I received this yesterday, and decided that as Richard was so well admired and loved by thousands of people around the world, that I would share it with you.
Richard will be sadly missed by many.
I know that many friends are taking part in an online remembrance project, tomorrow, but due to a hospital appointment, I will not be able to take part
I could never thank all of you enough for all the kind words you have sent to our family about Richard. Many of you have sent the most amazing stories about how you met Richard, projects you worked on, and even how he touched your lives in his own unique way. That was the Richard I grew up knowing. As promised I am sending out the last newsletter Richard started. I am going to send it out exactly as he left it and hope this will still provide everyone some helpful information. So apologies in advance for the lack of editing. In the near future I will have to close down Richard's E-mail account. I know some of you still have a few projects working with Richard which I am doing everything I can to jump in and help see completed. So I ask that any of you who need my direct contact information to please reply and I will be sure to get it to you.
The first question I am continually asked is who will take Richard's place in this fight? My personal wish is not for any one person to replace him. I would wish to see hundreds if not thousands that take his place and all STANDUP AND SPEAK OUT!
From the Inside Out
News and views
the ears of
a person living
with the symptoms
Hello, again. Still Richard here, still living with more and more symptoms of dementia I can't seem to work around/overcome. It is a sign, certainly of my advanced age, that every time I send one of these newsletters out there is a large deteriorating health section. This issue is no different, but I'll spare you the details and just mention my sometimes out of control heart, my aching lungs caused by fluid accumulation, and more dementia symptoms and stronger symptoms to the point where I just can't seem to find a means of "fixing" them so they don't interrupt the life I want to live.
Without knowing it for sure I have been overwhelmed by my cognitive disabilities. Like a blanket carefully laid over my head while I was sleeping, and when I awoke I saw and reacted to a different world around me, and in me. I can't trust my own judgment any more. I can't handle my own calendar, meetings, goings and comings from day to day. I still know what to do, most times. I just forget it, confuse it, and/or screw it up while I am doing it. I have lost more weight and am to the point where my doctor wants me to walk around with a feeding tube hanging out of my side. You walk up and down the aisles of grocery stores and the tube sniffs out things I should be eating, pulverizes them, and sucks them in my side and deposits them somewhere in my small intestine.
There isn't much new in this "newsletter" which in and of itself is a reflection on how I see Alzheimer's, especially Alzheimer's research, and the National Alzheimer's Association. Same old same old, same old blinders, same old lack of a plan, same old whine for money, lots more money. They are celebrating the actions of one committee in the house which voted to add 350 million dollars to the 545+ million they are already spending, without a clue as how it needs to be spent, nor why it needs to be spent here or there. Some research supporters are already sounding the threat that until Congress funds research at the 2 BILLION dollar level they aren't going to reach the little bit of heaven they have promised by 2025. A world without Alzheimer's is their goal and I have no doubt that if they find out what causes it, if what causes it has little to nothing to do with the disease process, and more to do with a natural part of growing old like arthritis or, poorer eye sight. We can work on the symptoms of these issue, but we can't "stop the ageing clock." Even with the most expensive treatments, even if they discover a way that everyone can afford the cure without selling their own organs to cover the high cost, you will all have to wait until the current 5+ million souls living with the symptoms pass away, then you can talk realistically about what a world without dementia, probably/maybe may be possible.
Until then I shall continue to live my life as best I can, with enablers supporting me more and more. I shall never give up, thrown in the towel, pull the cover over my head and waiting for the next BINGO game to begin.
I shall always try every day as hard as I can to be Richard. I shall try every day to find joy, meaning, usefulness, purpose in my life. I invite 5,000,000 kindred spirits to join me in adopting a positive self-image of yourselves, a positive outlook to your lives, and seeking to squeeze out as much out of each day as is possible! Find a purpose, live through your purpose. Truly be all you can be, not what "experts" tell you.
While attending Alzheimer's Disease International in Perth, Australia last April, I was invited by Executive Director Marc Wortmann to attend a meeting to share opinions about what our top priorities should be regarding Alzheimer's. Although my conference schedule did not allow me to attend in person, I passed my comments on to Marc, because I feel very strongly about this, and I knew that my thoughts would likely fall outside the majority opinion.
I think it's fair to say that most of the people at the meeting-and many others around the world-would list research into new medications as the top priority for Alzheimer's. Many are pushing for a cure, and I imagine that even most of those who realize how daunting a prospect "cure" truly is would still argue that developing new treatments to slow onset and progression would take the top slot.
I beg to differ and will probably ruffle a few feathers in doing so. But keep in mind that in spite of my holistic approach and rejection of many narrow bio-medical precepts, I am viewing this as a physician and scientist (and a bit of a mathematician as well).
I told Marc (C.E.O. of Alzheimer's Disease International) that
I believe our top priority is to build capacity and capability in our communities, both for our aging population in general, as well as those living with changing cognitive abilities of all kinds.
Here's why: The rapidly expanding demographics regarding Alzheimer's prevalence are a microcosm of our global aging boom, because Alzheimer's (along with most other forms of dementia) is, first and foremost, an age-related condition. The rapidly rising number of people living with the diagnosis is not due to our risk increasing-in fact recent studies show that the lifetime risk of developing Alzheimer's is decreasing with each generation, mainly due to better preventive and cardiovascular health. In other words, your lifetime risk of getting Alzheimer's will be less than that of people born in the decades before you.
The rapidly rising number of people with Alzheimer's that we see in the US and most high-income countries is mainly due to all of those aging Baby Boomers, who are creating a huge bubble in the ranks of older adults-10,000 Americans turning 65 daily. And we as a nation are ill equipped to respond in a positive way to this aging boom, let alone the increasing numbers of people living with a diagnosis of dementia. Our solution to date has been to force people to live fairly independently, with very little in the way of age-inclusive community supports; and then when they can no longer manage on their own, we move them to a variety of "senior living" environments, which are booming as quickly as the Boomers!
This is a recipe for disaster.There is only one number you need to know to understand this: the Potential Support Ratio (PSR), defined as the number of working adults for every retired adult. In 1950, the global PSR was 12:1-that is, twelve working adults for every retired adult. By 2000, the ratio had fallen to 9:1, and in 2050 it will be 4:1! So we clearly cannot respond to the aging boom with more senior living campuses; who will build, staff, and maintain them??
The only sustainable answer is age-inclusive communities, and it follows that such communities must accommodate all abilities, including changing cognition. There are other benefits to this approach-keeping elders (and people living with dementia) engaged in community will not only reduce excess disability and costs; the community also benefits from the wisdom and experience of older adults (including those living with dementia).
At Alzheimer's Australia Western Australia in Perth, a program has been running for several years that connects people in the community who are newly diagnosed with Alzheimer's with volunteer opportunities in their community. So when much of society is saying, "You're dying; get your affairs in order" (a message described by Kate Swaffer as "prescribed disengagement"), the message from AAWA is, "We need your talents; your neighbors need your help. You have a purpose." Compare the outcomes and costs of this approach versus the probable early move to a "senior living campus" or nursing home that disengagement would cause.
In the UK, 30,000 bus drivers around London were given education about dementia, to help them to be more understanding and helpful of their riders' needs. Inclusive community initiatives in UK, Australia, and many other countries are far ahead of the US; and as with global warming, the period of time during which we can respond before things get really bad is growing short.
Do I support drug research for Alzheimer's? Of course I do. But I feel that meaningful progress in drug treatment will be very slow in coming, and that there will never be a day when people do not forget more than we think is normal; that's the result of nearly doubling our life expectancy over the past century.
Even if we waved a magic wand and cured all cases of Alzheimer's tomorrow-the sixth leading cause of death in the US-what would the result be? More older people, whom we are already ill equipped to accommodate. And many of them will eventually develop other age-related conditions, including the myriad other forms of dementia that exist.
So, to me, the priority is clear. Developing an inclusive society is Job One. You can read this argument in much more detail, along with a detailed vision for the "Inclusive Society," in Chapter 11 of my latest book, Dementia Beyond Disease. Tell me your thoughts about this!
Hello, as usual Dr. Power's message should be characterized as Dr. Powerful. Organizations, large organizations are trying to confront the inevitability of a world population which has never been older, never been as vulnerable to the symptoms of dementia by throwing money at a bunch of willing researchers to cure away the problem. It hasn't worked, it isn't working, it won't work (but that's another story).
What we already have to work with are our communities. While readiness varies greatly between governmental entities, citizen support services, and an aging and aged psycho social infrastructure, these services can be, should be our first respondents to this crisis. Our communities aren't just the best vehicles to work with, to strengthen, to fine tune, they are our only tools to realistically deal with the inevitability of this growing segment of everyone's population.
While we worry about pot holes, more police officers, occasional terrorist's terror the aging of the world continues. When will human needs trump all and become the priority of now and of the future? When will our leaders think, plan, and act for a better tomorrow starting today?
Slow down, if not temporarily stop this baseless and useless rush to fund cure research. If you want to collect money for a real issues of dementia then support psycho-social research. Leadership isn't lacking, there simply isn't ANY forward thinking leadership. A cure is not a solution, it is a twenty plus year hope of many. It is an easy "fix." A fix which simply does not exist, and will never exist to wipe away dementia and return us all to the golden years when people didn't live long enough to confront the symptoms of dementia, they just died earlier.
It is time for us each and all to stand up and speak out about an issues which is unresolved, out of control, and impossible to reach.
Forward together, towards true, inclusive, and well funded community efforts to adjust and support the aging of their citizens.
Money, Money, Money! Trust us, we will tell you when you have given us enough!
Hello, and so the folks who claim to be taking care of our brains are demanding of congress to "show them the money." I hope congress doesn't ask them to show some results, show them a time line, show some limiting of the scope of research because they now actually know where they are going. Until then I suppose each of these bodies can continue to blame the other for why they aren't making more progress. In the meantime - the people
whose brains need the most support from each of the organizations are left
to fend for themselves. Shame on you all for arm wrestling each other for more money, power and results, and have so little to show for it thus far, and so little to offer in the way of science and a rational plan for the future, other than of course more money, faster please.
I find it easier to send my writings and presentations to my cloud site than it is for me to post them to my home page (although I attempt to do both). Float up to the cloud and look around. There are lots of links, articles, opinions floating around up there, and new ones appear every week.
and/or write me directly (email@example.com).
You may sign up for this newsletter on my home page (upper right hand corner of home page). Most all of my writings and presentations are posted on my cloud site which is accessible on my home page.Use this area to provide your contacts information about your organization.
Richard Taylor, Ph.D. Alzheimer's from the Inside Out