Day: April 18, 2014

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

Shibley Rahman 0 Comments

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.

I have already reported the 88 responses from the general public about their perception of this conference. This work identified quite clearly who were perceived to be the biggest ‘winners and losers’.

 

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.
8
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.
8
9
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.
4
5
6 Raised profile of dementia.
7 Break down barriers.
8
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.
8
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.
12

 

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.
8
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.
12

 

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.
7
8
9
10
11
12

 

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.
6
7
8
9
10
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.
8
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)

 

 

The legacy of “One hundred years of solitude”: a truly innovative exploration of a type of dementia

Shibley Rahman 0 Comments

book cover

Nobel prize-winning Colombian author Gabriel Garcia Marquez has died in Mexico aged 87.

Garcia Marquez was considered one of the greatest Spanish-language authors, best known for his masterpiece of magical realism, “One Hundred Years of Solitude”.

The 1967 novel sold more than 30 million copies and he was awarded the Nobel Prize for Literature in 1982.

And yet many don’t appreciate the relevance of this work to dementia.

In his renowned novel, García Márquez depicts the plight of Macondo, a town struck by the dreaded insomnia plague. The most devastating symptom of the plague is not the impossibility of sleep, but rather the loss of ‘the name and notion of things’.

The description in One Hundred Years of Solitude is very similar to that of the cognitive difficulties experienced by patients with semantic dementia (SD).

In an effort to combat this insidious loss of knowledge, the protagonist, José Arcadio Buendía, ‘marked everything with its name: table, chair, clock, door, wall, bed, pan’. ‘Studying the infinite possibilities of a loss of memory, he realized that the day might come when things would be recognized by their inscriptions but that no one would remember their use’.

Semantic dementia, a clinical syndrome characterized by a progressive breakdown of conceptual knowledge (semantic memory) in the context of relatively preserved day-to-day (episodic) memory.

Remarkably, García Márquez created a striking literary depiction of collective semantic dementia before the syndrome was recognized in neurology.

Garcia Marquez had been ill and had made few public appearances recently.

He achieved fame for pioneering magical realism, a unique blending of the marvellous and the mundane in a way that made the extraordinary seem routine.

With his books, he brought Latin America’s charm and teaming contradictions to life in the minds of millions of people.

Although frontotemporal dementia and semantic dementia  are associated with different overall patterns of brain atrophy, regions of gray matter tissue loss in the orbital frontal, insular, and anterior cingulate regions are present in both groups. 

The clinical syndrome now widely referred to as semantic dementia was fi rst described at the beginning of the 20th century by Arnold Pick, a remarkable neuropsychiatrist, neuropathologist, and linguist working in Prague, and by several other early behavioural neurologists.

Oddly enough, given the striking nature of the syndrome, this early work was followed by a long period of neglect; but about three-quarters of a century later, two initially separate streams of investigation converged to reawaken interest.

In 1975,  Elizabeth Warrington, now Professor Emeritus at Queen Square and lifelong doyenne of neuropsychology working with other greats such as Prof Ros Mccarthy, described three patients with a combination of visual associative agnosia, anomia, and disrupted comprehension of word meaning.

Shortly before this report, Tulving had proposed a distinction between episodic (facts) and semantic (concepts) a  memory, with the former referring to personally experienced memories specifi c to time and place, and the latter to culturally shared knowledge of word and object meaning.

Drawing on this distinction, Warrington concluded that her three patients had a selective loss of semantic memory rather than several separate cognitive deficits.

Dementia is a condition causing a steady decline in functions of the brain, accompanied by changes which can either be seen on a microscopic or macroscopic level, due to some underlying process.

The most common type of dementia worldwide is Alzheimer’s disease, typified in its early stages by a decline in short term learning and memory.

Here are Dr Peter Gordon, Kate Swaffer and Norman McNamara talking about my book.

For more information about my book, please refer to this page.