Latest Alzheimer’s From The Inside Out Newsletter

Hello, 

Alzheimer’s disease is not a thing, it is a label. It is not a beast, a death sentence, a soul robber, a life shortener. It is what you write yourself on the label. There are lots of people standing around passing out their own labels that they claim describes what Alzheimer’s is and is not. These were written by people who have never lived with the symptoms of Alzheimer’s they have lived with or around people who are living with Alzheimer’s. 

 Others need to flush out as much uncertainty off of the labels as possible. They don’t want to live/work in an ambiguous world. Most unfortunately this is simply impossible. It leads to all sorts of stigmas, hoaxes, stages, theories, etc. All of which are then printed up on labels and passed around at conferences, support meetings, etc.

 If and when we can return to each other – that is when there is a chance of life becoming real again. 

When we fall in love, especially for the first time we start writing labels for our new loved one as fast as we can. S/he is simply wonderful at everything they do with you and to you. Then we spend the rest of our lives together slowly erasing this or that part of the labels, until we come to love or not love them as they  are. And who they are changed – be it from illness, losing a job, acquiring a disability such as Dementia probably of this or that type. 

We are constantly relabeling, instead of laying aside the label machine and just accepting, understanding and loving them for who they are today.

What was a good habit, becomes a bad habit. What helped us understand life early on frequently inhibits us from understanding it later on. 

Richard

  But wait, maybe we learned so much about Alzheimer’s Disease, we should renew our hope and our financial commitment and should urge others to keep trying harder, not different.

From the Alzheimer’s Association: media line, 312.335.4078 Alzheimer’s Association Statement 

Bapineuzumab Phase 3 Results (Study 302 in ApoE4 carriers)

Chicago July 23, 2012 – “The Alzheimer’s Association, in its role as the leading advocate for the more than 5 million people with Alzheimer’s in the U.S., their caregivers and family members, closely observes the trials of experimental Alzheimer’s and Dementia therapies.

  While we have high hopes for every Alzheimer’s and dementia therapy trial, history shows that progress is incremental and we will have setbacks along the way. These setbacks also provide critical information to the research community for application in future studies.”

There are an endless amount of failures we can fund. It’s been more than 20 years from the last incremental success.

 The National Alzheimer’s Association is not surprised by these newly-announced results (Ha! Their press releases joined in the shouting about this drug, the newest and best chance for a pill in the pipeline actually making a positive difference in people’s lives) based on reports from earlier studies in carriers of  the ApoE4 Alzheimer’s risk gene.  While not the overall positive results we would all hope for, a positive finding is that the side effects profile appears to be manageable based on the data currently released. This gives us hope for the potential usability of drugs of this type (immunotherapies that target a protein called beta amyloid in the brain) in future studies. The two sponsoring drug companies announced they are through with research on this approach. (Apparently the Association still maintains “hope” that one $30 million research failure is not enough honest effort to disprove a theory close to their hearts and minds.)

 The fact that the drug engaged beta amyloid yet did not produce significant changes in how and most of the subjects remember seems to have escaped them. For years, they have been one of the leading proponents of this amyloid theory of what produces the symptoms (not what causes them – a fine line they sometimes forget to mention – no one ever claims to know the first cause).

Maybe if you knew you never have symptoms, they can claim success?!

 What is wrong with this logic?  What is wrong with this world?

  Dr. Ronald Petersen, director of the Mayo Clinic’s Alzheimer’s Disease Research Center said of the three drugs, “It may not be a home run in terms of improving memory and cognition, but if brain imaging or spinal fluid tests show the drugs are hitting their target, they will be regarded as successes.” (It was a strike out as far as Pfizer and the rest of the world are concerned!) Dr. Petersen is a very nice (I’ve been told by people whose judgement I trust), mostly reasonable person, but when it comes to Alzheimer’s Disease Research results I fear his bias towards Mayo Clinic, led of course by his center, discovering at least some fragment of the Holy Grail of Alzheimer’s Research – a pill to slow down or cure the condition – this bias clouds the fact finding and reasonable portions of his mind’s pronouncements. He too has seemed to have evolved, sadly I might add, into one of the Captains of the cure research cheerleading squad, at the expense of significantly more psychosocial research (which would take money out of the “cure” funds. Even when the team is losing, he cheers louder and more unreasonably- sure that victory is closer as a consequence of every loss. As every cheerleader knows their job is to keep the hope and spirits alive in the hearts of the crowd, in this case donors and the government, so they will come back again to cheer on a team with a 20 year losing record).

  It is of interest to note these results were not released a few weeks earlier at the annual cheerleading practice of Alzheimer’s researchers held this year in Toronto.  Might have dampened the enthusiasm for the sport! Except it isn’t a sport, it is a building of false hope, a vacuum filled with relatively few researchers.

 William Thiess, scientific director of the Alzheimer’s Association, agrees. He said that  “Even if there is just a small effect, that would be a huge finding because that would let you know you had a drug that worked…It then could be tried as a preventive medicine or given earlier in the course of the disease when it may have more impact.” 

Doesn’t he understand that if there is a small effect it could quite possibly be a placebo effect – that is why it must be a statistically significant (large enough) effect to consider the cause-effect claim to be valid?  And this person is the scientific director for the Association. Wow! This rush to give drugs before symptoms, diagnose(dare I say predict/guess) before the symptoms appear, and  then promote and sell more drugs for longer periods of time seems to be a new strategy after all the old ones.  Wait until you have symptoms which haven’t produced any successes.  Maybe if you knew you never have symptoms, they can claim success!? What is wrong with this logic?  What is wrong this world?

Where their hope rests on this almost admitted failure – the fact there were no unmanageable side effects, seems to be a shaky foundation to rest our hope for the future for this line of research.  But, it will not stop millions of dollars being invested in it by others.  As long as there is money available, there are researchers willing to spend it.

Please, please tell them, tell politicians, tell your neighbors to stop this madness. Millions die as does do the hope for a cure, while the quality of their lives could have been improved had we a more humane and fact-based approach to the priorities of how we allocated dementia research dollars.  Don’t walk for a cure.  Support the efforts. 

Fight to engage Alzheimer’s in those living with it, not primarily for those not living with it. Some evidence-based research now exists on lifestyle changes that reduce the chances of living with these symptoms. An all too slowly growing body of evidence and research exists of concrete ways to improve the quality of the lives of folks living with the symptoms. This type of research (psychosocial) is what needs to be supported, walked for, spoken up for.

he priorities of how we allocate dementia research dollars. Don’t walk for a cure. Support the efforts. 

Stand up and Speak Out!

Richard

England has a National Strategy – we do not. Growing out of that strategy are dedicated pots of money from which communities can draw to fund their own plan. We have a plan without a strategy, or at least without an inclusive strategy. We have a National plan written without consulting the States who already have plans of their own. We are not inclusive in our plans, especially inclusive of individuals living with the symptoms of dementia (the English refer to us as those with lived experiences). We have an exclusive plan – geared almost entirely of researchers and their cheerleaders. The few representatives on the plan commission who are not researchers or in bed with them did not leave their imprint on our National plan.

Welcome to the  Dementia Partnerships (www.dementiapartnerships.org.uk) website, a resource for people, partnerships, and networks working to improve outcomes for people living with dementia, sponsored by NHS South of England.  Find out more about their inclusive strategies and the plans that are growing out of these strategies at their website.

NHS SOUTH OF ENGLAND DEMENTIA CHALLENGE 2012

  This Challenge is for Clinical Commissioning Groups (CCGs), working with local authorities, Health and Wellbeing Boards, the NHS, the voluntary and community and independent sectors, universities, industry, and people with lived experience, to identify and implement practical solutions to the problems faced by people living with dementia.

  This fund provides an opportunity for local communities across the South of England to 

respond to the Prime Minister’s Dementia Challenge to identify and implement practical solutions to the problems faced by people living with dementia. 

 The fund of at least £10 million is open to Clinical Commissioning Groups the South of England, offering the opportunity for them to collaborate with partners from any communities and sectors within the South of England, and beyond.

NHS SOUTH OF ENGLAND DEMENTIA CHALLENGE 2012 – The Strategy

 1. Providing practical solutions

2. Supporting widespread adoption

3. Promoting local sustainability

4. Sharing recognized benefits

5.Delivering whole system approaches

 This fund provides an opportunity for local communities across the South of England to respond to the Prime Minister’s Dementia Challenge to identify and implement practical solutions to the problems faced by people living with dementia. The fund of at least £10 million is open to Clinical Commissioning Groups in the South of England, offering the opportunity for them to collaborate with partners from all communities and sectors within the South of England and beyond.

In addition to planning, organizing, and running a great Olympics, it is apparent they are also good at planning, organizing, and running an inclusive, balanced, fully-funded National Dementia (they don’t refer to it as an Alzheimer’s initiative) effort. “God save the Queen” (and the Prime Minister, a leader who is leading his people and government in a well thought-out response to the world-wide pandemic of Dementia).

Richard