Meeting the World Dementia Envoy

1Dr Dennis Gillings is the World Dementia Envoy, appointed by the UK Prime Minister in February 2014. The creation of this role was agreed at the G8 dementia summit in December 2013. Dr Gillings is a consultant to the pharmaceutical industry and founder of Quintiles. The envoy’s role involves working with the newly created World Dementia Council and international experts to stimulate innovation and co-ordinate international efforts to attract new sources of finance, exploring the possibility of developing a private and philanthropic fund. He will also work with governments and stakeholders to assume a global leadership role in addressing the economic, regulatory and social barriers to innovation in dementia prevention, treatment and care.

On Monday evening in Canberra, he gave a public lecture invited and hosted by the National Health and Medical Research Council. I had the privilege of being able to attend the lecture, and the honour of being invited to join Dr Gillings and his wife, along with a small group of other experts in the dementia sector in Australia. It was illuminating, and I was also lucky enough to sit next to Dr Gillings, and Christine Bryden sat opposite him, and so together we had the opportunity of telling the advantages of engaging with consumers, including people with dementia, as well as prove we are not all dribbling into our soup, as Don Burke so disgracefully says in one of his DVD’s.

He spent the first 20 minutes on global and Australian statistics and figures and explaining the global dementia crisis, rather than focussing on the WDC and his goals and objectives. I was also quite concerned about the absolute focus on pharmacological interventions, and if not fur a cure, then for disease modification drugs, and also of the discussions about patients with dementia willing to take more risk to trial drugs, quite possibly well before they should be tested on humans. Yes, of course I’d like a cure, but not to the detriment of human beings.

Over dinner he asked me a lot about the interventions, in particular the rehabilitation program I have been using successfully for many years, and do believe he left the dinner table believing in this as a basic right. When I asked him was it ethical or moral to tell someone with cancer to go home and get their end of life affairs in order and give up, he agreed it was not, and so in the context of dementia, he easily agreed we must be offered better post diagnostic support and care, including rehabilitation to improve the quality of our lives.

The key messages from his lecture included a number of things. He began by saying “Perhaps people with dementia need to take to the streets in the same way the gay community did 30 years ago.” He suggested we need this zeal to fight dementia. Obviously he is not overly active on social media or he would have already heard us; we may not be walking with placards in front of a Parliament house, but we are speaking up loudly online, and at events, in droves.

During the lecture, Dr Gillings reviewed the global and Australian statistics, then went on to outline the 5 Priorities of the World Dementia Council as outlined briefly below. My notes were not perfect, but this gives you an idea of the lecture content.

Priority 1: Research

The first is research, and he said “effective treatments, must be available, ASAP” and we need “a faster pathway from early research to faster prescriptions” effectively “Speeding drugs to market”. He even met with the TGA to ask them to participate more by allowing more drugs to market, and make it a priority.

Priority 2: Finance

Dr Gillings stated that dementia gets 1/5 of investment compared to cancer; funds are needed to accelerate clinical trials; the scale of investment is the key to success; goals to identify and test the most promising drugs; and finally, he said “if we find the political will to make investments in research now, we will succeed” and that “dementia must have the same support as other diseases.” There was quite a lot of discussion around research and funding, and he also talked about governments providing tax incentives or R&D credits to increase research investment; “Pharma must believe the products will be approved” to want to continue investing in research into dementia.

Priority 3: Open Science

Open research and Big data was discussed, and the need for a structure around an easy 1-step access to all data globally, including failed research so others knew not to go down those pathways. There is not enough data sharing, nor transparency between the research community. In the question time, Christine asked him how did he anticipate encouraging academics to share emerging research, when often to the researcher, it was more about a career pathway, or about their own ‘discovery’? I good question, which he agreed was one of the big challenges in the research community, that he really had no answer to.

Priority 4: Risk reduction

Dr Gillings said this is perhaps the most controversial in the research community, and again over dinner said this was one of his biggest challenges as too many researchers were not that interested in it as the data does not support it [yet]. However he made the comment risk reduction including improving health and lifestyle factors, and that “common sense must prevail”, and there was data to support this approach in other areas, so why not dementia. He also said it was the “short term hope – until DRUGS become available!”

Priority 5: Care

The fifth priority of the World Dementia Council is care for people with dementia, and it needs to include technology and new models of care. He talked about the value of robots, showing a short clip of some in use and of technology being used to remind people to take medication, to help them up after a fall, and even to shower them. He said; “whilst technology and robots can assist in care, then do not replace face to face care”, although I suspect robots are on their way to replace humans in the care of people with dementia and the elderly, as many countries already do not have the young workforce to provide it. I suspect there will be times when there is no alternative, and no care is not preferable to a robot providing some care.

Dr Gillings closed with a few things, including stating the target of a cure or disease modifying drugs is the goal, by 2025.

He also said “advocacy and awareness is the key to progress.” My comment to him at dinner last night about that last statement was if this is true, then why are no consumers on the WDC? Of course, I hope to have that rectified very soon and in fact I am meeting him again today with a small group of consumers, specifically two people with dementia and two family carers, all of us active members of the Alzheimer’s Australia Consumer’s Dementia Research Network. Wish me luck!

18 thoughts on “Meeting the World Dementia Envoy

  1. Hi Kate.
    I attended the Melbourne meeting last night.I was very pleased to hear that the World Dementia Council WILL have a person living with dementia on the council. The following is from the third WDC communique:

    “We, the World Dementia Council (WDC), held our third meeting at the Foreign and Commonwealth Office, London, on Friday 17th October 2014. We discussed the significant progress made to date across each of the work streams. We were also grateful for a moving insight from Hilary Doxford who addressed the Council about her life with dementia.
    Given the strength of feeling within the WDC that our work needs to be shaped by the experiences and needs of people living with dementia, we will be inviting a new member who is living with dementia join the World Dementia Council.”

    Regards
    Chris

    • Thanks Chris. I knew about the Communique, and was well armed. Of course, I am hoping words turn into actions… and how can only 1 person represent the views of 44,400,000 people with dementia was another question I had.

  2. I am so pleased that you were there to provide some insight for these guys Kate.
    I am not sure why they always seem to favor drugs over humanity but it seems to me that sometimes the countries we expect to be the ones who may give us new and positive information have it the wrong way round.

    They DO need someone like you to show them the reality of what can be achieved without drugs.

    I was sent this article last night from a mate who lives in the UK and this yet again made it evident to me how behind some of those in the dementia field are, given the unsavory and negative flavor of this article.
    I also found it insulting and sad that this is the state of affairs as recorded by the media in the UK.

    http://m.bbc.co.uk/news/health-30272239

    I responded very strongly and vehemently regarding numerous stereotypical ageist comments that are within. I would be interested in your thoughts Kate.

    Keep smiling – 🙂

    Leah.xx

    • I agree with you Leah, although absolutely believe we need more done to support people with dementia at end of life, in the same way other dying people receive appropriate palliative care… I have seen so many people with dementia, including three family members, denied palliative care, becase they had dementia. But the article, along with so many continues to promote the imagery of misery. I’d also disagree there is too much focus on living well… what the… You keep smiling too girlfriend! x

  3. Didn’t see tons of dementia people (sorry, consumers) at the NZ conference the other day, and at the other 6 I have attended. The speaker is a spokesman for the drug companies, and of the old school, it appears, which is moving backwards. Good on you, Peter! I advocate no/minimum drugs, having got Pat off 27 meds over 14 years and now down to 3 — Aricept (10mg), vitamin E (400IU), and paracetamol (20ml) twice a day (morn and night), not to forget 3 bananas a day to prevent strokes by 20% and no constipation (regular as hell!). Can have 2 bananas, morn and night. She is just great as benzos and antipsychos have been stopped, constant weight over 5 years and eats like a horse — everything!.B razin iz sharper and she walks unaided now — and she is blind from the alz!

  4. Interesting, although after recently watching “The Dallas Buyers Club” I would have though that someone from the pharmaceutical industry would have realised that more effective treatments not faster drugs to the market is better.

    Like a lot of people, he seems to have his list upside down. It seems to me that maybe care starting with the abolishment of Prescribed Disengagement® should be a priority. How can you want to treat people as people when a priority is to treat them as guinea pig.

    ® Prescribed Disengagement used courtesy of Kate Swaffer.

    • Haha, loyal as ever my darling, but also it makes good sense, in fact, common sense … and I’d have to agree the priorities are upside down… and thanks for acknolwedging PD!!!!

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