Detailed results from twelve academics about their perception of the G8 Dementia Summit

As you’ll know, I had the pleasure of returning to Scotland for the Scottish Clinical Dementia Research Network one-day conference held on 24 March 2014 at the Beardmore Hotel Glasgow (nr Dalmuir), on perceptions of the G8 Dementia conference held in December 2013.

I am providing the answers verbatim so that you can see the exact wording of them.

All the delegates were people who had been following this conference, but all reported an academic interest.

1. What do you feel the Summit set out to achieve?

1	Its own perception of beliefs.
2	To raise awareness and treatment: showing huge increases in numbers.
3	To encourage international cooperation.
4	Raise the profile of Alzheimer’s disease; improve the profile of politicians.
5	Improve biological research; boost Pharma funding.
6	Increase research; better coordination; raise profile of dementia; and .dementia research.
7	Information; learning.
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9
10
11	Don’t know. Window dressing?
12	To be seen to be doing something.

2. Do you have any concerns about the way the Summit was conducted?

1	More about early intervention; but what about those who already suffer?
2	Yes – final reports not given.
3
4	I have limited knowledge of this area.
5	Scared people with military language; no mention of wellbeing; several opinion leaders not advocating living well with dementia.
6	No.
7	Not talking to people who understand people are different.
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10
11	Hard to tell who was invited but live streaming all very well but hard to follow it during a busy day at work. Seemed to have a pre-determined outcome/agenda. Ignores the needs of people currently living with dementia.
12	1. Language used – i.e. cure, timebomb 2. What about people who are already living with dementia and their carers?

3. What do you think are realistic positive outcomes of the Summit?

1
2
3	Greater awareness at all levels.
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5
6	Raised profile of dementia.
7	Break down barriers.
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9
10
11	Gave a certain focus to dementia but the notion of finding a cure by 2025 seems like a hostage to fortune. Would be great if that was a realistic goal but not sure it is.
12	Not sure.

4. Do you feel there are currently negative perceptions of people with dementia?

1
2
3
4	Yes – mental health issues may still be identified; poorly understood by the general public.
5	Yes – everywhere.
6
7	Treat like kids – no respect.
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9	Some – dithering, challenging, old.
10	Yes – a lot of fear.
11	Yes. Also negative perceptions of older people generally. This has implications at all fronts of the dementia diagnosis – diagnosis, treatment(s), end of life. The .media doesn’t help either.
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5. Do you feel there are currently positive perceptions of people with dementia?

1
2	Yes – positive perception increasing.
3
4	Possibly but in very small pockets.
5	Yes – but we need to stop all this “otherness” nonsense.
6
7	Within informed sectors.
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9
10	No.
11	To an extent, because I am aware of people living well with dementia but it is countered by lots of celebrities talking (mainly) about their dire experiences and the way that the media write about dementia.
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6. Ultimately, do you feel the Summit will change perceptions of people with dementia?

1
2
3
4
5	Make everyone think Alzheimer’s = Dementia (simply.)
6	Yes, it’s the start of a slow process.
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10
11
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7. How would you have done things differently in the Summit?

1
2	Don’t know: one way would be to increase funding to every aspect.
3
4
5	1. wider engagement; 2. Invest in more care and support; 3. Add in medical humanities; 4. Think about stigma.
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7
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11	Don’t know.
12	Focus on cause, care/treatment + living well/care.

8. How do you feel about the sharing of personal clinical data to improve research and treatment initiatives for dementia?

1
2	No problem here – Diabetes Scotland already does this.
3	Depends on maintenance of confidentiality. Not altogether clear at the moment.
4	Anything that helps; however anonymity protected.
5	This was a big part of the G8 Dementia but was cloaked in terms not clear.
6	It is necessary for all diseases.
7	Very supportive.
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9
10	Not sure.
11	Good idea provided it is stored responsibly – I have my doubts about that though.
12	In view of recent scandals etc – only possible if appropriate safeguards (?is it possible)