The Dementia Imperative
Written by: Paul Raia, PhD | October 26, 2011 | Filed Under Living with Alzheimer's
The leading edge of the Baby Boom tsunami turned 65 this year, myself included, causing a great clamor in the media and among social architects who ponder the impact that the coming 78 million boomers will have on our society and on our healthcare system. Over the next 30 years, we can expect that 10 million “boomers” will be living with Alzheimer’s disease in the United States.
The sheer weight of these numbers heralds the eventual collapse of the current system of residential dementia care in this country. Long term care in the form of assisted living and nursing home care may be a partial option for some, but we will need new, low cost community-based models of care. We boomers have a history of changing societal norms and a clear preference for individual comfort. Staying at home with the availability of convenient comprehensive dementia care is likely to be a targeted demand of our generation.
We should be asking today how the numbers of expected individuals with dementia will change geriatric care as it is practiced today. What new systems need to be created? What new models should we be testing now? Who is charged with orchestrating the transformation?
The yet to be created model of community care will have a treatment focus, not a custodial care orientated, because that is what we boomers will demand. Perhaps, the closest model we have now to what is needed in the near future is the Adult Day Health concept. This model would have to be dramatically morphed into something different from its current iteration.
Because we boomers will demand it, the day program will need to shed the infantile “daycare” connotation. This new non-residential model must be seen as an adult activities center, perhaps staffed on the cooperative model, at least in part, to keep the costs lower. Under one roof, the center might have a primary care physician, a dentist, a podiatrist, a psychiatrist, a nutritionist, a physical therapist, an occupational therapist, social worker, dementia family educator available on a regular, but not daily, basis. The program would be clearly a mix of therapeutically focused and purely fun activities appealing to a variety of ages and those at various stages of dementia. Such centers might be open 7 days a week for 12 hours per day.
We need new ideas, new plans for the future—with more than 10 thousand boomers turning 65 each day, the clock is ticking,
PermalinkTicking Time Bomb
Written by: Paul Raia, PhD | August 8, 2011 | Filed Under Living with Alzheimer's, Research
There is an accumulating body of evidence indicating that the pathology of Alzheimer’s disease, that is the physical changes in the brain, start long before the subtlest of symptoms are noticed. It is estimated that these changes in brain cells may begin as much as twenty years before symptoms are present. Because the brain is made up of a hundred billion cells, we can afford to lose several hundreds of thousands of cells before brain function is compromised.
A team of researchers is looking at the possibility that Alzheimer’s could be diagnosed with some degree of certainty in these very early years of pathological change in the brain. They have developed a protocol that involves several different biomarkers, or indicators, that together are prognostic of pre-symptomatic disease. These biomarkers might include proteins in the blood serum and spinal fluid, various hormones, chronic inflammation, results from imaging tests like PET and MRI scans, genetic testing, and medical history. These biomarkers are currently being assessed in order to create standardized diagnostic guidelines. Within the next few years these guidelines will be available to the medical community for general use. This will mean that hundreds of thousands of people could be identified as having pre-clinical Alzheimer’s disease.
One could legitimately ask “Is this a good thing or a potentially very bad thing?” Could it produce mass despair in those who have the “ticking time bomb” in their brains, particularly if there was nothing that could defuse the bomb? Or, would the sheer weight of the pre-clinical masses serve to speed the cure or at least a significant treatment that would slow the progression?
Researchers tell us that it is entirely possible that medicines that are currently available, if given to the pre-clinical population early on, might be disease altering. Moreover, studying the very earliest changes in the brain that forecast Alzheimer’s disease might further our understanding of the disease process and give us new targets for drug trials and a potential for cure.
The prospect of the early diagnosis of a fatal disease, twenty years prior to any symptoms, with no cure sets up a ponderous ethical dilemma.
Researchers and clinicians believe that the demand for this screening will be significant once it is available. I’m not so sure. Perhaps there will be some altruistic volunteers who come forward in order to advance our knowledge of the disease or more likely, once a disease altering drug is found the flood gates will open and thousands will seek screening.
Human nature being what it is, why would you want to know unless there was clear and convincing evidence that you could do something about it?
PermalinkSaying Thank You
Written by: Jim Wessler | July 29, 2011 | Filed Under Alz Things
How do we thank our volunteers? After joining my son and several friends in completing the century ride of last weekend’s Memory Ride, I was asked this question…and it’s a good one.
How do we thank the volunteers who woke up EARLY on Saturday morning to help with registration, breakfast for the riders or who headed to the first pit stop? How do we thank the terrific volunteers standing at HOT pit stops and with unflagging warmth and good humor, filling water bottles and assisting exhausted riders?
How do we thank the person who was in one of our SAG vehicles and found our 4-person riding team after we missed a turn? He found us; made sure we were on the correct route; and insisted on filling our water bottles with cold water.
How do we thank the teenagers who helped wash out the coolers, wiped them down and then loaded them onto the truck at the end of the day – when the temperature was about 95 degrees and the temperature in the truck was even higher?
I could go on but you get the picture.
Well we send out thank you notes and we ask for feedback for the next year’s Ride. But I guess that the biggest thank you comes with the understanding that this year’s Ride was a terrific success. In spite of very challenging weather (from torrential rain and lightening to 95 degree temperatures), we doubled the number of riders, added new routes and achieved a successful event with 450 tired but healthy riders and 150 greatly appreciated 
volunteers.
We will also exceed last year’s fundraising, money that supports the cutting edge research grants program of the Alzheimer’s Association.
PermalinkWant a Job?
Written by: Paul Raia, PhD | July 19, 2011 | Filed Under Living with Alzheimer's
I just read an article that began with a mock help wanted ad, and I am paraphrasing here:
Wanted family caregiver to provide 24-hour care to a difficult Alzheimer’s patient with diabetes, heart disease, arthritis and who is not able to walk without assistance. She needs assistance with all aspects of daily living, toileting, eating, bathing, walking, dressing, taking medications, etc.
No pay. 
No benefits. No rewards. No thanks.
Yes, it is hard work, but millions of family caregivers show up to work every day. They do it for the most part not out of guilt, not because it is expected, not because it is particularly rewarding, but they do it out of love, the purist kind of love that needs no thanks. Some family caregivers, the enlightened ones, see the act of caring as a gift the person with dementia gives to them—an opportunity to live their love for another. No pay, no rewards, no benefits, no thanks?
Not always.
I know the article was pointing out how we as a society discount the significance of family-provided care for elders and how, if not for family care, our health care system would be bankrupt. I get that. I would argue though, that because of family caregivers living their love for those with dementia, we as a society are still far from moral bankruptcy.
PermalinkWarning Clouds
Written by: Jim Wessler | July 8, 2011 | Filed Under Alz Things
OK, the fact that it felt increasingly humid and there was water on the streets should have made me pause. And yes, the fact that the clouds became darker and darker should have triggered a warning signal. But by the time it started to pour on my early morning training ride and distant thunder and lightning were observed, I was at the halfway point of my 16-mile loop. All I could do was return. And I did get home safely although if it is possible to be wetter than wet, that would be an apt description as I “swam” back to my home.
I am training for the July 23 Memory Ride as I will be joining my son in the Century (100 mile) distance. My wife is riding and possibly my daughter will join us as well. We ride to support the work of the Alzheimer’s Association, both our programs and services that assist families and our cutting edge research initiatives. We also ride in memory of my dad who was diagnosed with Alzheimer’s several years before his death in 2005.
So this brings me back to warning clouds. Although I ignored the weather this morning and was drenched, we can’t afford to ignore the warning signs of Alzheimer’s. With 10 million baby boomers poised to develop Alzheimer’s, we must accelerate our progress on the scientific front. The only way to do this is to raise the volume, raise the funds and engage the American people in the crisis of Alzheimer’s.
So if you can’t join our family for Memory Ride; tie up those sneakers and join us this fall in the Walk to End Alzheimer’s. We need your help………failure is not an option.
Permalink
We Should be Outraged
Written by: Jim Wessler | May 3, 2011 | Filed Under Living with Alzheimer's, Public Policy
The report made public this week regarding the abuse of at least a dozen residents at a nursing home in Topsfield, Massachusetts, some of whom apparently have dementia, once again raises the question: why doesn’t Massachusetts have adequate regulations and training for dementia care? Those with Alzheimer’s and dementia are the most vulnerable populations among nursing home residents, yet the protections to keep them safe are sorely lacking.
Our hearts go out to the many families who had loved ones who were victimized. And to the victims, we say “we need to do a better job for you.”
We know that most direct care workers in nursing homes are honest, hard working and provide quality care. However, bad care does happen and vulnerable residents need assurances that someone will protect them.
For the past six years, the Alzheimer’s Association has proposed that Massachusetts enact legislation that would require minimum standards of care and training for staff in nursing home dementia special care units. In addition, the Alzheimer’s Association has proposed that there be minimum dementia training requirements for all direct care staff working in nursing homes. Families cannot wait any longer for protection from care that can range from careless disregard to downright criminal.
The Executive Office of Elder Affairs is co-chairing a steering committee with the Alzheimer’s Association to create an Alzheimer’s State Plan that addresses wide ranging aspects of diagnosis, education, safety, care and support. The finished plan is expected to call for the establishment of minimum standards for dementia care in the state’s nursing homes.
Massachusetts is one of only six states in the nation with no regulatory oversight of specialized dementia care in nursing homes. What is even more illogical is that Massachusetts has enacted special protections for dementia care in assisted living and is in the process of developing training and practice equirements for home health aides caring for people with dementia. Why are nursing home residents—like those in Topsfield–left to fend for themselves?
Alzheimer’s is one of the most significant health care challenges facing us. 5.4 million people in the U.S. have Alzheimer’s; in Massachusetts, 120,000 people have Alzheimer’s. They and their families are waiting for assurance that the quality of their care will no longer be in doubt.
We should all be outraged about the alleged incidents. Our enforcement officials should prosecute to the full extent of the law. And our elected officials should enact legislation to establish standards for care.
PermalinkStress: a Risk Factor for Alzheimer’s
Written by: Paul Raia, PhD | April 15, 2011 | Filed Under Living with Alzheimer's, Research
Amyloid beta, a.k.a., A-Beta, is a small protein that in the case of Alzheimer’s disease is considered to be “the bad guy.” Normally when A-Beta does what it is supposed to do in the brain cell, it folds itself up in a precise way and then it dissolves. However, when it goes awry it doesn’t fold itself up, just in the right way, and it forms insoluble sticky plaques in brain cells causing the cells to die.
Recent research at the University of California at Irvine has shown that stress caused by worry, trauma, inflammation or 
pain produces a hormone made from cholesterol called cortisol. Cortisol causes the A-Beta to misfold itself and then to clump into the deadly plaques.
So stress, according to this study, is a contributing factor in developing Alzheimer’s disease. This finding fits in nicely with another recent study that showed spouse caregivers of Alzheimer’s patients have a higher than expected incidence of the disease themselves. And now, we can logically assume that the stress associated with care giving, in and of itself, is a risk factor for Alzheimer’s disease.
There is now yet another reason for caregivers to seek out a support group to help reduce the stress.
PermalinkWhy do we want to know?
Written by: Paul Raia, PhD | April 8, 2011 | Filed Under Alz Things, Living with Alzheimer's, Research
On what I hope was the last snowy evening of the season—last week–an audience of more than 350 came out to listen to three world-class researchers talk about their quest to find “bio-markers,” biological indicators, such as something that can be seen in the blood, or spinal fluid, or in sophisticated scanning of the brain, that when looked at together can reliably detect the very earliest signs of Alzheimer’s disease. Scientists agree that the early pathology of Alzheimer’s disease, that is, subtle changes in the brain, begin long before, perhaps 15 years or more before, symptoms appear.
During the question and answer portion of the program a person with early-stage Alzheimer’s asked the panel of presenters the essential, elephant in the middle of the room question. I’m paraphrasing here:
“If you don’t have a cure for the disease why would you want to detect it decades before any symptoms appear?”
The panel’s answer was that we may already have a cure for Alzheimer’s and not know it because we have only introduced drug interventions in clinical trials on people who were well along in the disease. It may be that one of the drugs that currently exist will work to halt the subtle changes in the brain long before the presentation of even the earliest symptoms. Isn’t this an exciting prospect? The very thought that we may already have a cure and not know it, made the ride home in the snow storm blissful.
PermalinkIs it possible to make Alzheimer’s worse?
Written by: Jim Wessler | April 6, 2011 | Filed Under Public Policy
It’s an odd question, but is it possible to make Alzheimer’s, an incredibly challenging disease, worse? And, the answer from the actions of our elected officials seems to be, yes. In Massachusetts, the Governor and Legislature are considering cuts to Adult Day health Services that will essentially eviscerate this service, leading most providers to just shut their doors. And in New Hampshire, the House just passed a 
budget that eliminates the Alzheimer’s respite program and threatens the existence of the State’s Service Link program, a key support for families caring for an infirm parent.
In the national focus on budget cuts, the resulting human causalities are often ignored. When adult day health programs close, how are working families supposed to provide care for their loved one with Alzheimer’s? When a state’s Alzheimer’s respite program is just eliminated, where are the 900 families who depend on this program supposed to turn? When the National Institutes of Health continue to dramatically underfund research on Alzheimer’s, how are we going to develop treatments to this devastating disease.
Our state and federal government works for us. There are real human lives that depend on a competent and responsive public sector. When budget cuts as a principle of governing supersede the need to assure a basic quality of life for those unable to support themselves, then it’s time to reevaluate our priorities. Do we as a society, truly believe that someone with a progressive and terminal disease has to figure out on their own, how to live with dignity and quality of life? Do we as a society, really want to state, proudly, that there is no public role to help overwhelmed caregivers who are sapped of health, wealth and even the will power to continue?
It’s time to speak up, step out, and paint a different picture; of a society and government that values human lives and believes in a public responsibility to help our nation’s families enjoy a basic and dignified quality of life.
PermalinkThis is my grandmother
Written by: Taylor Gould | March 4, 2011 | Filed Under Living with Alzheimer's
When my grandmother was diagnosed with Alzheimer’s disease, I was 12, too young to understand. As the distance between who she was and who she was turning into became greater, I was left still wondering the significance of it.
I knew, from childish jokes in the backseats of school buses that Alzheimer’s made people forgetful. I knew it wasn’t anything to celebrate. I even got a bracelet that said “Mindstrong,” because it’s easy to jump on a bandwagon when you don’t know its destination.
I had seen its effect in the face of my father, whose life took a backseat to preserving his mother’s memories. He made a picture book, with all of our names and faces in it and he put it on the table next to where she drank her tea in the morning.
When I really began to understand Alzheimer’s disease, however, was my high school graduation party.
I was nervous, I admit, having all of my friends over, a new girlfriend, a few schoolteachers. I had in recent recollection a story I’d overheard my dad telling my mom about Grammy acting with such hostility, vocal volatility, in a hospital where she was having brain scans done. I didn’t want that for my graduation party. I didn’t want to be embarrassed. I didn’t want her to make a scene.
She was perfect. Kind, open, meeting all sorts of new people. She was the grandmother I had grown knowing: an exceptionally warm person with a heart wide enough to catch everyone in a room within its wings.
I told my mother, “Grammy is doing so well today. I’m glad.”
And then, just moments later, she approached me.
“Today is really wonderful, isn’t it? It’s nice to have everyone here.”
I felt a welt in my throat. The bits and pieces of her, I thought, that had once left have returned. This is my grandmother.
And then she said, “I just wish Taylor could be here.”
At this point in my life, I still wear my Mindstrong bracelet every day. I have for three years now. I have witnessed the disease, and I have felt the disease. It’s true what they say, that if one person in a family gets it, you all are affected.
I can’t pretend to wax poetic. It would be wrong. It’s poetry lies in how simply stated it is: Alzheimer’s disease is a life changing thing, for everyone involved.
I don’t know its future; I don’t know what cures might be found, what inhibitors, what medications—I know none of that.
I do know a woman, a kind, loving woman, who used to be my grandmother. She is there in form, in structure, but I have been missing her for a very long time now.
Permalink