Contented Dementia Book and Website

[zigandzag]

Hi all - I'm in the middle of reading this book - "Contended Dementia" and in it they refer to the "The Contended Dementia Trust" and the "SPECAL method of communication" as per the link:- http://www.contenteddementiatrust.org/

I just wondered if anybody had attended one of their courses and what they thought of them?

Thanks

 

[rajahh]

I read the book and realised that it was not for me. The book talks about a core team well my core teams consists of me and I knew I could not maintain that level of "living in the patients world".

Jeannette

 

[Barney22]

I also read this book and whilst I thought it might well work in some parts for our family circumstances there are a number of family members involved in the care of our parent (including in laws) and I think all would have to sign up to this process otherwise it simply wouldn't work. As with all families we have the full range of emotions attached to the caring e.g. Non acceptance of this disease, seeing our parent as 'getting better' and simply not seeing how bad things really are......

I think it would lead to all sorts of problems unless all were on board with this process.

I can see how it may well work for a smaller number but for one Carer it would be just too much to be in the world of the dementia sufferer 24/7

 

[bemused1]

I'm afraid I found this book so difficult to accept that I couldn't even finish it. All I can say is that I think there would be two cases of dementia if I were to live in my husbands world and he is only in the early stages. Maybe it will work for some but its definitely not for me

 

[Witzend]

I read the book and realised that it was not for me. The book talks about a core team well my core teams consists of me and I knew I could not maintain that level of "living in the patients world".

Jeannette

Yes - I think you'd need a 'core team' of carers who look like nice, kind humans but are actually robots who never get exhausted, stressed, irritated, exasperated, up to ***** here with it all.

Having said that I think it is probably helpful for anyone new to dementia, to help them understand how to cope (e.g. not wasting breath and energy arguing or correcting) but the counsel of perfection IMO is just going to make a lot of people feel inadequate and guilty if they aren't able to provide the ideal (idealistic?) care.

 

[rajahh]

It is good to see others have had difficulty with this book. It was oneof the first I read when my husband finally got his diagnosis, and yes I felt totally inadequate.

However the lessons about not wasting breath and energy are good ones, and I do try to follow them as far as I am able.



Jeannette

 

[AlsoConfused]

If it's the book I remember, I thought it was a loving description of what one daughter had been able to do for her Mum. I thought most of the lessons aren't transferable to other carers' situations (some are, of course).

Daughter and Mum were both comfortably off financially, easily able to pay for care and the daughter had no competing calls on her time and attention. The Mum was easy to deal with. The other individuals the author mentions were all in care homes where the basics of care were being managed by teams of paid carers, not just one overstressed individual.

The most difficult parts of our family experience with Mum's dementia have been when we've needed her to fit in with "real world" timetables and requirements - eg she has to be ready to leave the house by 9.00am because there's a non-movable and very important hospital appointment to attend in another town at 11.00am. Because time has no meaning for her, she's unable to evaluate what's important and is still as ungovernable as the rest of the family, Mum can be extremely difficult.

I felt the book didn't touch on our experience.

 

[Padraig]

This post has some impact on my. As I'm in the process of writing the story of our experiences with Alzheimer's. I'm hoping it doesn't make people feel they failed. My main reason for writing is to tell the story from a different perspective.
When my wife was diagnosed we lived in a remote area and I did not have a computer. Most of the information I learned from so called experts whose answers for problems we encountered was medication. Not until I chose to remove my wife from a NH did I purchase a computer; went on line and sought anyone who might be in the same boat as myself, i. e. decided to care for a loved one at home on their own.
It was a US web site and all the advice was; it's not possible, especially when the patient has lost the use of limbs and speech. When I mentioned that I was going it alone I was invited to tell our story as it unfolded. Contrary to the predictions my wife survived almost five years. It is my wish that some of the thing I discovered may be of use to others.

 

[snedds57]

I read this book last year, and I think it's a bit like one of those baby books people used to read when pregnant with their first child, a lot of is out of date, not palatable (almost cheesy) and I could imagine lot of people wouldn't relate to it very well , esp the style its written in. However...if you unpack all the extraneous stuff, the general message is actually ok. It was generally a bit OTT for me! For a general book on understanding dementia, Tam Cummings book "Untangling Dementia" is far more down to earth and quite concise - useful for carers and professionals alike.

Linda

 

[JPG1]

post deleted by me as it is no longer relevant

 

[stanleypj]

Like others, I struggled with this book. Of course, we all want our loved ones to be contented and there are some useful tips. But the dogmatic tone is very off-putting. It appears to suggest that everyone, as soon as they are diagnosed, should be encouraged to regard themselves as someone who should abdicate all responsibility for their own life: 'leave all the work to someone else'. Similarly carers are told: 'Never ask questions.' and 'Always agree with everything they say.'

Whatever happened to 'everyone's different' and the concept of personhood?

I find such certainty chilling.

 

[robinb]

The SPECAL method

I have attended the course with other members of my family.We did find it very useful and although my mother in law no longer lives with us we are all able to continue the technique and it has helped with the transition to her current care home. The care home were pleased that we were able to work with them on Mother in Laws care.All round continuing success and i would recommend the course.

 

[yorkieinlincs]

I, too, started reading this book, and have also attended a course in 'dealing with dementia', and two things are always assumed which, probably, none of us have; infinite time and infinite patience!!

 

[DazeInOurLives]

Don't dismiss this method

Both my grandmothers and parents had alzheimers. I am a palliative care nurse, my career on hold for some years whilst I have cared for my parents and my own family.

I am passionate about ethical, respectful and personalised care and have found this method outstrips any other I have seen both personally and professionally in deeply personalising care for people with dementia.

In my opinion, the book does not stand alone terribly well. The course offered by the trust brings the method alive and using the method more effectively with Mum has helped her, her carer and me beyond all measure.

Mum is not someone to be bossed around or have her sense of autonomy compromised. She is able to answer direct questions, but the process of answering them unsettles her (admittedly sometimes at a low level but often to a significant degree). Even a simple question brings Mum uncertainty and fear and it is much kinder to her to avoid all questions. Dad was the same.

We have no problem eliciting Mum's preferences and choices simply by rephrasing the questions so that they are no longer questions. It is just about practice. There is nothing you cannot find out if you know how to do it.

I am now able to phone Mum in the mornings and find out whether or not she has had her breakfast. Instead of asking her outright (to which she then falters and wonders...and then bluffs) - I say things like "I'm going to have my breakfast now" or "Eight o'Clock - breakfast time". To which she will confidently reply with the current state of affairs for her - including whether she has had her breakfast yet. On the occasions that there have been guests staying there, I have been able to ascertain the reliability of her replies and they are indeed reliable.

Contradicting anyone with dementia at best is belittling, at worst it is like pouring petrol on a bonfire.

I could go on for hours about how using this method has brought Mum and us all some inner peace and confidence in how to help her. It is far from easy. She is really quite difficult to support, but this book and method truly has helped us enable her to remain (genuinely) in charge of events where this is safely possible and it has given us many many practical tools to fall back on when times are tough.

I truly don't understand why it is not massively popular...I am very aware of how to care for someone in an honest and respectful way and have not found that I have had to do anything that would feel ethically dubious or even uncomfortable if I was caring for Mum in a professional capacity.

Please don't dismiss it. It is not, and never will be a one-size-fits-all method. It is deeply, deeply personal and powerful way to help a person with mid to later stages of dementia.

SBA

 

[jean3]

Just read the comments - amazed!

Amazed because this book was the turning point for me and my mum! It must have been 3 years ago. I live a long was from her and only manage one w/e a month but I manage the carers I've found to cover her waking hours (paid for through Direct Payments) I bought 2 copies of the book and asked each of them to read it and apply the method. From being aggressive even violent and difficult to manage my 94 year old mum is still at home, settled, very happy and loving! "a sweetie" "amazing lady" "a pleasure to be with" say her carers and day centre staff. If I had to choose just one of the suggested techniques it would be the application of the traffic lights. Keeping her on a green mood, being warned by an amber and avoiding a red at any cost is the key.
I must admit helped nowadays with her memantine medication recommended by people on this forum.

 

[jean3]

Very impressive comment

You are just the type of nurse I'd like for my mum!

Both my grandmothers and parents had alzheimers. I am a palliative care nurse, my career on hold for some years whilst I have cared for my parents and my own family.

I am passionate about ethical, respectful and personalised care and have found this method outstrips any other I have seen both personally and professionally in deeply personalising care for people with dementia.

In my opinion, the book does not stand alone terribly well. The course offered by the trust brings the method alive and using the method more effectively with Mum has helped her, her carer and me beyond all measure.

Mum is not someone to be bossed around or have her sense of autonomy compromised. She is able to answer direct questions, but the process of answering them unsettles her (admittedly sometimes at a low level but often to a significant degree). Even a simple question brings Mum uncertainty and fear and it is much kinder to her to avoid all questions. Dad was the same.

We have no problem eliciting Mum's preferences and choices simply by rephrasing the questions so that they are no longer questions. It is just about practice. There is nothing you cannot find out if you know how to do it.

I am now able to phone Mum in the mornings and find out whether or not she has had her breakfast. Instead of asking her outright (to which she then falters and wonders...and then bluffs) - I say things like "I'm going to have my breakfast now" or "Eight o'Clock - breakfast time". To which she will confidently reply with the current state of affairs for her - including whether she has had her breakfast yet. On the occasions that there have been guests staying there, I have been able to ascertain the reliability of her replies and they are indeed reliable.

Contradicting anyone with dementia at best is belittling, at worst it is like pouring petrol on a bonfire.

I could go on for hours about how using this method has brought Mum and us all some inner peace and confidence in how to help her. It is far from easy. She is really quite difficult to support, but this book and method truly has helped us enable her to remain (genuinely) in charge of events where this is safely possible and it has given us many many practical tools to fall back on when times are tough.

I truly don't understand why it is not massively popular...I am very aware of how to care for someone in an honest and respectful way and have not found that I have had to do anything that would feel ethically dubious or even uncomfortable if I was caring for Mum in a professional capacity.

Please don't dismiss it. It is not, and never will be a one-size-fits-all method. It is deeply, deeply personal and powerful way to help a person with mid to later stages of dementia.

SBA

 

[ThameElks]

The Specal Method and Contented Dementia

I have been on the Specal courses and they saved our lives when we had to cope with my mother's Alzheimer's. Until I discovered The Contented Dementia Trust, no other organisation gave us any practical methods to help with the day to day challenges to look after my mother and to understand what was happening and a few basic rules helped us so much. It was well worth the effort and I would hope that everyone has the opportunity to at least know about the Specal method. The Trust are so helpful and understanding and will do their utmost to help you.

 

[jenniferpa]

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1087

 

[stanleypj]

Thanks for posting this link Jennifer. I agree with every word. This detailed criticism is very powerful because it starts with the expressed view of people with dementia. It's so much better than the previous dismissive quote on the subject which, as I recall, was from someone who was associated with another care home chain.

 

[Contrary Mary]

To me, the last paragraph of the AS statement says it all. It was no help in our situation.