Friday, March 27, 2009

contacting me

I find it highly ironic when people leave anonymous comments asking how to contact me!
In the sidebar of the blog is a link to my profile which has my yahoo email in it.

Thursday, March 26, 2009

newest figures from Alzheimer's Association

My contact at the Alzheimer's Association just sent me the newest "facts and figures" on Alzheimer's.
Depressing numbers indeed.  Colored emphasis mine.

Washington, D.C., March 24, 2009 Total healthcare costs are more than three times higher for people with Alzheimer’s and other dementias than for other people age 65 and older, according to the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures, released today.
In the new report, total healthcare costs are calculated as per person payments measured from all sources. Medicare payments alone are almost three times higher for people with Alzheimer’s and dementia than for others age 65 and over; Medicaid payments alone are more than nine times higher.
“With the country facing unprecedented economic challenges and a rapidly aging baby boomer population, now is the time to address the burgeoning Alzheimer crisis that triples healthcare costs for Americans age 65 and over,” said Harry Johns, Alzheimer’s Association CEO.
“It is widely understood that addressing health care is key to the country regaining its financial footing,” continued Johns. “And there is no way this can be done without improving Medicare and Medicaid which Alzheimer’s directly impacts. A strategy to immediately confront Alzheimer’s has the potential to save millions of lives and billions of dollars by reducing the burden on Medicare and Medicaid.”  
Average Per Person Payments by Source for Health and Long-term Care Services. For Persons, Aged 65 Years and Older, With and Without Alzheimer’s Disease and Other Dementias, 2004
Average Per Person Payments
Beneficiaries with no Alzheimer’s or Other Dementias
Beneficiaries with Alzheimer’s or Other Dementias
Total payments*
  Medicare payments
  Medicaid payments
  Private insurance payments
  Other sources payments
  HMO payments
  Out-of-pocket payments
  Uncompensated care
* Payments by source do not exactly equal total payments due to the effect of population weighting.
Source: Alzheimer’s Association 2009 Alzheimer’s Disease Facts and Figures
People with Alzheimer’s are high consumers of hospital, nursing home and other health and
long-term care services, which translates into high costs for Medicare, Medicaid and millions of families. As families struggle to survive in a deepening recession and as states grapple with budget shortfalls, Alzheimer’s disease threatens to overwhelm them both. Most people with Alzheimer’s also have one or more additional serious medical conditions, such as diabetes or coronary heart disease. Their Alzheimer’s greatly complicates the medical management for these other conditions and drives up costs significantly.
According to the Facts and Figures report, in 2006:
§  Medicare beneficiaries with diabetes plus Alzheimer’s or another dementia had 64 percent more hospital stays than those with diabetes and no Alzheimer’s, and their average per person Medicare costs were $20,655 compared to $12,979 for beneficiaries with diabetes but no Alzheimer’s or dementia.
§  Medicare beneficiaries with coronary heart disease and Alzheimer’s disease or another dementia had 42 percent more hospital stays than those with coronary heart disease and no Alzheimer’s or dementia, and their average per person Medicare costs were $20,780 compared to $14,640 for beneficiaries with coronary heart disease but no Alzheimer’s or dementia.
With family members providing care at home for about 70 percent of people with Alzheimer’s disease, the ripple effects of the disease can be felt throughout the entire family. According to Facts and Figures, in 2008, nearly 10 million Alzheimer caregivers in the U.S. provided 8.5 billion hours of unpaid care valued at $94 billion. In addition to the unpaid care families contribute, the report also reveals that Alzheimer’s creates high out-of-pocket health and long-term care expenses for families. Out-of-pocket costs that are not covered by Medicare, Medicaid or other sources of insurance are 28 percent higher for Medicare beneficiaries with Alzheimer’s than those without. Individuals with Alzheimer’s and other dementia living in nursing homes or assisted living facilities incurred the highest out-of-pocket costs – an average of $16,689 a year.
Growing Prevalence of Alzheimer’s Disease and Dementia
According to the report, there are 5.3 million Americans living with the disease and every 70 seconds someone in America develops Alzheimer’s disease. By mid-century someone will develop Alzheimer’s every 33 seconds. By 2010, there will be nearly a half million new cases of Alzheimer’s each year; and by 2050, there will be nearly a million new cases per year.
Alzheimer’s is the sixth leading cause of death in the country, surpassing diabetes; it is the fifth leading cause of death among individuals 65 and older. From 2000 to 2006, while deaths from other major diseases dropped -- heart disease (-11.5 percent), breast cancer (-.6 percent), prostate cancer (-14.3 percent) and stroke (-18.1 percent), deaths from Alzheimer’s disease rose 47.1 percent.
“Currently, there are no treatments that can prevent, delay or reverse Alzheimer disease and research funding has been stagnant for the past six years. With the first baby boomers turning age 65 in just two short years – and entering the arena of increasing risk for developing Alzheimer’s – an aggressive plan is needed now to address the threat of this disease. There are too many lives, too little time and too much at stake for anything less,” Johns said.
Implications for States
Demographic trends indicate that the number of affected individuals and families will grow significantly in the years to come, not only having a profound effect on families and health systems but on state budgets as well. In order for states to plan for this rapidly growing population, they must first have reliable information about the characteristics and needs of their residents who are coping with Alzheimer’s or other dementia. An existing survey process is the easiest way to obtain this important information. The Behavioral Risk Factors Surveillance System (BRFSS) is an annual state public health survey done in conjunction with the Centers for Disease Control and Prevention (CDC). Since 2003, some states have added questions about caregiving for people with Alzheimer’s and other dementias in their BRFSS surveys.
The new Facts and Figures report highlights the BRFSS survey findings from the states of Washington and North Carolina. The BRFSS survey allows residents to say for themselves what their challenges are. For example in Washington, 48 percent of the caregivers for individuals with memory loss or cognitive impairment revealed that stress was the greatest difficulty they faced.  Beginning this year, an approved set of family caregiving questions is available for all states to add to their BRFSS survey, and another set of questions on cognitive impairment is being developed for 2010.
Mild Cognitive Impairment (MCI) – An Emerging Issue
Experts believe that early detection of Alzheimer’s disease and early intervention with improved therapies provides the greatest opportunity to delay or stop additional damage to the brain. To that end, the new report highlights the emerging role of a condition known as mild cognitive impairment (MCI). A person with MCI has problems with memory, language or other essential cognitive functions that are severe enough to be noticeable to the individual and others, but not severe to interfere with daily life.
There is consensus within the scientific research community that intervention with any
disease-modifying treatment should occur as early as possible, ideally even before symptoms appear. Individuals with MCI have a higher risk for developing Alzheimer’s disease, but more research is needed to determine why some people with MCI go on to develop Alzheimer’s and why some do not. By participating in scientific studies and clinical trials, individuals with MCI will help to speed progress in finding ways to prevent or cure Alzheimer’s by providing scientists with the opportunity to test new Alzheimer treatments and learn faster whether or not the treatments work.  
“There is a rich, diverse variety of treatment possibilities for Alzheimer’s that scientists are exploring, offering great hope that drugs that may slow or even reverse disease progression could be on the horizon – saving millions of dollars in public health programs,” said Ronald Petersen, M.D., Ph.D, the Alzheimer’s Association’s Medical Scientific Advisory Council Chair. “A national strategy and a sustained commitment to Alzheimer research is what is needed to today to make Alzheimer survivors tomorrow.”
The full text of the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures can be viewed at The full report is scheduled to appear in the May 2009 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 5, issue 3)
The Alzheimer’s Association
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s.
# # #

Wednesday, March 18, 2009

charity book auction to benefit Alzheimer's Society

I recieved this email today.  It's self-explanatory.  If you like books and want to give to charity, here's your chance.

Hi There Bert, Greetings from Dublin.
First off: an excellent- and brave- blog. My own Dad has been an Alzheimer's sufferer for the past nine years. It is a terrible disease, but a topic that I have mostly kept quiet on. It's not something that I have done enough about.
Given your involvement in Alzheimer's and in the world of writing and publishing, I am hoping to enlist your kind assistance. Over the past four years as an unruly online book reviewer, I have collected a healthy bookshelf of first editions signed by their authors. This month, I am working to put some of them into the hands of fellow book fans while raising much-needed funds for the Alzheimer Society of Ireland. I've organized a series of charity auctions through, putting up for grabs my John Banville, Neville Thompson, Claire Kilroy and three others.
The best bit: I'm paying for shipping to anywhere in Europe or North America and my employer matches charitable contributions penny for penny. So double the full winning bid will go directly to the ASI. Full details, FAQs and links to the relevant eBay pages are on If this works out like I hope, then everybody benefits.
If you are interested in publicizing this initiative on your blog, at any time over the course of the series, I will appreciate it! If you don't feel it's a good fit for what you cover, that's fine too. Do keep up the content, your top ranking is well deserved.
With thanks,
Mick Halpin
Webmaster, Critical Mick "Reviews Free of Rules"

Tuesday, March 17, 2009

Alzheimer's-Diabetes link?

A few days ago I wrote about a food designed to help with the diabetes-like aspects of Alzheimer's.  I wondered how diabetes was related to Alzheimer's.  Well, here's the answer.
Doctors long suspected diabetes damaged blood vessels that supply the brain. It now seems even more insidious, that the damage may start before someone is diagnosed with full-blown diabetes, back when the body is gradually losing its ability to regulate blood sugar.....But the latest research strengthens the link, and has scientists asking if diabetes and its related "metabolic syndrome" increase risk solely by spurring brain changes that underlie Alzheimer's _ or if they add an extra layer of injury to an already struggling brain, what (Dr. Ralph) Nixon (of New York University) calls "essentially a two-hit situation."
My dad did not have diabetes. Well, maybe he did once. When he was in the Air Force, after basic training, he had to leave because they diagnosed him with diabetes. He admits that in the Air Force he hated the food and only ate dessert. When he returned home to live with his aunt and uncle, he ate their home cooked food and --tadaa-- no diabetes anymore.
Of course, this link between the two scares me, because I was recently diagnosed with PCOS and part of that syndrome is the possibility of messed-up blood sugar.  Mine is okay but it's being watched.  So now I'm overweight (part of PCOS as well), with a possiblity of my blood sugar going haywire, and I have a first-degree relative with AD--3 risk factors (plus being female).  I might as well put my name on the nursing home list now. 
Alzheimer's/Diabetes link
(link to screenprint of article)

Sunday, March 15, 2009

death of an uncle, grandma is crazy

My grandmother's brother died on Monday. He had a brain tumor, similar to the one afflicting Senator Kennedy, and got it around the same time as the senator.
I'm not sure exactly what happened to my uncle. He had been in bad shape as the tumor progressed, and he was placed in a nursing home in the last few weeks. The nursing home moved him to hospice about a week before he died. But there is so much denial and misinformation floating around in the family--supposedly the hospice was temporary and he was getting better and about to be sent home? That makes no sense to me. And everyone seems so absolutely shocked that he died...a man in his 80's who had been fighting a brain tumor for over a year, maybe even two years.
Seeing my grandmother's reaction to her brother's death makes me really question her sanity and yet I can find no signs of dementia in her, unless she is progressing in a completely different fashion than my dad. She complained throughout the wake about "how hard" it was for her (to sit in the chair? To see her brother dead?) and as usual made it all about her. She refused to come to the funeral; my mom and I went as her emissaries. Nothing I loves better than a high Catholic funeral mass on a Friday afternoon to raise my spirits, followed by a military/Naval funeral rite at a windy cold grave site.
I wasn't at all close to my grandmother's brother--I maybe saw him once a year. His children are all 10-15 years older than me and their children 15-20 years younger than me, so I'm not close to them either. I wouldn't recognize his grandchildren if they were seated near me in a restaurant. I couldn't pick them out of the wake/funeral crowd for the most part. So I didn't grieve or anything, although I cried just because of all the emotion in the air, and being so damn empathic in situations like that.
The most noticeable symptom of my grandma's craziness (for lack of a better word) is an utter absence of hygiene. She doesn't change her clothes (including underwear) more than once a week unless my mom forcibly takes the clothes. She now only "washes" once a week. I use the term "washes" loosely as she doesn't take a bath or shower, just wipes the "dirty" parts of her body. I can't go more than 2 days without washing my hair/body because I feel disgusting, I know I smell disgusting, and it's physically uncomfortable. I don't know how she does it. She never, ever washes her hair, which is plastered to her head with grease and is enough to make a person want to vomit. My mom and I have said we'd wash her hair in the sink or take her to a hairdresser once a month to get it washed and she refuses. I said I'd get her dry shampoo (like powder) and she refuses to use it. How do you reason with a person who is filthy? I hate sitting next to her at meals.
I've spoken to some friends who are nurses and they've made suggestions to try to help my grandma. What would be ideal would be to have someone come in once a week and scrub her head to toe. But Medicare won't pay for that. She is utterly non compliant in all medications, so even if we can get her diagnosed with depression or something, she won't take the pills assigned to her. She refuses to take any medicine because it makes her "sick" and gives her "die rear" (how she insists diarrhea is pronounced) and makes her "dizzy".
Her other personal habits are just as annoying & gross. She makes herself coffee, pours milk into it, drinks a sip, then leaves the almost full cup on the counter. A few hours later she microwaves it, drinks another sip, leaves it on the counter. Eventually, after a day or so, she has finished the cup. She pours new coffee into the filthy cup and starts the cycle again. I want to gag when I see her doing it. If my mother dumps out the putrid coffee and washes the cup my grandma gets angry. She's got all these rules which she invented. The other day I was over there mid-afternoon, downstairs with my mom playing video games. My grandma said she wanted bread and cereal (the pantry is in the basement)--no hurry. An hour later she's at the top of the stairs yelling she needs her cereal and bread NOW! Why? So she can lay out her breakfast for the next 4 p.m. the day before. I don't get that at all. My dad did it too, only he didn't lay his out until around 9 p.m. which isn't bad. But it's not like it takes forever to get out a spoon, bowl and box of cereal in the morning, esp. if you are retired and have no pressing engagements.
I went for a long walk yesterday with a friend whose mom is in a nursing home and getting dementia and we talked a lot about how hard it is to deal with loved ones who no longer have any logic to how they do things. My friend paid her mom's rent for 18 months because her mother insisted she was going to come home--even though the doctor said it wasn't happening. She took in her mother's pets and visits her mom daily, only to be showered with invectives for never visiting and not caring. Now her mother is demanding an expensive funeral spread over 2 states (she is no where near dying, just making her own plans). The mother has no money or life insurance policy to pay for a such a thing, and her daughter is already in debt from paying her mother's bills and partially paying for the nursing home for 2 years--and the nursing home is coming after her for MORE money, even though there is none.
These are the real stories of dementia--add in my friend whose grandpa has dementia and MRSA and there are 3 of us just in my very small social circle--we are approximately 30, 40 & 50 years old.
The government so far hasn't helped regular middle-class people like my friend and me (both of us unemployed). But they give AIG billions of dollars and AIG pays out hundreds of millions in bonuses to the people who ran their business into the ground.
I'm so bitter.

Friday, March 06, 2009

Sad news for a friend

My friend's grandpa, who lives out of state, was diagnosed with Alzheimer's a few months ago. He is also diabetic and now has MRSA in some of his diabetes sores. It's gone systemic, like it did with my dad, and this week they put him in hospice.
All I could tell her was how sorry I am. She is probably not going to be able to see him again before he dies. I'm not sure if that's good or bad...he's unconscious and wouldn't know either way.
Sad day.


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Prescription brain-food to treat Alzheimer's

Got an interesting press release a few days ago. "Axona is a first-in-class medical food for the clinical dietary management of the metabolic processes associated with mild-to-moderate Alzheimer’s. Dispensed by prescription, it targets the metabolic deficiencies and imbalances associated with AD by providing an alternative energy source for brain cells."
Prescription brain food? Interesting.
"Axona addresses a metabolic abnormality of Alzheimer's disease that has not previously been examined. The goal of therapy is to optimize cognitive function. Axona is safe and can be used with other common therapies for Alzheimer’s."
I've read a lot about Alzheimer's and this is the first I've heard of a metabolic component.
"Alzheimer’s disease is a progressive and fatal neurological disease characterized by a substantial decrease in the brain’s ability to metabolize glucose, which is the brain’s primary source of energy. Known as hypometabolism, this defect may contribute to both the clinical and pathological course of the disease. Axona targets the metabolic defects of glucose utilization in the brain by providing an alternative energy source. Axona is digested and metabolized by the liver to form ketone bodies, naturally occurring compounds produced by the body at low levels. These ketone bodies act as a secondary energy source for the brain to help maintain and improve cognitive function."
Hmm  Are these the same ketones produced by a low-carb diet? I've been on Atkins and used the ketone strips to see if I was in the correct zone for weight loss. Is weight loss is a side effect with this food?  I wonder if people who are on low-carb diets in the long term (I have a friend who has been low carb for over 10 years) have a lesser chance of getting Alzheimers?   Is there any relation to diabetes? 
I guess I asked more questions than I answered here.  If my dad was still alive I'd be on the phone to his doctor finding out more information on this, that's for sure.
The company producing this interesting new treatment is Accera.

number one!

I have no idea how this happened, but this blog is NUMBER ONE on Google if you search for "Alzheimer's Blog".  That is amazing.  People pay money to get results on the first page.
number one in google