Excuses for Inertia
Written by: Paul Raia, PhD | May 9, 2012 | Filed Under Living with Alzheimer's
We all meet family members who suspect something is terribly wrong with their loved-one, but seem unwilling to intervene in a helpful way. This is not denial in the true clinical sense of the word, but rather, a kind of defense mechanism that I call “willful inertia.”
Here are some of the maladaptive rationales for not doing anything that I have witnessed over the years.
I don’t want to upset her routine. Her own routine helps to keep her going.
- She should have the right to make all of her own decisions, even if they aren’t good ones. Elders should have the dignity of choice.
- She is too old to learn new ways of coping.
- If we pay for outside help to come in, or for assisted living or for a nursing home, it will eat up my rightful inheritance.
- If I accept the fact that she has a dementia that has progressed to a significant stage that means I will have to step in and take more responsibility. I can’t do that.
- There is no treatment for dementia so there is nothing I can do.
- I don’t want to acknowledge that she has a significant dementia because it is too embarrassing. Her friends and other members of the family shouldn’t know. This will preserve her dignity.
- I’ll wait until things get worse before I offer help.
- If we acknowledge the dementia, she will lose the will to live.
AND 10, the most common reason for family inertia is: It is just old age. This is normal behavior for someone her age.
Are there other rationales that you have encountered?
I have found that the most successful way of getting families to acknowledge the disease and to provide assistance is through education about the disease itself. The trick, of course, is to get family members to attend an educational program or read an article.
What has worked for you? Share your thoughts and we’ll put them in the next Support Group Leader’s Bulletin.
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No Such Thing as Too Young
Written by: Andy Scherr | February 29, 2012 | Filed Under Living with Alzheimer's
Every day before I left for school, my mom handed me a neatly packed lunch bag loaded with a peanut butter and honey sandwich, barbeque chips, an apple and a Little Debbie Swiss Cake roll. Mom was a stickler for details. She made sure my sister and I woke up at 7:00 am sharp.
Andy Scherr and Amy Scherr
She had a demanding career as an attorney for the state of Maryland, but she made sure our homework was done and that my hockey uniform was ready for the next match. Our home was beautifully decorated, organized and often filled with the laughter of friends and family.
When I came home after college things seemed a bit off. The drawers in the kitchen were a mass of tangled utensils. My mother’s desk, always perfectly organized, looked like a dumpster outside Office Depot. She seemed constantly confused. A trip to the grocery store took hours. Her credit cards were denied because she forgot to pay the bills. She totaled her brand new car and became reclusive from her friends. In 2004, doctors diagnosed her with early on-set Alzheimer’s. She was 52.
She had been an avid reader and gifted writer her whole life. All of the sudden, she was illiterate. She retired from her job as an attorney and spent her days watching Law and Order reruns. She couldn’t remember my fiancé’s name. She dozed off during my sister’s college graduation. It wasn’t long before she needed help eating, bathing and using the toilet.
Alzheimer's has taken a toll.
By 2008 she needed around the clock care and we moved her into an assisted living facility. She was 56 years old. My mother is living proof that Alzheimer’s is not just an elderly disease. It got to her before she even reached her golden years. Alzheimer’s curtailed her career, disrupted her life and precluded her from ever knowing her grandchildren. She will never be able to watch their games or make them lunch.
PermalinkWaiting is Hard
Written by: Paul Raia, PhD | February 13, 2012 | Filed Under Research
When looking at Alzheimer research, I bristle every time I hear the phrase “more research is needed before we can make any conclusions.” I am impatient. I want conclusions. I want an Alzheimer’s cure!
So, when a Case Western Reserve recent study showed that a skin cancer drug, bexarotene, cleared amyloid deposits in mice genetically altered to have the symptoms of Alzheimer’s, and moreover, it restored the mice to previous cognitive abilities, I was elated until I realized much more research will be needed before we can celebrate. God knows that we have cured Alzheimer’s many times over in mice, but then later disappointed in the translation to human subjects.
Understandably though, patients and families are clamoring for the off label use of this cancer drug for Alzheimer’s, after all, it has been cleared for use with humans. Well, first of all, it is not yet known that the drug will clear amyloid in human brains. Second, a safe and appropriate dose has not been determined. Also, nothing is known about the long range effects of the drug in elders. So, more research really is needed before we can get excited. A small human trial, according to the New York Times will start in the next few months. Let’s keep our collective fingers crossed.
PermalinkPicking Up Steam
Written by: Jim Wessler | February 10, 2012 | Filed Under Advocacy, Alz Things, Public Policy
This week we experienced a wonderful congruence of events. At the exact same time that U.S. Health and Human Services Secretary Kathleen Sebelius was announcing a new significant federal investment in research funding and in enhancing care and
support for families living with Alzheimer’s, Ann Hartstein, Secretary of the Executive Office of Elder Affairs was announcing the approval of an Alzheimer’s State Plan by Governor Deval Patrick. While this was not consciously coordinated, all took place within the same 90 minute period.
Both of these announcements were breakthroughs and it was only because of advocates stepping up both on the federal and state levels that we were able to celebrate these accomplishments. Alzheimer’s advocates have been leading the national campaign to secure the passage of the National Alzheimer’s Project Act (NAPA) and these same advocates are pushing for a strong federal plan. On the state level, when it looked like the prospects of securing a Massachusetts state plan were stuck within the executive branch, hundreds and hundreds of advocates contacted the Governor’s office, and these collective voices were heard.
When we were at the Massachusetts State House, dozens and dozens of legislators came by to lend their support for the 200 advocates gathered in the capital. We are raising our voices and our elected leaders are starting to listen. Our government is picking up steam.
PermalinkThe 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.
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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.
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