Exactly my point, Tina.
It is best to read any book before judging it on a brief snippet on TV or in the press.
And the Kitwood approach has a lot going for it too, but one size doesn't fit all.
Thanks, Tina.
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Specal
- Thread starter Nutty Nan
- Start date
Exactly my point, Tina.
It is best to read any book before judging it on a brief snippet on TV or in the press.
And the Kitwood approach has a lot going for it too, but one size doesn't fit all.
Thanks, Tina.
.
Hi,
I have read the book and had mixed views. There was some useful thoughts but it also seemed to me to have extremely unrealistic expectations of the carer and made assumptions about the extra (and ideal) assistance they could call on both from other friends and family or paid carers.
The ask no questions rule was one I found useful to see in print. I had sort of worked out that asking questions makes Mum anxious but good to see it in print. I read the book a while ago but I think there was also advice about looking ahead and acceptance of a trigger which would indicate that a care home needed to be considered. Again I thought this was very sensible advice but also felt having dealt with 10 years of the reality of Alzheimers in a relative that this was a bit idealistic. Easy to write as a theory but much harder to do in practice.
Overall I felt it was all presented a bit to much through rose tinted spectacles with none of the unpredictability, complications and messiness of real life and this disease but it does contribute ideas for those affected.
I have read the book and had mixed views. There was some useful thoughts but it also seemed to me to have extremely unrealistic expectations of the carer and made assumptions about the extra (and ideal) assistance they could call on both from other friends and family or paid carers.
The ask no questions rule was one I found useful to see in print. I had sort of worked out that asking questions makes Mum anxious but good to see it in print. I read the book a while ago but I think there was also advice about looking ahead and acceptance of a trigger which would indicate that a care home needed to be considered. Again I thought this was very sensible advice but also felt having dealt with 10 years of the reality of Alzheimers in a relative that this was a bit idealistic. Easy to write as a theory but much harder to do in practice.
Overall I felt it was all presented a bit to much through rose tinted spectacles with none of the unpredictability, complications and messiness of real life and this disease but it does contribute ideas for those affected.
Had the opportunity to speak with Penny Garner today. Glad to say the initial suspicions of Specal aroused whilst reading "Contented Dementia" were mostly eradicated. Did raise the point of concern of the book being the first point of contact for many when it comes to Specal. Offered the opinion of it being "RELENTLESSLY CHIRPY" and perhaps misrepresenting the predominance of the Primary Theme to what seemed the exclusion of all else and was mightily relieved on Penny's answers. She remarked that she seems to have more problems with the book coming from "professionals" and not family carers. I made the point that if I had been a family member reading the book I wouldn't have came to the course as it would have put me off with what I found to be it's occasionally reductive and dogmatic manner. A family member would not follow up the reading of the book with an attendance at the course. I feel sure there is room for another book, perhaps written by Penny herself, for care home staff...or nursing professionals. So depite my initial anger related to the overall tone of Oliver James' book which remains, I now see that it is not the accurate representation of Specal which is required , but am overwhelmingly grateful to find that the system itself IS what I've been hoping for.
Contented Dementia
Thanks for your update, apemanb, after meeting with Penny Garner.
I'm glad it turned out positive for you - and I had a feeling it would do!
The book was condemned by many people even before they had read it, based only on reading a short article in the press. So well done you, for having made the effort to read the book before feeling 'uncomfortable' with parts of it.
So was I!
I didn't particularly like the style of writing, but ... hey ho, that's the right of the author to write his/her book as he/she chooses. The message is more important than the messenger. And you have now found that message. And it's a fairly constructive message, rather than a negatively destructive one.
Glad anyway that you found positive outcomes from your meeting with the Specal expert.
Thanks for your update.
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Thanks for your update, apemanb, after meeting with Penny Garner.
I'm glad it turned out positive for you - and I had a feeling it would do!
The book was condemned by many people even before they had read it, based only on reading a short article in the press. So well done you, for having made the effort to read the book before feeling 'uncomfortable' with parts of it.
So was I!
I didn't particularly like the style of writing, but ... hey ho, that's the right of the author to write his/her book as he/she chooses. The message is more important than the messenger. And you have now found that message. And it's a fairly constructive message, rather than a negatively destructive one.
Glad anyway that you found positive outcomes from your meeting with the Specal expert.
Thanks for your update.
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I read the book and the carers and I followed some of the suggestions in it. I believe we were very lucky to have the same, dedicated carers (Direct Payments gives you the freedom to choose your carer) who borrowed the book, read it and were happy to fit in with the ideas. We did use certain stock phrases to calm my mother's agitation and we did identify a primary theme. I think it did help us maintain an atmosphere of calm. No doubt if I'd found TP earlier I'd have picked up tips here too. Agree, it's down to personal circumstances.
Qu - Primary Theme ???
In a nutshell - what is a Primary Theme? Could someone explain?
(I'm new to TP and AZ and I find all ideas worth considering... from those at the chalk face equally the so-called professonals. Thanks!)
In a nutshell - what is a Primary Theme? Could someone explain?
(I'm new to TP and AZ and I find all ideas worth considering... from those at the chalk face equally the so-called professonals. Thanks!)
Training courses
I am caring for a person with dementia, and have been recommended the book "Contented Dementia" and also to take the course run by SPECAL. Reading the book is now a pre-requisite of taking a SPECAL course. I am wondering if anyone out there has taken the course, and what there impressions were. Is there any other course available that I could take? I've read the posts so far - it's great to know that there are others out there to talk to about caring for dementia sufferers.
I am caring for a person with dementia, and have been recommended the book "Contented Dementia" and also to take the course run by SPECAL. Reading the book is now a pre-requisite of taking a SPECAL course. I am wondering if anyone out there has taken the course, and what there impressions were. Is there any other course available that I could take? I've read the posts so far - it's great to know that there are others out there to talk to about caring for dementia sufferers.
I believe the AS has its own courses.
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1007
You might also like to have a look at this before making up your mind.
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1087&categoryID=200167
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1007
You might also like to have a look at this before making up your mind.
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1087&categoryID=200167
St. Johns run free courses which include dementia awareness, even though the dementia day is only 4 hours it is excellent for "beginners". It is a 4 weeks course and also covers fall prevention, first aid and medication. I enjoyed the course but being several years down the line found it could have been more in depth as far as each session is concerned. I did learn lots though. Hope they run one in your area.
Best wishes Winnie
Best wishes Winnie
Replying to Bobo - I went on the Specal course last April and it has transformed my own ability to care for my mother. It helped me to understand the impact of the disease on her, to understand why she behaves in the way that she does, and how I can best respond. I would say the course has benefitted me more than mum. I have more strategies and understanding, and consequently less worries. I never argue with her now, and only ask necessary questions, I spend more time engaging her in activities I know she has confidence in (e.g. she is still a wizard draughts player) and I have learned to let a lot of issues we might disagree on pass. We can't change the situation for the person, but we can help ourselves as carers - I would heartily recommend the course.
PAL Instrument
I am in the process of reading Contented Dementia about SPECAL. It all does sound 'rather lovely' if you can get your relative into the right zone, but as many have discussed/ experienced... is that so simple?! Interesting, however, and as I'm early in the journey I'm open to all perspectives and ideas.
So, I will now ask: does anyone know about the PAL Instrument... and much about Jackie Poole and her 'person-centred' care philosophies? I have the opportunity to move my Mum into a CH with 'Christian values', a Grade 3 (excellent) rating and they have bought into the Jackie Poole approaches. Is it a similar thing to SPECAL?
(Personally I hate all the labels and acronyms - I work in education where it's annoying too... but heh!)
I've worried constantly on this forum about my Mum's recurring eczeme in the CH, that I now believe may be due to stress and depression, and that there is no-one giving spiritual input despite the trauma of losing her vital 'prop', my Dad. I'm hopeful a more 'pro-active' 'person-centred' care environment would benefit her - any thoughts?
I am in the process of reading Contented Dementia about SPECAL. It all does sound 'rather lovely' if you can get your relative into the right zone, but as many have discussed/ experienced... is that so simple?! Interesting, however, and as I'm early in the journey I'm open to all perspectives and ideas.
So, I will now ask: does anyone know about the PAL Instrument... and much about Jackie Poole and her 'person-centred' care philosophies? I have the opportunity to move my Mum into a CH with 'Christian values', a Grade 3 (excellent) rating and they have bought into the Jackie Poole approaches. Is it a similar thing to SPECAL?
(Personally I hate all the labels and acronyms - I work in education where it's annoying too... but heh!) I've worried constantly on this forum about my Mum's recurring eczeme in the CH, that I now believe may be due to stress and depression, and that there is no-one giving spiritual input despite the trauma of losing her vital 'prop', my Dad. I'm hopeful a more 'pro-active' 'person-centred' care environment would benefit her - any thoughts?
SPECAL - my experience
My Dad had Lewy Body disease and he suffered the full symptoms of Alzheimer's plus Parkinsonian symptoms plus vivid hallucinations.
I became his full time carer after my Mum died in an accident, not long after he was diagnosed.
I was put in touch with SPECAL by a friend (who's husband also had Lewy Body and who, with SPECAL's help, managed to care successfully for her husband for many years) and I can honestly say that by using their techniques, Dad not only knew who he was but also who I was for the rest of his life. Yes, it was challenging, yes, it was tiring and yes, I did have to change my understanding of dementia and the way Dad now saw the world. But it worked and with SPECAL's help, after a year of caring, I successfully moved Dad to a nursing home where I visited 3 times a week, and where he thought I, my late Mother and his parents lived with him too.
It isn't and can never be an easy road, but it was made much easier for me and Dad with SPECALs guidance.
I have read this thread with interest and others which touch on the topic. I have read about people here having success with this method, even if they are sceptical to begin with. And I am saddened that every time this happens, this forum directs people to the AS statement about SPECAL.
We are all on the same side here and a non-invasive method that works should not be dismissed in such a hostile manner and I am saddened every time I see that link crop up. It is destructive at the time people are begging for constructive help.
My Dad had Lewy Body disease and he suffered the full symptoms of Alzheimer's plus Parkinsonian symptoms plus vivid hallucinations.
I became his full time carer after my Mum died in an accident, not long after he was diagnosed.
I was put in touch with SPECAL by a friend (who's husband also had Lewy Body and who, with SPECAL's help, managed to care successfully for her husband for many years) and I can honestly say that by using their techniques, Dad not only knew who he was but also who I was for the rest of his life. Yes, it was challenging, yes, it was tiring and yes, I did have to change my understanding of dementia and the way Dad now saw the world. But it worked and with SPECAL's help, after a year of caring, I successfully moved Dad to a nursing home where I visited 3 times a week, and where he thought I, my late Mother and his parents lived with him too.
It isn't and can never be an easy road, but it was made much easier for me and Dad with SPECALs guidance.
I have read this thread with interest and others which touch on the topic. I have read about people here having success with this method, even if they are sceptical to begin with. And I am saddened that every time this happens, this forum directs people to the AS statement about SPECAL.
We are all on the same side here and a non-invasive method that works should not be dismissed in such a hostile manner and I am saddened every time I see that link crop up. It is destructive at the time people are begging for constructive help.
It is always good to have both sides of the story. I agree with Kate that any time SPECAL is mentioned you are referred to the AS statement.
SPECAL’s statement on the ethics of its approach to dementia care:
http://www.specal.co.uk/how/statement.htm
SPECAL’s statement on the ethics of its approach to dementia care:
http://www.specal.co.uk/how/statement.htm
I came across Contented Dementia in an airport bookshop in December 2009 and bought it. Thanks to the first few pages of that book, my father's still able to live independently. The book is a support. It recognises that the family carer is part of the professional team, and does not sideline or disrepect their opinion. I was givin a bundle of books when my father was first diagnosed. He had been 87 and had a minor stroke. He had always been extremely healthy. He was immmediately prescribed simvastatin. He was not given any rehabiliation in terms of his stroke, i.e speech therapy, help with communication, even how to build a communication passport. Nothing. The carer was not given any help either. I have attended the SPECAL Training course, attended Edcon workshops and various conferences. I have also listened to the Care Commission Chief Executive and my own Home Care Team. Just wondered when the carer and ther person who is disabled may be invited for their opinion and more importantly have them considered. We are free. My father had ongoing assessments, invasion into his home with no explanation of what help they would provide. The NHS is under resourced so why is this still continuing? Anyway, please do not dismiss SPECAL, its not a drug. Its a tool for helping to communicate and not coerce. I'm happy to share any tips which I have come across.
I'm happy to share any tips which I have come across.I too am halfway through reading 'Contented Dementia' but right from the start found it made sense!
Yes it can be a bit difficult to read at times and also repetitive, but there's nothing wrong in that as long as the message gets through.
Readers should not be too critical of Oliver James book - understanding Dementia is a steep learning curve for all carers and the more we can learn, the happier our relative will be.
Personally, it was just the kind of hope, support and reassurance I was looking for. Mum has only been given an initial diagnosis of Dementia as we are still waiting a CT Scan for confirmation, but it is in the early stages where we can still ask questions as long as they are not too 'invasive.'
I feel by reading this book we can keep one step ahead in our care for Mum as her Dementia progresses.
I am looking forward to attending a SPECAL session!
Yes it can be a bit difficult to read at times and also repetitive, but there's nothing wrong in that as long as the message gets through.
Readers should not be too critical of Oliver James book - understanding Dementia is a steep learning curve for all carers and the more we can learn, the happier our relative will be.
Personally, it was just the kind of hope, support and reassurance I was looking for. Mum has only been given an initial diagnosis of Dementia as we are still waiting a CT Scan for confirmation, but it is in the early stages where we can still ask questions as long as they are not too 'invasive.'
I feel by reading this book we can keep one step ahead in our care for Mum as her Dementia progresses.
I am looking forward to attending a SPECAL session!
Welcome to Talking Point.
I would agree the more information we have the better. I do hope you'll stick around on the forum: unfortunately many (but not all) of the people who promote this approach make one post supporting it and are never seen again. It makes one, well, wonder.
I would agree the more information we have the better. I do hope you'll stick around on the forum: unfortunately many (but not all
) of the people who promote this approach make one post supporting it and are never seen again. It makes one, well, wonder.
The only people that really helped me have been the Alzheimers Society and the people at my local branch - they were the ones that really understood what all the family was going through and really understood my Mum. I frankly did not have time to read any books I was up to my eyeballs with caring as I am sure most others are.
I think that you have to experience it to understand it either you have this disease or you are caring for someone that has it - there are no other "experts". I agree with Jennifer - as for anybody actually saying they would want to have dementia if they had a choice of a serious illness - I really am lost for words (which is quite unusual for me).
I think that you have to experience it to understand it either you have this disease or you are caring for someone that has it - there are no other "experts". I agree with Jennifer - as for anybody actually saying they would want to have dementia if they had a choice of a serious illness - I really am lost for words (which is quite unusual for me).
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I read "Contented Dementia" and both my Mum's PA (and any deputy) and I followed it. We had certain sentences we would all use to calm her so there was continuity in her care. We didn't ask questions but used sentences like "Maybe it's time for us to have a cup of tea". We tried to give her a feeling of self-worth and a feel that she was in control of her personal life. We never contradicted, but went along with everything... e.g. (excerpt from our diary) "Why is the fruit bowl in the wrong place?" (it was in the place it always was)......"Well spotted, I moved it!" !!
We also identified a primary theme (something my Mum had loved doing in her past) and also identified her "finest hour" and we talked about those things lots. We also talked about her achievements. And we never left the room without explaining that we were going and why.
Personally, the book was a godsend for us and got us through very difficult times (I had not discovered TP at that time) , and I have to repeat again, we were so lucky to have such a wonderful PA that she also read the book and followed the notes we kept at the front of Mum's diary. (I'm beginning to think I should publish the diary...)
I highly recommend it.
We also identified a primary theme (something my Mum had loved doing in her past) and also identified her "finest hour" and we talked about those things lots. We also talked about her achievements. And we never left the room without explaining that we were going and why.
Personally, the book was a godsend for us and got us through very difficult times (I had not discovered TP at that time) , and I have to repeat again, we were so lucky to have such a wonderful PA that she also read the book and followed the notes we kept at the front of Mum's diary. (I'm beginning to think I should publish the diary...)
I highly recommend it.
Welcome to Talking Point.
I would agree the more information we have the better. I do hope you'll stick around on the forum: unfortunately many (but not all
Just seen this post, Jennifer. I'm curious. What does it 'make you wonder'?
Personally, I find the AS attitude to SPECAL so depressing, that I'd rather spend my time helping others who ARE open to SPECAL's help elsewhere than posting here!
That statement you direct people seems quite hysterical in tone - as I said in my last post, we're all supposed to be on the same side here: that of helping people with dementia and their carers.
