Tackling Alzheimer's Disease
http://thedianerehmshow.org/shows/2012-01-18/tackling-alzheimers-disease
Alzheimer’s disease affects nearly five million Americans a year. But that number is expected to triple in coming years as our population ages. The cost of treating sufferers is also predicted to rise – to $1 trillion by 2050. For many years, Alzheimer's struggled to achieve the funding levels of more prominent diseases. And breakthroughs have been few and far in between. Now, the White House has brought together a team of experts to develop a national plan of action for the illness. Join us to discuss what the new plan will mean for sufferers, their families and the medical community.
Guests
Robert Egge
vice president of public policy at the Alzheimer’s Association
Dr. Scott Turner
professor of neurology and Director of the Memory Disorders Program at Georgetown University Medical Center
Deborah Rubenstein
director of consultation, care management and counseling, Iona Senior Services
Howard Koh
Assistant Secretary for Health, Department of Health and Human Services
Comments
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Thank you for addressing this very important topic. My mother has Alzheimer's Disease and I have done my best to help her. However, I also have a career and must take care of myself. I am only to grateful that there are nursing home facilities with the people and expertise to help my Mom during this difficult time. Why is it just assumed that we all want to take care of loved ones at home and not get expert care from professionals. I see my Mom communicates better with people that know far more about the different stages of the disease and how to care for her. Please also address the issue that daughters and daughters-in-laws are naturally expected to be the caregivers in the family while sons and brothers pretend the duty is taken care of for them. Excuses that distance or lack of finances are poor excuses to make one family member bear the situation.
A diagnosis of Alzheimer's disease changes everything and nothing is ever the same. My husband, a former Dean of the College of Education at the University of Maryland, suffered from Alzheimer's disease for ten years before his death two years ago.
Our family struggled to patch together a system of support, to cope with issues of physical and emotional care, financial and legal planning, transportation and driving, in-home care, day care and finally assisted living. It felt as if I we were on shifting sand, because as soon as I had a care plan in place, my husband's needs changed, and I had to seek yet additional solutions to our situation, and I'd have to convince him to accept the changes.
We must transform the way we support patients and families caught in the tangles of this disease. Thank you for addressing this important issue. I also thank the Alzheimer's Association for the essential work they are doing.
Suzanne Carbone
An admirable topic, but DR Show should spend some time on SOPA and PIPA today.
I respectfully disagree. SOPA and PIPA are taking too much of the news cycle and, in my opinion, too much of Congress's time. There are people in dire economic straits in the US... and our elected officials are concerned with the profits of media corporations.
As we speak, my father who has non-specified dementia is in the hospital after being evicted without notice from his assisted living facility on Martin Luther King Day because they weren't able to handle his behavior issues. For anyone who doesn't already know, nursing homes cost considerably more per day than assisted living facilities and are much higher than the $170/day allowed by Dad's long term care insurance policy. Families not able to afford nursing home care turn to assisted living where their loved ones are cared for hourly employees who are not trained in dementia care and who are not licensed medical practitioners. Medication is administered by "med techs" who are assigned to administer medication after just a brief training. I'm hoping the national plan will tackle the issue of families needing specialized dementia care who may not yet need or cannot afford a full nursing home setting.
Barbara Stratton
Baltimore, MD
The American Cancer Society has been criticized for putting much more emphasis on treatment than prevention, thus benefitting pharmaceutical companies.
I hope the approach to dementia here will be on affordable methods of prevention, rather than expensive treaments.
The link to diabetes is interesting and could point to nutritional links.
My grandparents who grew up on whole foods, were independently living and sharp witted until the day of death, in mid-nineties. My own parents are already experiencing memory loss in the mid-eighties.
Has any thought been given, in research, to the possibility of psychic connection. I would be skeptical except for one startling example. My mother could not recognize a pencil or a photo. Yet one day, on a Monday afternoon, she woke from a nap and said, "I can't stop him. He won'l listen to me." The caregiver asked who -- and she said, "My brother." On Tuesday we received word her brother had died ... on Monday afternoon. Because of that I tested psychic communication with her for the next year and am writing about that. If the person who HAD Alzheimer's -- and their loved ones -- felt the love connection was not completely severed, it would affect the tremendous fear that surrounds this. I am NOT saying any of this as though it is science -- the realm of love and psychic connection to each other is simply under-explored and often disregarded -- yet MIGHT actually exist.
I really appreciate the discussion on today's show. I would, however, like to remind everyone that this is not only a disease of septa- and octa- genarians. There is a growing population of people being affected by what is being termed 'early onset Alzheimer's'. This can affect people as young as 40 yrs of age, and perhaps even more drastically alter the lives of those affected by it as well as the loved ones and care givers who's lives are being torn apart in these situations. I would love if you would ask your guests to address the issue of Early Onset Alzheimer's and resources available to people affected by this disease at this early point in their lives.
Thank you.
What about diet? What is the incidence of Alzheimers in the Seventh Day Adventist community?
As one who has a parent in advanced stages of Alzheimers, 4 years in a nursing home, and my other parent "okay" mentally, I feel the way we are allowing the "existence" of these shells of humans to continue to "live" is nothing short of criminal. I visit weekly & see the devastation firsthand & close up. If not for all the medications, the disease will take it's course naturally, more quickly. This is one disease, unlike the ravages of cancer, that the spouse & family truly suffer more than the individual afflicted. I feel my mother is already dead & is being kept alive, no different than being on life support. However, my Dad has completely lost his life & his entire days revolve around my mother & it is taking a serious toll on his life. Until there is a cure, we need to take a more compassionate approach, particularly when the disease reaches it's advanced stages. Now, we are only prolonging the inevitable with a long lingering, but not physically painful, death, while destroying the lives of the well survivors.
Diane,
You mentioned "stimulation" as a way to keep the brain active. I assume you meant it as a way to delay the effects of this disease.
However, I remember reading a NY Times article that revealed research that showed that such "stimulation" does not show improvement or delay at all. Can your guests discuss this?
-Tony
Thank you for highlighting this disease. I'd be interested in hearing what your guests can tell me about the research into the link with Alzheimer's and Lyme disease. Dr. Alan MacDonald was the pioneer in this research and found a 70% link with Lyme in the brains of Alzheimer patients. Now that Dr. MacDonald has himself succumbed to Alzheimer's I'd be interested to know who is carrying on this important research.
Thank you so much for asking the direct questions that are so often not asked nor answered. You are a magnificent interviewer and information distributor!
Caring for a parent with Alzheimer's/dementia has other side effects that you haven't mentioned--it's almost impossible to restart a career after you've spent time as a caregiver.
I cared for my mother for 2.5 years on a 24/7 basis, and derailed a significant advertising/marketing career.
Trying to come back after being a caregiver is an issue that should be discussed and solutions offered.
Although your guest Deborah Rubenstein mentioned that there are an array of support services available to caregivers, my family fell through the cracks for a variety of reasons--income level, budget cutbacks in non-profits, etc.
It's much tougher on the front than you or your guests would ever know--trust me, I do know.
I'd love to use my marketing experience--honed in New York City and here in Michigan--to help get the message out.
I invite anyone of your guests to contact me.
I'm ready to go to work.
Could your panel talk about the value of brain banking - for those with AD and for those who are unaffected. Thank you.
Cory Livingston, MSW, MPA
Caregiving Coach
Tallahassee, FL
Great discussion... I would like to hear what your guests know about using coconut oil to prevent/treat Alzeimer's. Here is an article speaking to this http://articles.mercola.com/sites/articles/archive/2010/12/13/can-this-n...
I in Cuyahoga Falls, OH
Great discussion... I would like to hear what your guests know about using coconut oil to prevent/treat Alzeimer's. Here is an article speaking to this http://articles.mercola.com/sites/articles/archive/2010/12/13/can-this-n...
I in Cuyahoga Falls, OH
Is Alzheimers happening at the same rate in other countries?
I had a grandmother with it for 20 years, and can tell you the progression is like a book. I experienced it all including her hating me, but in the end when she was in hospice and totally "gone" she would smile at me and I believe she new who I was. It tore the family apart, only the oldest sibling, my stepmother, took care of her out of 6 college grads and 2 doctors and she became extremely resentful. It took her, my dad and myself plus day care to take care of her, who was worth all of it but it ruined my family and I wouldn't wish this disease on my worst enemy. The Medical community needs to fix it!!!
I love your show---I am only 45--and I live in Indianapolis--, in the Summer of 2007 (I thought i had a stroke) and I had terrible migranes--
I think the weather is getting warmer (Global Warming)--the hot weather made my health decline--I was exercising outside--, I almost passed out--
The neurologist---said i had no stroke--but brain atrophy--I was taking allergy shots also and having weird reactions to them....., Can the hot weather we have been having---some effect on alzhemiers--because now the neurologist suggested--that dementia is going to be in my near future.., I heard you on the show thinking of what could be making people come down with this disease more frequently now.., I have to be very careful--i have vertigo now--and I cannot let my blood get to thin--or I faint and I am also worried about actually having a stroke now..
I love your show and they need to come up with prevent treatment and actual treatment that works for alzhemiers.
@Laura: Interestingly, India has significantly lower rates of dementia. Some scientists believe that has to do with their high consumption of Turmeric, a spice that is related to ginger. Some research suggests that turmeric helps remove amyloid plaques, which is a deposit commonly found on the brains of dementia patients.
One tip for struggling caregivers:
There's a nationally renowned Dementia Caregiving Expert named Teepa Snow, who focuses on increasing communication between dementia patients and their caregivers.
She explains her students how a patient with dementia perceives his/her environment, and how to adapt one's own behavior to improve mutual understanding and reduce agitation.
She gives seminars across the country, and I think she has some videos on YouTube as well.
Best wishes to you all!
LeeNicholson wrote:
"I respectfully disagree. SOPA and PIPA are taking too much of the news cycle and, in my opinion, too much of Congress's time. There are people in dire economic straits in the US... and our elected officials are concerned with the profits of media corporations."
That is why you should be opposed to these bills - AND why the issue is so important. You need to educate yourself, Lee. Free speech is at stake.
I am a physical therapist and the only daughter in my family. My mom has vascular dementia. My concern that I've seen is the subpar care some nursing homes and nursing home employees can give. As more and more people will need this care in the future, are there any standards being set for nursing homes to follow in order to better care for these patients? I am hesitant to tie these standards to financial incentives as it seems there are always ways around those incentives to receive the payment and the care does not change. It breaks my heart to hear some of the stories I hear from families and the lack of concern or care given by the nursing homes to patients who too often don't have a voice. Is this what we have to look forward to as we age?
My father-in-law has advanced dementia yet no doctor will diagnose actual alzheimer's disease. He has had scans, psychological evaluation and been to the local alzheimer institute. Another point is the medicaid available will pay significantly more towards his care if he is in a facility than if we were to care for him at home and needed to hire in-home care. We live in Arizona.
Thank you for this topic! My father (58) was diagnosed a year ago with Frontotemporal dementia (FTD or picks disease) and is already in a Dementia ward because he progressed rapidly. I would like to know whether this program will also address other types of dementia and not solely Alzheimers. We have found that most units and drs/nurses have more experience working with Alzheimers patients and are unfamiliar with the specificities that come with other types of dementia. It is frustrating for my mother and I because our best information comes from an ftd forum online, and not from the drs we have been in contact with.
I am glad to hear mention of other forms of dementia. Until ayear ago I didn't realize there was anything but Alzheimers'
I was diagnosed with early onset Parkinson's 10 years ago. Then was diagnosed with cognitive deficits consistent with Parkinson's Dementia a year ago. Had been having problems for several years but was afraid to do the testing. Thought what good would it do.
Finally was having so many problems with many day to day activities, particularly driving, Irealized I should. Exelon oral had little if any effect, but the Exelon patch has made a huge difference. Many people now do not realize I have a problem.
Well, I thought I was emailing you to ask a question, but obviously wasn't. By the time I got a log in and then what I wrote before. I had forgotten my question. Was a good show any way.
I currently take care of my 93 year old mother with moderate Alzheimer's in our home. We are VERY fortunate in that I'm semi-retired with a flexible schedule. We also have enough financial resources to make it possible. Not to mention mom's GREAT sense of humor. That said, it's still ALOT of work and stress!!!! I've heard and read about many, many heartbreaking stories of caregivers of persons with Alzheimer's.
For a country that's put a man on the moon, can we not find a way (as a nation) to AFFORDABLY care for those with Alzheimer's, putting not only them and their care-givers at ease, but all the rest of us who may contract it in the future??
It seems to me that a straightforward solution, involving federal, state and local governements working with family and friends of affected individuals, and involving business partners, when possible, could be enacted. I've sent my proposal in to HHS and my state, and I'll be relentless in following up. Hopefully, we will all see some relief from this crisis!!!!!
Hi Tony! I would say "stimulation" involves many, many things, like consistent social interaction with familiar people, going outside the home on outings such as gym, hair cuts, meals out, and physical activity on a daily basis (walking and gym, as able, 3x/week). Anything stimulating blood flow to the brain is helpful. Music and art are also good. Also, care not to over-medicate is important. So, it's pretty comprehensive, with my mom, it's stabilized her function over the past few years, and she's 93!!
Thank you for a most informative program on AD. My mother was diagnosed 5 years ago. We benefited most from excellent education from the Alzhiemers Assc. and from an all day seminar called Say Yes To The Moment done by Healing Moments at http://healingmomentswebsite.webs.com/
They teach how to be whatever the AD person needs through improvisation. This was challenging but learning these technigues has made it possible to adjust to my Mom's 'place' and not try to make her be in our world. We all have grown closer through this experience, and she is very managable as we do whatever will make her happy in the moment. If she thinks I'm her sister, or it is Christmas in July, that's just fine. She runs the show as long as she is safe.
We also are a part of a PACE program with Summit Elder Care in MA. They are a full service daycare and insurance with Fallon and provided all we need to keep her at home. They consider only her SS income and not that of those she is living with, so Mass Health has paid for everything. Please help get the word out about this invaluable piece of the puzzle.