need for it.

My mother has vascular dementia and is now in a care home, my father having died some years ago. In the early days of trying to get a diagnosis, DSis and myself had young families, jobs and didnt live locally. Obtaining access to details of medical appointments (DM would hide the letters) never mind getting her there, was incredibly challenging.

While I can see a need to protect patient data, are there any changes GPs and hospitals can make to ensure relatives can access appointment details as this would help speed up diagnosis and early treatment, given the latter seems especially crucial in the case of dementia?

We sorted out a POA during this time but even then it was hard to get HCPs to talk to us.

Chlorinella Wed 29-Jan-14 14:12:41

My father (79 ) had been in hospital for the last 8 weeks , ( after he lost his sense of balance and couldn't stand )
He's been diagnosed with dementia before this , and now it appears to be Lewis Bodie (not siure how to spell ) dementia
He's waiting for the paperwork for funding a nursing home place .

My question ( selfish ) ... As both his parents had dementia , is there a way I can avoid going along the same way , or is it not an in the family condition ?

How can I get help for my DF (64) who is in serious decline. It started a few years ago with slight memory loss but has now progressed to forgetting names and things he has just done. He regularly phones me to tell me about somthing that he has just phoned me about half an hour earlier. It has got so bad that his employers phoned my mum as they have noticed this too.

DM has nursed dementia patients for over 40 years and is sure he has vascular dementia but the GP refuses to discuss it with her as DF won't give permission. Surely it's not breaking patient confidentially to just listen to DM? She' s not interested in hearing the details of what DF has said, just wants the GP to get an accurate picture of what is going on. DF gets so frustrated but won't admit it's a problem. He says we are making it up!

Reading this thread with interest. My 85 year old mother was 'diagnosed' with 'Mild Cognitive Impairment' at the Memory Clinic last week. a CAT scan revealed changes 'in line with Vascular Dementia' - her cognitive tests show her memory is worse than average for her age but not severe enough (yet) for a formal dementia diagnosis.

DH, DS and I live with my mum. She has her own living rooms and kitchen (it's a big house) and is 'independent' in that she does her own cooking and laundry, pays the utilities bills and can manage her own personal care, but we do a lot of her shopping and manage the practical aspects of running a household. Her short term memory is pretty bad and she repeats herself a lot. She avoids social contact - even with us - because she loses the drift of conversations. She likes to take herself into town once a week in a taxi for a spot of shopping and a coffee, but invariably loses her shopping lists and comes home with tons of food she doesn't need. Our freezer is jammed with her food! She seems quite happy in her own little bubble though watching TV and re-reading her Georgette Heyers. She is also much more mellow and less controlling than she was even 10 years ago (thank God).

I've also noticed a loss of cognitive function, she can't manage her own tax affairs any more or understand the difference between a statement and a bill and sometimes ends up paying for things twice. Figurework has become almost impossible for her. I'm trying to persuade her to let us take over some of the household admin, but she forgets how bad her memory is and the awful pickle she got into last month with the gas bill hmm She also forgets just how much DH and I do for her, so is in happy denial about her memory loss. We have had lots of near disasters with food burning, pans boiling dry, back door being left unlocked at night (she is nocturnal) so we now have lots of safety devices, checks and procedures in place (which she has forgotten about and is now unaware of) which enable her to lead a 'normal' life.

Huitre Wed 29-Jan-14 16:52:23

* She is also much more mellow and less controlling than she was even 10 years ago (thank God).*

Haha! This is how I feel about my mother. She's still bloody difficult but definitely getting mellower as time goes on and she gets less with it.

prettybird Wed 29-Jan-14 18:03:54

My mother had rapid onset fronto-temporal dementia brought on by a head injury sad. What was dreadful about watching her decline was that she didn't lose her memories, she just lost her character sad.

She died 2 years after diagnosis (and 5 years after her cycling accident from which she'd initially made a c.80% recovery), age 71. sad

Should more be done to educate people that there are different forms of dementia and that Alzheimer's is just one manifestation of it, albeit the most common one?

SpringyReframed Wed 29-Jan-14 19:02:54

Hi, my dad is 88 and we lost my Mum four months ago. He is doing very well in the circumstances and living on his own in sheltered housing but his memory is getting increasingly bad. It appears to be very much short term memory loss and pretty specifically related to events and appointments. He does not repeat himself in conversation, can watch a new and complex film and follow the plot etc but even with the help of a diary never knows when the nurse comes to dress his ulcers etc. He now panics about not remembering and loses things all the time. My question is - is there any point in seeing his doctor about this? It distresses him to admit his problem even though I explain to him regularly that he needs to "manage" it and he does agree. is to be expected at 88?

Waswondering Wed 29-Jan-14 19:49:21

Nothing to add ... Sally, I loved your "family life" book, devoured when my first born, now 10, was brand new. My parents are now, reading between the lines, where yours were then. Retired, lively, doting and involved. I will read this with interest. Thank you for writing this.

RachelMumsnet (MNHQ) Wed 29-Jan-14 19:58:27

We're delighted that Bahbak and Sally are with us at Mumsnet HQ and ready to start the webchat. They'll aim to get through as many questions as possible over the next hour.

SallyMagnusson Wed 29-Jan-14 20:00:25

Hi everyone, Lovely to be here. It's great to be talking about all this. So important. It's why I wrote Where Memories Go - because we must talk and share. It's been said, "We read so as not to feel alone". That's why I wrote. Look forward to chatting.

DrBahbakMiremadi Wed 29-Jan-14 20:00:39

Good evening Mumsnetters. Here with our Medical Director, Dr Nori Graham. Very happy to be with you tonight- will do our best to answer as many questions as possible.

SallyMagnusson Wed 29-Jan-14 20:01:53

Waswondering

Nothing to add ... Sally, I loved your "family life" book, devoured when my first born, now 10, was brand new. My parents are now, reading between the lines, where yours were then. Retired, lively, doting and involved. I will read this with interest. Thank you for writing this.

Pleasure. Hope you enjoy.

SallyMagnusson Wed 29-Jan-14 20:02:39

prettybird

My mother had rapid onset fronto-temporal dementia brought on by a head injury sad. What was dreadful about watching her decline was that she didn't lose her memories, she just lost her character sad.

She died 2 years after diagnosis (and 5 years after her cycling accident from which she'd initially made a c.80% recovery), age 71. sad

Should more be done to educate people that there are different forms of dementia and that Alzheimer's is just one manifestation of it, albeit the most common one?

I'm hoping my book will do a bit to educate people about dementia generally. My mother had mixed dementia, Alzheimer's and vascular dementia. There's a lot more information out there about Alzheimer's because that's where the research focus has been so far, but the more we can educate people about all forms of dementia the better.

SallyMagnusson Wed 29-Jan-14 20:06:32

Mignonette

Good evening to the both of you - Oh how needed this web chat is.

My Husband was a former Dementia Ward Charge Nurse and was one of the first to research how modifying the environment could affect the behaviour and emotions of patients on the unit. This was back in the 80's before Kitwood et al nd when Dementia care was even more of a Cinderella service.

He encouraged the bringing in of photographs and the clothing/personal possessions that a patients identity was rooted within. He had a gardening club and encouraged families to bring in the garden tools that belonged to the patient. Seeing the connections made between what they held in their hands (time and work worn wooden handles) and their sense of self he told me, was remarkable.

My husband is an admirer of 'Cosmic Nursing' and tried to hold onto a lot of the philosophy behind the writings - that people need to have exhilaration, to feel emotion and to be moved by life even when in the deep deep throes of Dementia. It became increasingly hard to balance his principles with the demands of the organisation. We have both now left Psychiatry because MH services in our part of England are in a state of collapse.

What I am trying to say is that I am shocked that the bringing in of photographs of the person at a younger age is being mooted within the care of the older person as something 'new'. I am also shocked that so many health care professionals seem to need these prompts to 'see' their patients. When you consider that RMN training focuses so much on the personhood of patients/clients and uses Nursing Models that reflect this (Peplau, Kings), this is even more shocking.

I suspect that as the 'Baby Boomer' generation starts to become increasingly affected by these organic conditions we will see more research, more money for research and greater activism regarding the appalling state of Dementia and Older Persons Care.

Thank you for writing such a lovely book Sally. I watched your BBC Breakfast interview and it was deeply moving to see the memories you have of your Mother pouring out.

Thank you so much. Yes, it's awful that that bringing in the photos is being mooted as something new - but thank goodness it's at least being done. People's individuality and the richness of their lives lived need to be cherished.

DrBahbakMiremadi Wed 29-Jan-14 20:07:04

2ofstedsin24weeksistakingthep

How can I get help for my DF (64) who is in serious decline. It started a few years ago with slight memory loss but has now progressed to forgetting names and things he has just done. He regularly phones me to tell me about somthing that he has just phoned me about half an hour earlier. It has got so bad that his employers phoned my mum as they have noticed this too.

DM has nursed dementia patients for over 40 years and is sure he has vascular dementia but the GP refuses to discuss it with her as DF won't give permission. Surely it's not breaking patient confidentially to just listen to DM? She' s not interested in hearing the details of what DF has said, just wants the GP to get an accurate picture of what is going on. DF gets so frustrated but won't admit it's a problem. He says we are making it up!

Hi, the GP should be open to hearing your side of the story- I do not think you are breaking patient confidentiality by having the GP listen to you- no information on your father need be shared by them. You could perhaps ask your GP to address the issue in the context of general health at the next visit. It sounds like he definitely needs an assessment.

Cwtchbach Wed 29-Jan-14 20:07:04

I'm so glad to see this tonight! I was actually online researching dementia myself and popped over for my nightly mumsnet check!
Anyway, my Great Grandmother and then my Grandmother both suffered with dementia - it was worse with my Gran as she just saw my Mum as someone evil and said awful things to her, it was really hard. As a consequence I have decided to work as carer for those with dementia, I am also training in holistic therapies.
My question is: Are there any studies which back up the claim that reflexology is beneficial to those with dementia? - do you have any thoughts on this?
Many thanks
Cwtch

CMOTDibbler Wed 29-Jan-14 20:07:09

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?

prettybird Wed 29-Jan-14 20:08:23

The "good" news about my mum's death is that because hers was a well-documented brain, it will help towards the research that to work out how to stop the healing process into a destructive process in a small proportion of people smile ......of interest to rugby players, boxers, cyclists, essentially anyone who's suffered a head injury.

Hi. I used to look after a lady with dementia and previous to that had helped with a lady who had dementia and was "a wanderer" Do you find that different types of dementia cause this?

DrBahbakMiremadi Wed 29-Jan-14 20:15:20

caketinrosie

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

Hello. There is a great deal of research going on at the moment. This was a focal point at the recent G8 conference. They set the challenge of a treatment/cure by 2025. The will is there and much going on to promote a collaborative effort. Difficult to say as nothing on the immediate horizon and we are not dealing with a single disease. But progress is being made- so we should remain optimistic as medical research can suddenly take a unpredicted leap forward. Meanwhile we are getting better at knowing how to support people with the condition to maintain a good quality of life.

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