LTC Bullet: "Elder Rage" is a Hoot
Tuesday, May 20, 2003
LTC Comment: Jacqueline Marcell's unique book "Elder Rage" brings compassion, enlightenment, and strangely enough, side-splitting good humor to the challenge of caring for a loved one with senile dementia. More after the ***news***.
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*** From the "every cloud must have a silver lining" file:
"Synthetic Pot Aids Alzheimer's Patients, Study Finds BALTIMORE, MD --
05/19/2003 -- (Eli Digital) A laboratory version of marijuana's active
ingredient may help people suffering from Alzheimer's disease. That's the
finding of a small pilot study presented last week at the annual meeting of the
American Geriatrics Society. Researchers with the Meridian Institute for Aging
in Neptune, NJ studied the effects of dronabinol, a synthetic version of
delta-9-tetrahydrocannabinol, on nine Alzheimer's patients residing in nursing
homes and assisted living facilities. The results suggest the drug may reduce
agitation and lead to weight gain in Alzheimer's patients. 'In the study,
dronabinol appeared to be safe and effective for these patients,' said lead
investigator Dr. Joshua Shua-Haim. 'The results point to a promising direction
for future research.' The U.S. Food and Drug Administration has already approved
dronabinol for treatment of anorexia in patients with HIV/AIDS and for nausea
and vomiting associated with cancer chemotherapy." Source: LTC Daily
Analysis Briefs, May 13, 2003, prepared by http://www.eliresearch.com/
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LTC BULLET: "ELDER RAGE" IS A HOOT
LTC Comment: Jacqueline Marcell is on a one-woman LTC campaign. She's out to educate Americans on how to provide extended care to a loved one and how to plan and prepare for long-term care if there is still time. She wrote and self-published "Elder Rage," which is reviewed below. She's an "edu-taining" national speaker on dementia and eldercare awareness and reform. She hosts an Internet radio program, where she interviews six health/aging/caregiving professionals every Saturday from 3-5 PM Pacific Time on http://www.wsradio.com/copingwithcaregiving . In fact, you can still listen to her January 11, 2003 interviews with Center President Stephen Moses and HIAA's LTC Director Susan Coronel on "Coping with Caregiving," discussing the importance of early planning for long-term care financing. The show is available for online 24/7 listening-on-demand at: http://126.96.36.199/cart/ProductDetail.asp?PR_ProductID=1020 . Susan is Segment 1. Steve is Segment 6. Learn more about Jacqueline Marcell and her LTC mission at http://www.elderrage.com/ . You can order her book there too.
Jacqueline Marcell, Elder Rage, or Take My Father... Please! How To Survive Caring For Aging Parents, Impressive Press, Irvine, California, 2001, 346 pages, $19.95, available at http://www.elderrage.com/ .
We were searching for the right words to describe this unusual volume when we found them . . . among the dozens of prestigious endorsements provided in the first six pages of the book. Here's a sampling:
"Fellow Baby Boomers listen up! With all the recent breakthroughs in medicine, you may find yourselves caring for your parents for more years than they care for you. Elder Rage will show you how to be an effective caregiver without ruining your own life in the process." Ken Dychtwald, Ph.D., Best-selling Author, Age Wave and Age Power
"Elder Rage works! First, as a riveting non-fiction novel about a daughter's unconditional love for her aging parents. Secondly, as an informational book on caring for the elderly--that solves the mystery of managing difficult elders. You will be helped and you will be touched by this amazing story's heart-line." Robert Stack, Actor
"Delightfully real, often funny, with twists and turns that will have you nodding in recognition, often laughing and sometimes crying. Jacqueline triumphs when she discovers that demented does NOT mean stupid (a concept that is not widely appreciated) and demonstrates that there can still be a good life after dementia, when it is properly managed medically and behaviorally." Rodman Shankle, MS, MD, Neurologist Specializing in Dementia and Co-founder of the U.C. Irvine Alzheimer's Center
We read enough of Elder Rage to certify to the validity of these assessments.
Here's a review, supplied by Marcell herself, which gives a good flavor of the book and its author:
"One in Three will be Affected by Dementia Either in Themselves or a Loved One"
IRVINE CA, April 2003--
If you're caring for elderly loved ones and find the task daunting, then you're in the same position that Jacqueline Marcell found herself. She gave up her career as a television executive, went through 40 caregivers and cried rivers for a year before she succeeded in solving the endless crisis, and tells how in her new book: Elder Rage, or Take My Father... Please! How To Survive Caring For Aging Parents (Impressive Press, $19.95, www.ElderRage.com).
Delivered with a humorous tone to make a tough subject palatable, Marcell relates how she fought through an unsympathetic medical system and endured her "Jekyll & Hyde" father's physical and emotional wrath, until she finally found help for him and her ailing mother. What she didn't understand was that his deeply engrained life-long negative behavior pattern of screaming and yelling to get his way (though never at her before), was becoming intermittently distorted with the onset of dementia, namely--Alzheimer's.
Education is Key
Marcell points out that not everyone becomes aggressive with dementia. She says her mother was sweet and lovely both before and after her Alzheimer's diagnosis, indicating that the disease can manifest itself in many ways. There are many types of dementia, Alzheimer's is just one type, and there's no stopping the progression nor is there yet a cure. Alzheimer's is typically preceded by "Mild Cognitive Impairment" (MCI), which can last five to ten years. 90% will then progress to Stage One Alzheimer's, which lasts 2-4 years. Stage Two lasts 2-10 years (and requires full-time care), and Stage Three, the end, typically lasts 1-3 years.
Statistically families (and many doctors who are not dementia specialists) ignore the early warning signs, because they incorrectly believe that these intermittently odd behaviors are just a normal part of aging and untreatable senility. Marcell says, "By the age of 65 one out of every ten persons has some form of dementia, and by the age of 85 one out of every two. Surprisingly, the fastest growing segment of our population is the 85+ group, and over 50 million Americans are struggling to provide care for aging family members and friends."
Marcell says her mission is to "spread the word about the importance of early diagnosis to the 77 million baby boomers who are so often in denial about eldercare and dementia until they are in a crisis." She wants everyone to know that with the proper treatments and medication, dementia symptoms might be masked and slowed down by 2-5 years, keeping a person independent and in Stage One longer, which is intermittent and mild. "Seeking help early can save families a lot of heartache and money, and save our society the burden of caring for so many elders who decline sooner than need be."
The Alzheimer's Association reports that by delaying the onset of AD for five years, we could save $50 billion in annual health care costs. Even a one-month delay in nursing home placement could save $1 billion a year. Marcell says, "It's really very simple: When your loved one does something that strikes you as illogical or irrational--it is! You don't need to be a Ph.D. to know something is wrong--you need an M.D. who can diagnose it and then treat it properly."
Finally the Answers
Marcell credits the Alzheimer's Association (800-272-3900) for referring her to a geriatric dementia specialist who uncovered her father's early stage Alzheimer's disease. (His regular doctors missed it completely.) Medication was prescribed to slow the dementia down and improve his cognitive functioning (Aricept, Exelon or Reminyl), and then the aggression and (often-present) depression were treated.
After balancing her father with optimal nutrition, as well as Vitamin E, anti-oxidants and anti-inflammatory therapies, Marcell implemented her own "Elder Behavior Modification 101", consisting of rewards & consequences (because his short-term memory was still quite good), and succeeded in turning around his bad behaviors--the majority of the time. When that didn't work she used distraction, redirection, reminiscence and validated his feelings--but discovered that the offer of his favorite ice cream usually worked the best to get him into the shower.
The final key was getting herself into a support group, and getting both parents out of bed ("waiting to die") and enrolled in physical and emotional therapies at an Adult Day Health Care facility--which completely turned their lives around at 80 and 85. Marcell adds, "75% of dementia patients are being cared for at home, and sadly, elder abuse is rising dramatically because families are so unprepared for the frustrations of caring for their elders, who are living longer than ever. She believes that with education and the use of Adult Day Care, the horror of elder abuse can be reduced. She is pleased that the National Center on Elder Abuse published a very favorable review of Elder Rage in their national newsletter.
Also a Self-Help Book
Elder Rage is a combination non-fiction novel & self-help book, with answers to difficult "how to" questions like: getting obstinate elders to give up driving, accept a caregiver, see a different doctor, go to adult day care, move to a new residence--and includes a wealth of valuable resources, websites and recommended reading. The addendum by renowned dementia specialist, Dr. Rodman Shankle, MS MD, "A Physicians Guide to Treating Aggression in Dementia," helps doctors diagnose and treat this troubling aspect of dementia, which can occur in some patients. The bottom line message of both author and doctor is that, "there can still be a good life after a diagnosis of dementia, if it is properly managed medically and behaviorally."
The impressive list of 45 high profile endorsements include: Hugh Downs, Regis Philbin, Dr. Dean Edell, the late Steve Allen, Jacqueline Bisset, Ed Asner, Dr. Bernie Siegel, John Bradshaw, Dr. John Gray, Betty Friedan, Julie Harris, Art Linkletter, Leeza Gibbons, Robert Stack, Dr. Nancy Snyderman/ABC News, Erin Brockovich, Johns Hopkins Memory Clinic, Duke University Center For Aging, Dr. Eric Tangalos/Mayo Clinic, Dr. Rudy Tanzi/Harvard Medical School, Senator John D. Rockefeller IV, and the National Adult Day Services Association--who honored Marcell with their Media Award for her tireless efforts to bring attention to the tremendous value of Adult Day Care.
Hitting a Chord
Marcell's speaking career began when she was invited to replace an ailing Maureen Reagan at the California Governor's Conference for Women, presenting a caregiving seminar with First Lady, Sharon Davis. She now speaks nationally to families and professionals (CEU's & CME's) about eldercare awareness and reform (www.elderrage.com/Events.asp). Having been a sought-after guest on 100+ talk radio & television programs, including CNN and NBC, Marcell decided to launch her own radio program to help caregivers, "Coping with Caregiving", where she interviews experts in the fields of health, aging and caregiving weekly on www.wsradio.com/copingwithcaregiving.
The Book-of-the-Month Club has selected Elder Rage for their Summer 2003 catalogue, and 140 five-star reviews on Amazon.com indicate she's hit a chord with a timely issue, but Marcell says she is most honored that four universities use Elder Rage as required text for their graduate courses in Geriatric Assessment & Management. The National Association of Women Business Owners (NAWBO) is honoring Marcell with their "Advocate of the Year" award at their annual "Remarkable Women Awards" in October 2003.
Numerous publications have featured Marcell, including: Prevention, Woman's Day, Los Angeles Times, San Diego Union Tribune, Kaiser Permanente Journal, Aging Today, Family Therapy Magazine, Institute of Gerontology, Modern Healthcare, Journal of Longevity and The Gerontologist--but it was when she landed the cover story of AARP's Bulletin (circulation 22 million) that Elder Rage catapulted to the fast track of becoming a bestseller.
Marcell emphasizes, "Dementia costs American business over $61 billion a year--largely due (79%) to lost productivity and absenteeism of employees who must take time off work to care for ailing loved ones. Everyone should know the ten early warning signs of dementia and the importance of seeking help sooner than later." She says she learned caregiving the hard way, which is why she wrote her first book, "so that no one would ever have to go through what I did." Determined to make a difference, she says her mission is to, "get to Washington as quickly as possible and help change our eldercare laws." She laughs, "I have an ulterior motive, I don't have children--so I've got to help straighten things out before I get old!"