I bought today my own book “Living well with dementia” at a bargain price from Primrose Hill Books

I got a bargain today.

I have been quite a good mood recently, getting ready for my book launch in Camden on the afternoon of February 15th, 2014. We’re all going out for dinner in Pizza Xpress later that evening, somewhere in Central London.

shibley rahman living well with dementia

I bought my own book ‘Living well with dementia’ from Primrose Hill Books for the very much discounted price of £16.99.

This is not because it was a soiled copy, or because I was the buyer.

It was because they had ordered it in especially from the wholesalers, and managed to sell it onto me a very much reduced price.

Receipt 2

Of course I am very grateful, as I think it’s important to support local independent booksellers in the community.

Here’s a good piece from last year on ‘five reasons to support your local indie bookseller‘.

Here are the full details of ‘Primrose Hill Books’. They’re on the main road which passes through Primrose Hill. This book is called Regents Park Road.

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Nonetheless, I appreciate that some people will prefer to use the bigger well known book retailers, especially if they do not time to browse or travel to such bookstores.

After a bit of haggling, we got Amazon this afternoon to reduce their delivery time from 9-11 days to fewer than 24 hours. This is of course a huge result for me. Their page on my book is here.

Book cover

The Blackwells Bookstore is normally a good place to find the book for immediate delivery, but not at the time of writing this blogpost. The book is currently out of stock, but I do know reliably they had a good stock once upon a time. Here is their page.

But Primrose Hill Books will always have a special place in my heart. I’ve bought books there I’d never have ordered on Amazon, for example, through browsing.

It’s run by Jessica and Marek (and Kelly is often there too). All three have an enclopaedic knowledge of current books, some well known, some not so well known.

Of course, it was a source of great pride to see my book there. I’ve published specialist textbooks, but not the type which would look in place in the bookshop above or any other high street bookseller.

Here’s Jess looking at the book.

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She said it was a good book, and we had a discussion of how long it had taken me to write (a year),  how this had become a real passion of mine to share this information and to dispel all the scientific misinformation about dementia, and how it was written in the style of a long blogpost but it actually contained a lot of interesting contemporaneous evidence and discussion.

It is of course a bit weird to see the book alongside classics such as Ben Goldacre’s “Bad Pharma: How medicine is broken, and how we can fix it” and Naomi Wolf’s “Vagina”. But hey ho.

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You can buy the book from the publishers’ website too.

Their is their official flier. You get 20% off if you use the promotional code ‘AUTHOR20′. You enter this code apparently just when you are completing the ‘checkout’ in this e-bookstore.

And finally, one of the people I genuinely admire the most is Tommy Whitelaw (please support Tommy at “@tommyNTour“).

You can read about Tommy’s campaign for giving carers ‘a voice’ on my blog here. His story continues to motivate me very much – and not just because he’s a Glaswegian like me!

Tommy is very honoured that his campaign and letters in Sally Magnusson’s Book “Where Memories go”.

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Hopefully the episode where Sally talks to Tommy in “Medical matters: caring for carers” will be made available on the BBC iplayer shortly.

And finally – here’s Sally’s book on the Hodder website.

All in it together, and all that.

My research survey on perceptions and image of dementia following the G8 dementia summit

This study can only take place subject to ethical approval from a local COREC. Whilst there is no wish to collect data apart from anonymously, and whilst we will ensure governance of the study for data collection, information given to participants, and whilst we will seek permission to take part (and consent), it’s imperative that a senior investigator on the team (not me) is accountable for the findings. This will be essential if we are later to publish any findings publicly in abstract form or beyond.

I am intrigued about personal reactions to the #G8dementia summit, regarding some perceptions and the image of dementia, and whether the summit addressed any of that.

I’m also interested in seeing whether the summit had a differential effect on those persons living with dementia, and those without (including carers).

There are 28 questions.

Some invite open-ended answers.

There’ll therefore be three groups:

Group A    Persons living with dementia

Group B   Carers

Group C   Not groups A or B

I’ll make three links to these 3 surveys available in time.

I’d be interested in any changes to the questions, or any additions to this list of questions. I will be also collecting very basic demographic data in my surveys. Please use the comments section below this post.

THE SURVEY

This survey is about your perceptions and image of the G8 Dementia Summit which took place in December 2013.

This survey is completely anonymous.

I’d be very grateful if you could answer as best as you can.

The questions have no right/wrong answers.

The survey is in three sections: Part A, B and C.

Thanks!

PART A

Questions 1 – 19

1. Did you see any of the news coverage on the television about the #G8dementia Conference last year?

Yes

No

2. Did you hear any of the news coverage on the radio about the #G8dementia Conference last year?

Yes

No

3. Did you read any of the news coverage on the internet about the #G8dementia Conference last year? This could include any references to the event in the social media, such as Facebook or Twitter.

Yes

No

4. Were you aware of a potential significance of dementia in the future?

Yes

No

5. Do you consider the response against dementia to be a ‘fight’?

Yes

No

6. Do you consider the numbers of people to be living with dementia to be a ‘explosion’ in the near future?

Yes

No

7. Do you consider yourself to be ‘shocked’ by dementia?

Yes

No

8. a) Do you think it’s right to compare dementia to HIV/AIDS?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

9. a) Do you think it’s right to compare dementia to cancer?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

10. a) Do you consider the response against dementia to be a ‘war’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

11. a) Do you consider the response against dementia to be a ‘flood’, or something against which ‘the tide must be turned’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

12. Did the #G8dementia summit evoke in you a feeling of being ‘fearful’ about dementia?

Yes

No

13. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about social care for dementia?

Yes

No

14. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about the possibility of a breakthrough in a cure for dementia?

Yes

No

15. Did the #G8dementia leave you clearer about the relationship between Alzheimer’s disease and dementia?

Yes

No

16. a) The #G8dementia sought to improve research and a lot of this focussed on ‘personalised medicine’. Did you feel this was explained to you so that you understand it better following the G8?”

Yes

No

b) Please elaborate if you wish.

[open ended]

17. The research community is absolutely clear about the distinction between normal ageing and disease: agree or disagree?

Yes

No

18. Do you feel that #G8dementia addressed the notion that people do not always have the right knowledge and information to manage their condition?

Yes

No

19. Do you feel that #G8dementia promoted ‘living well with dementia’, for example through health innovations?

Yes

No

PART B

Question 20

20. How well do you think the #G8dementia Conference did in addressing the needs of the following groups of the following people?

[Answer from 0 (not at all) to 5 (completely)]

Researchers
Pharma Industry
Persons with dementia
Carers of persons with dementia
Journalists and the media
Politicians
Big charities
Small charities

PART C

Questions 21 – 28

21. What do you believe the #G8dementia summit set out to achieve? Did the organisers achieve in their aims?

[open ended]

22. Do you have any concerns about the way the #G8dementia summit was conducted?

[open ended]

23. What do you expect the #G8dementia summit, in fact, will achieve ultimately?

[open ended]

24. Do you think the #G8dementia helped decrease the stigma which has been associated with dementia?

[open ended]

25. Do you feel the public is generally united in their perceptions of dementia, or do you there exists a diverse range of different perceptions?

[open ended]

26. Do you think negative perceptions of perception exist by members of the public? Why or why not?

[open ended]

27. Are there any positive perceptions of perception by members of the public?

[open ended]

28. Finally, do you have any views about what the aim or purpose of the #G8dementia summit was? Do you know how it was instigated, and by whom?

[open ended]

Tommy Whitelaw, Alzheimer Scotland and “Dementia Carer Voices”: caring about the carers

There is no doubt that Tommy Whitelaw is totally genuine in his driving ambition, of giving carers a voices. He doesn’t care about technocratic busybodies or career types who don’t actually care about dementia. Tommy is all about giving people who are probably the most vulnerable in society the support they deserve. Unsurprisingly, there is much love for what Tommy is doing.

According to the charity Alzheimer Scotland, some 82,000 Scots have dementia, 3500 of them under the age of 65.  The number is expected to rise to 164,000 by 2036. Tommy Whitelaw, who toured Scotland raising awareness of how dementia affects sufferers and their carers, by asking carers to write letters telling their stories that he presents to the Scottish Government.

Alzheimer Scotland provides a wide range of specialist services for people with dementia and their carers. They offer personalised support services, community activities, information and advice, at every stage of a person’s life with a dementia.

Dementia Carer Voices is a Scottish Government Project funded project to 2016 to engage with Health and Social Care professionals and students to promote a fuller understanding of the carer journey, provide a platform where carers can express their views and experiences of caring for a loved one with dementia and to harness the awareness raising activity undertaken by Tommy Whitelaw.

In the film below, Tommy – who before he began to care for his 72-year-old mother, Joan, toured the world several times, selling official merchandise for such groups as U2 and the Spice Girls – says that Celtic Park, Ibrox, Hampden and Fir Park would together not be enough to house all the sufferers, their carers and their families.

Tommy has had an “amazing journey” since doing his walk around Scotland and believes he can now speak up on behalf of other carers, and the struggles they face.

“I’ve been overwhelmed by the carers I have met – husbands caring for wives, wives caring for husbands, daughters and sons caring for parents – but behind their stories are difficulties similar to mine. But I’m broken-hearted by the sheer scale of the problem.

This project

  • Captures the experiences of carers across Scotland with a view to informing future policy and service provision
  • Raises awareness of the issues around caring for someone with dementia including among health and social care professionals, students and the wider public
  • Highlights the role of carers as natural resources; carers as people with needs; carers as people with independent lives
  • Empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia

Tommy recently writes:

“It breaks my heart opportunities missed along the way that would have helped mum and myself and helped us keep crisis at bay. We are on the most part private people at heart, we keep our private matters to ourselves and often crisis is reached. I reached a crisis point myself and can tell you it’s the most dreadful place to be.”

“We have to do all we can to keep improving care, keep promoting and signposting initiatives and support already out there in our communities locally and nationally.”

“For every person we let reach crisis as a society we fail them, for every one looking back like me opportunities missed are painful to look back on.”