The latest edition of Richard Taylor’s newsletter Alzheimer’s From the Inside Out was published today. If you want a deeper understanding of dementia, and the people who live with it, I highly recommend you become a subscriber by clicking here.
Here’s what Richard has to say about the latest research results to find a cure for Alzheimer’s:
Please, please tell them, tell politicians, tell your neighbors to stop this madness. Millions die as does 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. Fight to engage Alzheimer’s in those living with it, not primarily for those not living with it.
Richard also has a great update on the international I Will I Can Idea Library, an online resource created by people living with dementia and their caregivers and advocates that Richard helped create. Anyone living with dementia, caring for someone living with dementia, doctors, advocates and others are invited to submit their ideas through this website. Through “words, photos and videos, they bring to the forefront their every-day coping skills, ideas for raising awareness, caregiving strategies, programs for living purpose-filled lives, and wonderfully inspirational stories, and they put a face on dementia that has not existed on a global scale until now,” Richard writes below. Those ideas are then organized into chapters in an online book directed towards people who benefit from the idea.
More outstanding insights and resources below. Please subscribe and share!
Register for the upcoming A Meeting of the Minds Webinar!
It is long past time for people living with the symptoms of dementia to turn to each other for information and support. This is a missing piece in the lives of many, many of us. Who better understands what it is like to live with these intrusive and erratic symptoms than those of us who must somehow cope with them every day?
We are bringing folks with the symptoms of Dementia together into one online virtual room!
Please join Laura Bramly and myself in:
In order to participate, we ask that you register first. For the USA, please register here. For CANADA, please register here. If you have a question or issue that you would like us to discuss during the Webinar, you may leave it in advance in the “comments” section of the form. You may also do so during the Webinar using the chat feature that will be available.
10 am Pacific Time is 12 pm Central Time.
Laura and I look forward to meeting and greeting you in A Meeting of the Minds. See you there!
Up in the Clouds with Richard
These are major speeches plus the power point presentation I have written and spoken in the past couple of years. Those in red were recently posted. Click on this link to blast off to my cloud and read and/or download as many as you want.
Rochester 2012: The Art of Person-Centered Care
New York City 2012
20 Questions: People Most Commonly Ask
Family Alliance: Alzheimer’s From the Inside Out
London ADI 2012
ADI Breakfast Meeting
Battling for a Diagnosis
End of Life Issues
Who is Richard Taylor?
England – Scotland 2009: World Alzheimer’s Day
Pioneer Network: Response to Receiving Carter Williams Legacy Award
MoMA 2011: Creative Engagement
Spain 2011: Non-Pharmacological Intervention
Washington DC 2010: Love, Loss, and Laughter
Zurich 2010: Ethics and Dementia
NEW – Living a Wholehearted Life: Dr. Brena Brown
Updated: Richard’s Favorite Links
Richard’s New & Updated Website!
I Can I Will – Update
Tell the world about your experiences with the stigmas associated with the diagnosis
and symptoms of dementia.
I CAN! I WILL! is a website where people living with dementia, caregivers, volunteers, medical professionals and others can post their ideas and stories. Through words, photos and videos, they bring to the forefront their every-day coping skills, ideas for raising awareness, caregiving strategies, programs for living purpose-filled lives, and wonderfully inspirational stories, and they put a face on dementia that has not existed on a global scale until now. With postings from the UK, Turkey, USA, France, Hungary, India, the Czech Republic, Australia, Canada, New Zealand, Germany and other countries, the goal of the website is to collect information and ideas from our global “brain bank,” and encourage visitors to the website to apply those ideas locally in their own lives and communities.
I CAN! I WILL! is sponsored and hosted by Alzheimer’s Disease International and edited by Laura Bramly (Canada) and Louanna Cochirella (USA). The idea for the website came from Richard Taylor, and he continues as an advisor and contributor.
The website is updated regularly with new ideas. By joining the Facebook page
(www.facebook.com/ICanIWillDementia), or subscribing to the website, visitors can receive notification of new postings.
Please visit ICAN!IWILL! (www.alz.co.uk/icaniwill), read some ideas, contribute your own thoughts, and tell your friends about this wonderful rich resource!
Coming Soon to Your Neighborhood – Walking for the Cure
The question is not, should you join others in walking (and donating of course) to end Alzheimer’s Disease. Since the local chapters depend on these walks, since their hearts, minds, and services directly, and with the exceptions of salaries, overhead, and a few dollars for advocacy – the dollars raised by these walks provide their working capital. To stay away from the walks because 30-40% of each and every walk produced dollar goes directly to the National Alzheimer’s Association to primarily support their *lemming like rush to spend their money and efforts promoting mostly research to find a “cure pill.” Ask specifically that your walk donation go to fund some specific service of theirs’. Personally, I prefer services and program for folks living with dementia. Write that on your donation check. There is no guarantee this will keep all the money in your local community, but it is the best you can do, given the attitude and contract of the National Association with each of their local chapters.
This walk was formerly called The Memory Walk. When I was first diagnosed, walkers would wear a picture on their backs of someone they were supporting. The walk was leisurely, poorly attended, and most amenable to conversations between walkers. Now large numbers of walkers are important to the National Sponsors. Last year although the number of walks increased, the amount they raised decreased. Perhaps they are walking up the wrong street?
Just grit your teeth/hold your breath and walk. Express your concerns and support with the local chapter about the bind they are in. Offer to donate something in-kind. Offer to donate your time. These two donations are not taxed I believe by the National Association. We need every local chapter, every local source of support we can create and support. Some chapters have left the National Association, but most remain trying to serve two masters. Guess which master (the National Association or the real needs of individuals living with the symptoms of any type of dementia) are given first priority when the donations are counted?
The situation is to my way of thinking not right, not fair, not moral, and should be changed. But as we all learn over and over again, abstract concepts like right, fair, morals are just that – abstract, frequently open to individual interpretation. The universe, the world, we are all relative – related to what our mind tells us, what our feelings tell us. I so want to believe that it is right, fair, and moral to attend to those who cannot attend to themselves, the rub comes in how we decide to “attend.” Do we attend by scaring people into donating and supporting “cure” research instead of engaging and disabling stigmas, and donating and supporting “quality of life” research?
You decide. I have!
Lemmings are small rodents, usually found in or near the Arctic, in tundra biomes. The lemmings and voles are the rats and mice of the Arctic. The lemmings have very short tails. They live underground in summer. Because the top soil freezes in the winter, they cannot burrow underground then, so they live under the snow during the colder months. They eat plants and roots. If they find plenty of food, they willhave extra-large families that year.
In a year with plenty of food, millions of lemmings will be roaming the tundra. The owls and foxes have more food than they can eat. They will have extra babies in the years when there are so many lemmings. However, the tundra does not have enough food for millions of lemmings. They rush across the tundra looking for food, and are eaten by predators or starve to death.
Planning for Hope
Planning for Hope captures some of the most brilliant and passionate researchers exploring early diagnoses for this rare disease. Frontotemporal Disease or Dementia (FTD) has been misdiagnosed along with other neurodegenerative diseases that cause dementia in young people in their 40s, at the peak of their careers and in the prime of their lives. Most importantly, families have stepped forward in this poignant documentary to share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD, and the same could be said for most other forms of dementia too.
It is a labor of love produced by those who are living with some form of FTD and their caregivers. It took them many years to raise the money to make this happen. It is well worth their time and effort.
I am looking for folks who are interested in leadership positions for a program to make their community/town/city/hospitals/police departments/etc. dementia friendly. If you just might be interested in leading an effort in your community please let me know – firstname.lastname@example.org
If you might be interested, but want more information please check out these links: Developing Dementia Communities in the UK as well as Ligue Alzheimer.
This is a movement that is very active in Europe, led by Alzheimer’s Europe, Alzheimer’s Belgium, and the English Alzheimer’s Association, but sad to say, has not “caught on” in the U.S. of A. Join yours truly in leading your community to make it a dementia friendly place to visit, shop, live in.
OMG the Epidemic IS Alzheimer’s Disease
“Alzheimer’s disease is the most common form of dementia,
accounting for as much as 70% of all cases of dementia.”
(From the 2012 Yearly Statistical Report of the National Alzheimer’s Association)
For those of you who are long time followers of my newsletters, you may recall I have been tracking the claimed percentage of persons living with dementia who have a form of it called probable Alzheimer’s Type. When I was diagnosed, some nine or ten years ago the percentage was claimed to be 40%. Now if you read between their lines they are claiming more than 50% and perhaps, maybe as much as 70%. Guess which percentage (50%+ or 70%) will be used in the media and by many professions, all of whom should know better. Honest, this is just not me nitpicking. If they are to continue to use the lable Alzheimer’s Disease, instead of Dementia, it is surely in their best fund raising interests to be representing the vast majority of folks living with some form of dementia.
There has been through the years a steady climb (inflation) of the % of people living with dementia who have probable Alzheimer’s. Some of this may be due to the hype effecting what diagnosing doctors are seeing . “I (mostly/only) see Alzheimer’s Disease when I look, not other forms of dementia that I don’t ‘know’ much about.”) and/or it is an accidential/purposeful inflation of the percentage to serve the fund raising efforts of some to redefine the Dementia crisis into the Alzheimer’s crises.
You decide for yourself. I have.
|Alzheimer’s from the Inside Out is a stunning achievement. In this collection of essays, Richard Taylor gets at the essence of dementia, and how it has redefined his relationships with family, friends and even with himself.There are no answers when it comes to Alzheimer’s, but Richard asks all the right questions. Alzheimer’s from the Inside Out is much more than a resource for anyone dealing with the disease. Although the book includes plenty of practical information, Richard goes beyond test scores, standard medications and neuroimaging to the more important philosophical and psychological aspects of life after diagnosis. He takes the focus off the disease, and puts it back on the person.|
I wish I’d read this book when my father were alive. I would have worried less about what was wrong with him and worried more about just being with him.
This new, 2-disk program is a compilation of honest answers about dementia from medical doctors, professional care partners, family members of those diagnosed with dementia, and a person living with it.
Living with Dementia
Together, in this powerful presentation, G. Allen Power, MD., and Richard Taylor, PhD., redefine dementia, and challenge viewers to make a dramatic shift–from viewing dementia as a series of deficits to viewing it as a shift in the way a person experiences the world around them.
Live Outside the Stigma DVD
Everyone talks of the Myths and Stigmas attached to the words you have dementia, probably of this or that type. What are some of these myths and stigmas?
Folks living with the symptoms of dementia – breaking bread together in each other’s homes – creating new friendships and social support networks with other kindred spirits.
Email me for a copy!