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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.

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?

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?

ishouldcocoa 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?

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?

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.

LottieJenkins Wed 29-Jan-14 20:08:25

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.

SallyMagnusson Wed 29-Jan-14 20:15:56

whataboutbob

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!

All any of us can do is our best, within the circumstances in which we find ourselves. Working out the best for someone we love with dementia, while also keeping faithful to the important responsibilities to children, husbands, work etc is extraordinarily difficult. Whatever we decide we nearly always end up feeling guilty. I did, even though my sisters and I did manage to keep our darling mum in her own home to the end - because there is always something you feel you could do better. Always. You have to work out what can practically and reasonably be done and then keep loving, keep connected, keep giving your dad lots of attention and interaction and social possibility and music (have a look at my charity Playlist for Life for ideas on this) - wherever he ends up living. Do it out of love and it IS the right thing.

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?

SallyMagnusson Wed 29-Jan-14 20:20:50

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.

DrBahbakMiremadi Wed 29-Jan-14 20:26:03

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.

CMOTDibbler Wed 29-Jan-14 20:26:05

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

SallyMagnusson Wed 29-Jan-14 20:30:21

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.

DrBahbakMiremadi Wed 29-Jan-14 20:32:00

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.

whataboutbob Wed 29-Jan-14 20:32:40

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.

SallyMagnusson Wed 29-Jan-14 20:33:23

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?

DrBahbakMiremadi Wed 29-Jan-14 20:33:59

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!

prettybird Wed 29-Jan-14 20:35:50

CMOTdribbler - my mum also had fronto-temporal dementia and like yours, nothing seemed to give her pleasure any more. sad. 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.

WeeSleekit Wed 29-Jan-14 20:37:18

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?

DrBahbakMiremadi Wed 29-Jan-14 20:38:24

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.

SallyMagnusson Wed 29-Jan-14 20:40:51

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.

CMOTDibbler Wed 29-Jan-14 20:41:17

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.

prettybird Wed 29-Jan-14 20:44:01

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

SallyMagnusson Wed 29-Jan-14 20:44:10

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.

prettybird Wed 29-Jan-14 20:48:33

(....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 sad)

Tensmumym Wed 29-Jan-14 20:48:38

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.

SallyMagnusson Wed 29-Jan-14 20:50:36

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.

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.

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.

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.

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.

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.

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'.

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!

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.

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.

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?

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.

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.

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 21:15:58

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.

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 21:18:48

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.

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

Thank you very much Bahbak.

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

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?

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.

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

Thank you both very much.

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.

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.

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 21:39:35

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

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