I recently learned about the ICARA Study. The letters stand for "Investigational Clinical Amyloid Research in Alzheimer's." Here is what I know about it:
Physicians in the United States and Canada are looking for volunteers to participate in the ICARA study, a clinical study evaluating the safety and effectiveness of an investigational drug (bapineuzumab) that may help slow the progression of Alzheimer’s disease.
They are looking for men and women who:
· Are between 50 and 89 years of age,
· Have a diagnosis of mild to moderate Alzheimer’s disease, and
· Have a caregiver who is willing to be involved in the study with them.
Study participants will join more than 2,050 volunteers at 200 study sites across the U.S. and Canada. The study will last up to 83 weeks and all study-related procedures and medication will be provided at no cost. There is no charge to participate in this study. During the study, each participant will be monitored by a medical team, including a physician.
Here is what I don't yet know about it:
Who is sponsoring it? Who is paying for it? Whether the investigators are being compensated by a company that stands to profit from the results. In other words, how scientifically "pure" is the research design and control over the ultimate report of the study findings?
I don't mean to cast suspicion on what may be an incredible opportunity to participate in a significant advance in our fight against one of the main health care scourges of our times: Alzheimer's disease. But I don't know what I don't know and recommend anyone interested in participating to do due diligence before signing up.
For more information about the trial, visit www.ICARAstudy.com or call 1-888-770-6366. Also Google "Investigational Clinical Amyloid Research in Alzheimer's" and surf around. Let's hope this study will yield important results for all of us.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Tuesday, April 28, 2009
Monday, April 20, 2009
Is Long Term Care Insurance Worth The Price?
That depends. It seems to me that if you've seen one long term care policy (ltcp), you've seen just ONE. While many of the features are becoming more standardized among insurers, there may still be important differences in benefits from policy to policy.
Here's what happened with my mother. She had a bias against anything that contained the words: "nursing home." Not an unusual bias among aging loved ones. Anyway, Mom decided to let a salesman sell her a home care policy, one that limited benefits to services delivered to her in her home. In return for a rather substantial premium (she was in her 70's when she purchased this policy--a time when premium rates become exhorbitant), Mom thought she'd receive skilled nursing care, PT/OT/Speech, custodial, incontinence, and related services (if she ever needed them) IN HER HOME.
Try as I might to persuade her to buy a broader policy for only a litte bit higher premium, she balked. "I'm never going to a nursing home," she said. "So why pay for something I'll never need."
Fast forward a few years to when Mom, in the early flowering of her dementia, moved into a home for the aged. Not a nursing home, but congregate housing for seniors. Gradually her ability to independently dress, toilet, be medication compliant, transport herself, and so forth, decreased and she needed fee for service assistance from specialized caregivers. Guess what? After years of paying premiums, her insurer refused to pay for these services. Why? They took a very narrow definition of the word "home" and decreed that a "home" for the aged did not qualify. To collect on her policy, Mom would have to be housed in her own house.
Turned out there was nothing we could do. I complained that her "home for the aged' was, in fact, her current home and that it was not a nursing home. The insurer didn't care. They had fond a loophole to avoid paying and they weren't going to budge.
The lesson, of course, if you are interesed in "ltcp's" for yourself or a loved one is to carefully read, analyze and compare policies from many insurers, and especially to study the small print. Easier said than done but not impossible. Very time consuming, but well worth the time.
This kind of coverage is not for everyone. There are some good sources of information on the web, in Consumer Reports, and elsewhere that will help you decide if it's right for you. My message, though, (and my mother's, if she were able to do it over again) is to be very, very careful and to make sure you know exactly what it is you may be buying. As with everything else, let the buyer beware.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Here's what happened with my mother. She had a bias against anything that contained the words: "nursing home." Not an unusual bias among aging loved ones. Anyway, Mom decided to let a salesman sell her a home care policy, one that limited benefits to services delivered to her in her home. In return for a rather substantial premium (she was in her 70's when she purchased this policy--a time when premium rates become exhorbitant), Mom thought she'd receive skilled nursing care, PT/OT/Speech, custodial, incontinence, and related services (if she ever needed them) IN HER HOME.
Try as I might to persuade her to buy a broader policy for only a litte bit higher premium, she balked. "I'm never going to a nursing home," she said. "So why pay for something I'll never need."
Fast forward a few years to when Mom, in the early flowering of her dementia, moved into a home for the aged. Not a nursing home, but congregate housing for seniors. Gradually her ability to independently dress, toilet, be medication compliant, transport herself, and so forth, decreased and she needed fee for service assistance from specialized caregivers. Guess what? After years of paying premiums, her insurer refused to pay for these services. Why? They took a very narrow definition of the word "home" and decreed that a "home" for the aged did not qualify. To collect on her policy, Mom would have to be housed in her own house.
Turned out there was nothing we could do. I complained that her "home for the aged' was, in fact, her current home and that it was not a nursing home. The insurer didn't care. They had fond a loophole to avoid paying and they weren't going to budge.
The lesson, of course, if you are interesed in "ltcp's" for yourself or a loved one is to carefully read, analyze and compare policies from many insurers, and especially to study the small print. Easier said than done but not impossible. Very time consuming, but well worth the time.
This kind of coverage is not for everyone. There are some good sources of information on the web, in Consumer Reports, and elsewhere that will help you decide if it's right for you. My message, though, (and my mother's, if she were able to do it over again) is to be very, very careful and to make sure you know exactly what it is you may be buying. As with everything else, let the buyer beware.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Sunday, April 12, 2009
Are You Confused by Medicare Rules?
If you, like most people, sometimes have trouble dealing with all the arcane rules and regulations of Medicare, there's good news. The Medicare Rights Center (MRC) has been helping people with Medicare understand their rights and benefits since 1989.
In their own words (see their website: http://www.medicarerights.org/): "The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.
In their own words (see their website: http://www.medicarerights.org/): "The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.
Do you need help with navigating the Medicare system? Are you worried about gaining access to the quality care you deserve? MRC claims to be the largest and most reliable independent source of Medicare information and assistance in the United States.
Disclosure: For a time I was a member of MRC's Consumer Action Board, so I have a positive bias about the good works this organization represents. But they need to be better known, in my opinion.
I hope all of you, whether over 65 and receiving benefits, representing a loved one who is enrolled, or looking forward to your own participation in Medicare~whatever your situation~I urge you to surf over to their website now and get to know what MRC has to offer.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Friday, April 3, 2009
Have You Read Memory Lessons?
No? Well, you should. "Memory Lessons, A Doctor's Story," by Dr. Jerald Winakur, is (in the words of its press release) "an honest and courageous account of his father's last years, the life he slowly forgot, and what a family faces when dementia begins destroying memory after memory, ability after ability."
I've just finished this book and must say that the press release doesn't do it justice. It is a much bigger and better book even than are expressed by the superlatives of the PR, and it should be required reading for all caregivers.
When I wrote my memoir, "Dementia Diary, A Caregiver's Journal" I believe I was the only man at the time to have published this kind of portable support system for caregivers of Alzheimer's and other dementia disease sufferers. We all know that most caregivers are women, but we tend to forget that large numbers of men are also the sole caregivers to demented parents or spouses. The outpouring of positive comments I receive regularly from both men and women readers reinforces my belief in having male perspectives about caregiving widely available in published form.
So men caregivers need a voice in the book market place too and, until recently, "Dementia Diary" was alone in providing it. Now we also have "Memory Lessons," and what a powerful voice it is. Dr. Winakur brings the perspective of a physician, an internist and geriatrician, to the role of a caregiving son. What a combination! It belongs on your bookshelf (next to "Dementia Diary", of course).
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
I've just finished this book and must say that the press release doesn't do it justice. It is a much bigger and better book even than are expressed by the superlatives of the PR, and it should be required reading for all caregivers.
When I wrote my memoir, "Dementia Diary, A Caregiver's Journal" I believe I was the only man at the time to have published this kind of portable support system for caregivers of Alzheimer's and other dementia disease sufferers. We all know that most caregivers are women, but we tend to forget that large numbers of men are also the sole caregivers to demented parents or spouses. The outpouring of positive comments I receive regularly from both men and women readers reinforces my belief in having male perspectives about caregiving widely available in published form.
So men caregivers need a voice in the book market place too and, until recently, "Dementia Diary" was alone in providing it. Now we also have "Memory Lessons," and what a powerful voice it is. Dr. Winakur brings the perspective of a physician, an internist and geriatrician, to the role of a caregiving son. What a combination! It belongs on your bookshelf (next to "Dementia Diary", of course).
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Monday, March 23, 2009
Have You Heard About Ruby's Bequest?
As you know, I sometimes make a point of reporting about other blogs and sites that are making a unique contribution to caregiving. I recently learned about a project you might be interested in. Basically it’s a virtual-reality project called Ruby’s Bequest, sponsored by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF) which seeks to develop solutions to the imminent care-giving crisis.
Experts are predicting that, in the near future, there will be shortages of paid care-givers and direct service providers, shortages in government resources to assist people who use care services, and an influx of people who will need said services as more Boomers with disabilities start aging, and as more Boomers start aging into disability.
Ruby’s Bequest is a story-telling project which aims to provoke a massive brainstorming session amongst all its participants. During the course of the project, participants will be presented with various future scenarios containing various care-giving related problems. They will then have to put their heads together and imagine creative solutions to those problems.
The end result of the project will be a compendium of novel ideas and solutions to the near-term problems associated with care-giving and caring in general. Hopefully it will also serve as the beginning of a conversation about a new, more holistic and sustainable way to look at the role of caring in society.
The creator's of Ruby’s Bequest state that:
- it is a “massively multi-player future forecasting role-playing experience” designed by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF).
- it is for people with disabilities and people without disabilities alike.
To look at the website go here: http://www.rubysbequest.org
- it is a way of crowd-sourcing for innovative solutions to challenges facing the care-giving community.
- it takes place in the fiction town of Deepwell, USA, where a cast of characters (played by IFTF operators) interacts with online participants (the public) and gives them a series of “caring challenges” to overcome.
To find out what’s going on in Deepwell, go here: http://www.rubysbequest.org/faq.aspx
- it requires game participants to send in their suggestions and ideas for how to solve the problems posed by each “caring challenge”, either via email, telephone, or video message.
What a fun and challenging way to deal with our very serious subject!
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Experts are predicting that, in the near future, there will be shortages of paid care-givers and direct service providers, shortages in government resources to assist people who use care services, and an influx of people who will need said services as more Boomers with disabilities start aging, and as more Boomers start aging into disability.
Ruby’s Bequest is a story-telling project which aims to provoke a massive brainstorming session amongst all its participants. During the course of the project, participants will be presented with various future scenarios containing various care-giving related problems. They will then have to put their heads together and imagine creative solutions to those problems.
The end result of the project will be a compendium of novel ideas and solutions to the near-term problems associated with care-giving and caring in general. Hopefully it will also serve as the beginning of a conversation about a new, more holistic and sustainable way to look at the role of caring in society.
The creator's of Ruby’s Bequest state that:
- it is a “massively multi-player future forecasting role-playing experience” designed by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF).
- it is for people with disabilities and people without disabilities alike.
To look at the website go here: http://www.rubysbequest.org
- it is a way of crowd-sourcing for innovative solutions to challenges facing the care-giving community.
- it takes place in the fiction town of Deepwell, USA, where a cast of characters (played by IFTF operators) interacts with online participants (the public) and gives them a series of “caring challenges” to overcome.
To find out what’s going on in Deepwell, go here: http://www.rubysbequest.org/faq.aspx
- it requires game participants to send in their suggestions and ideas for how to solve the problems posed by each “caring challenge”, either via email, telephone, or video message.
What a fun and challenging way to deal with our very serious subject!
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Thursday, March 12, 2009
CAN COCONUT OIL HELP ALZHEIMER'S?
According to an article in the October 29, 2008, issue of the St. Petersburg (Florida) Times, it may be able to help. Possibly quite a lot.
Times correspondent, Eve Hosley-Moore, writes about Dr. Mary Newport's husband Steve, whose results in an early Alzheimer's test improved after adding coconut oil to his diet.
As her husband's condition deteriorated, Dr. Newport (a neonatologist) learned about a new medication undergoing clinical trials. Its primary ingredient is an oil composed of medium chain triglycerides known as MCT oil. She also learned that this medication derived its MCT oil from non-hydrogenated coconut oil.
When Steve Newport was not accepted for a clinical trial using MCT oils, Mary Newport went to a health food store and purchased commercially available non-hydrogenated coconut oil. The next morning she stirred two tablespoons of coconut oil into her husband's oatmeal. The results for Steve were amazing. To find out more about how Steve Newport improved I recommend reading the entire article which can be found at the following URL at Tampabay.com:
http://www.tampabay.com/news/aging/article879333.ece
Would coconut oil help every dementia sufferer? That's what the clinical trials are trying to determine.
The article also stresses the importance of consulting a physician before trying coconut oil at home. One expert pointed out that eating too much of one type of fat can actually be dangerous.
Everyone involved, including Dr. Newport, understands the need for additional research. Nevertheless, she is happy with the way her husband has responded so far, and she wants to share the good news.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Times correspondent, Eve Hosley-Moore, writes about Dr. Mary Newport's husband Steve, whose results in an early Alzheimer's test improved after adding coconut oil to his diet.
As her husband's condition deteriorated, Dr. Newport (a neonatologist) learned about a new medication undergoing clinical trials. Its primary ingredient is an oil composed of medium chain triglycerides known as MCT oil. She also learned that this medication derived its MCT oil from non-hydrogenated coconut oil.
When Steve Newport was not accepted for a clinical trial using MCT oils, Mary Newport went to a health food store and purchased commercially available non-hydrogenated coconut oil. The next morning she stirred two tablespoons of coconut oil into her husband's oatmeal. The results for Steve were amazing. To find out more about how Steve Newport improved I recommend reading the entire article which can be found at the following URL at Tampabay.com:
http://www.tampabay.com/news/aging/article879333.ece
Would coconut oil help every dementia sufferer? That's what the clinical trials are trying to determine.
The article also stresses the importance of consulting a physician before trying coconut oil at home. One expert pointed out that eating too much of one type of fat can actually be dangerous.
Everyone involved, including Dr. Newport, understands the need for additional research. Nevertheless, she is happy with the way her husband has responded so far, and she wants to share the good news.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Wednesday, February 25, 2009
Did You Ever Feel This Way?
Two poems from "Dementia Diary" written while Mom was still alive. Ten years separated the writing of these verses during which she surprised everyone not only by surviving, but also by becoming gentler and more loving year after year. She's gone now, but the feelings that motivated the writing remain fresh and new. I hope they are meaningful to you too.
1993
It's downhill now and going fast.
I don't know how long she can last.
I picture her in decades past;
And I deny the truth.
She was a woman smart and bright,
Whose energy gave off a light.
I picture her all dressed in white;
And I deny the truth.
Her beauty gone, her judgment lost.
Her affection for me now is forced.
She's terrifying when she's crossed;
And I deny the truth.
She's widowed now and all alone.
She sets a self-destructive tone.
It's hard to love this angry crone;
And I deny the truth.
I grieve for who she was when I
Was young and did not have to lie.
So many memories to untie;
And I deny the truth.
The truth is that she soon may die;
And then I'll have to learn to cry;
And also have to face this lie,
And not deny the truth.
2003
The truth is that she did not die.
She was not ready to say goodbye;
But like a fairy butterfly
she makes me face the truth.
From her cocoon she struggled out
not knowing what her life's about;
too frail to rage and rant and shout.
She makes me face the truth.
She's gentle now, her anger gone,
she's sweet and kind, a paragon
who's loved and praised by everyone.
She makes me face the truth.
Her memory is very weak
as is her shrunken bent physique.
Her voice is raspy. When she speaks
she makes me face the truth.
She can't recall her family,
and friends she knew will ever be
gone, forgotten, absentee.
She makes me face the truth.
The truth is that I miss the days
she made me crazy with her ways.
This cheery cherub's face portrays
a stranger's unknown truth.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
1993
It's downhill now and going fast.
I don't know how long she can last.
I picture her in decades past;
And I deny the truth.
She was a woman smart and bright,
Whose energy gave off a light.
I picture her all dressed in white;
And I deny the truth.
Her beauty gone, her judgment lost.
Her affection for me now is forced.
She's terrifying when she's crossed;
And I deny the truth.
She's widowed now and all alone.
She sets a self-destructive tone.
It's hard to love this angry crone;
And I deny the truth.
I grieve for who she was when I
Was young and did not have to lie.
So many memories to untie;
And I deny the truth.
The truth is that she soon may die;
And then I'll have to learn to cry;
And also have to face this lie,
And not deny the truth.
2003
The truth is that she did not die.
She was not ready to say goodbye;
But like a fairy butterfly
she makes me face the truth.
From her cocoon she struggled out
not knowing what her life's about;
too frail to rage and rant and shout.
She makes me face the truth.
She's gentle now, her anger gone,
she's sweet and kind, a paragon
who's loved and praised by everyone.
She makes me face the truth.
Her memory is very weak
as is her shrunken bent physique.
Her voice is raspy. When she speaks
she makes me face the truth.
She can't recall her family,
and friends she knew will ever be
gone, forgotten, absentee.
She makes me face the truth.
The truth is that I miss the days
she made me crazy with her ways.
This cheery cherub's face portrays
a stranger's unknown truth.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
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