Saturday, September 23, 2006

FROM THE VAULT.4 - Sept. 2006

Hello Everybody,

The donations for last month - $115.00 - brings our total to $$11,204.26.
Thank you to everyone for your generosity. Every little bit counts!

I mentioned last month that I would provide some financial info associated with Alzheimer's Disease and long-term care.

There are many organizations associated with assisting families and caregivers by providing information regarding Alzheimer's Disease (AD). Many of them provide astonishingly similar information about home care, day-care facilities, financial burden and future projections about the spread of AD.

Here is the general consensus about AD:
- about 4.5 million people are afflicted with AD.
- about 450,000 (10%) are under 65 years old and this percentage is climbing.
- about 450,000 reside in Florida.
- Medicare presently pays one-third of its health-care funds for AD.
- AD is projected to afflict approximately 14-15 million people by 2050.
- the annual cost of caring for an Alzheimer's patient with mild symptoms is $18,400.
- the annual cost of caring for an Alzheimer's patient with moderate symptoms is $30,100.
- the annual cost of caring for an Alzheimer's patient with severe symptoms is $36,132.
- the average direct cost of caring for an Alzheimer's patient from diagnosis to death is $174,000.
- the annual cost of nursing home care in the US is approximately $42,000 to $52,000.
- approximately half of all patients in nursing homes suffer from AD.

American Health Assistance Foundation

American Association for Geriatric Psychiatry

National Institute on Aging

Agency for Health Care Research and Quality (september 1996)

National Mental Health Association

Alzheimer's Association

As of July 23, 2006, the following info regarding annual cost for nursing home care can be obtained on the internet:

• "The average annual cost for nursing home care in the U.S. is approximately $52,200."
The American Health Assistance Foundation

• "The average cost for nursing home care is $42,000 per year..."
The Alzheimer's Association

• "The average per patient cost for nursing home care averages $42,000/year..."
The American Association for Geriatric Psychiatry states on their web site:

Two of the three groups are in agreement with the American Health Assistance Foundation, providing a figure 23% higher at $52,000. Which figure is an individual seeking assistance supposed to believe is accurate? Most people would say that to be safe you should figure on the higher amount. That would lead us to believe that the annual cost of nursing home care in the US averages around $52,000.

What's interesting is all of these organizations derive their statistics from Metlife's Mature Market Institute, a company that deals with nursing homes on a national level.

Let's go to the actual reports provided by Metlife's Mature Market Institute:

• 2006 Report: due to be released in August 2006.

• 2005 Report: the average cost is $203 per day or $74,095 annually.
[] page 4

• 2004 Report: the average cost is $192 per day or $70,080 annually.

• 2003 Report: the average cost is $181 per day or $66,065 annually.
[] (page 8)

• 2002 Report: the average cost is $168 per day or $61,320 annually.
[] (page 6)

Let's stop there. If we go back to August of 2002 and review the Metlife report, the average annual cost of nursing home care is $61,320. That's not $52,000 and certainly not even close to the $42,000 figure provided on The American Health Assistance Foundation and the Alzheimer's Association's web site. It seems we might have to travel as far back as 2000 to find a figure that matches $52,000. At that time, March 2000, the American Council on Health Insurers came out with a published piece called "Can Aging Baby Boomers Avoid the Nursing Homes?" On page 15, the annual nursing home cost is quoted at $52,000. My attempt to find the average nursing home cost at $42,000 was unproductive. I can only guess that you would have to go back to 1998 or 1997 to find that average annual cost.

We need this information to be accurate, considering how critical the cost of nursing home care is to family members trying to make financial decisions about a loved one's long-term care. By posting out-dated costs, the Alzheimer's Association and The American Association for Geriatric Psychiatry are telling families the average cost of nursing home care is $42,000 when in reality the average costs are $74,095 as of April 2005. By 2006, the cost of nursing home care could reach $80,000. That is almost TWICE the cost being provided for public consumption by major Alzheimer's resources.

Wanting to know why their information wasn't accurate, I decided to e-mail each organization on July 23, 2006. Here's the message I sent to two Alzheimer's Association's contacts and :

I am seeking information associated with the cost of long-term nursing home care. On your web site [], I found the following statement:

"The average cost for nursing home care is $42,000 per year..."

How true is that?

The MetLife Mature Market Institute reported in 2005 that the average cost is $203 per day or $74,095 annually. This info can be found on page 4 at the following address:

I would greatly appreciate an explanation as to why there is such a difference in the information presented on your web site today (July 23, 2006) and the info presented by the MetLife report which was released a year ago in August of 2005.

Thank you.
Allan Doherty

Similar e-mails were sent to the the following contacts:

American Association for Geriatric Psychiatry

American Health Assistance Foundation

Gayle Handiboe, Manager of Development
Kathleen Honaker, Executive Director

For each organization I replaced the price quote attributed to their website ($42,000 or $52,000) and the URL where their quote appeared.

On Monday, July 24, 2006 at 10:39 am, the following e-mailed appeared:

Hello Mr. Doherty,
Thank you for writing to the American Association for Geriatric Psychiatry. The page you refer to on our site was written and posted in 2001. We will be taking it down to update it and will re-post later in August.
Best regards,
Kate McDuffie
Associate Director, Communications
American Association for Geriatric Psychiatry
Geriatric Mental Health Foundation
Phone: 301.654.7850, ext. 113

My follow-up question:

Thanks so much for the immediate response. Do you have any idea why this
info hasn't been updated since 2001? I'm sure many families seeking
information over the years have used this info as a basis upon which to make
Allan Doherty

Kate's response to the follow-up question:

Hi Mr. Doherty,
Thanks for sharing your concern. We're adding new staff and will strive to keep our website material updated.
Best regards,

Monday, July 24, 2006- No Response
Tuesday, July 25, 2006- No Response
Wednesday, July 26, 2006- No Response

At 10:30 pm, Wednesday, July 26, I re-sent the same e-mail to every contact address on the website. At 2:29 pm on Thursday, July 27, 2006, I received the following e-mail:

Dear Mr. Doherty,
Gayle asked me to respond back to your email. Thank your for your email.
Some time ago, we had decided to use government statistics on our
website and in our literature. After reviewing your email, we are
planning on making an exception to this rule. The government numbers are
getting outdated and the MetLife figures are probably more accurate.

Thank you for bringing this to our attention.

If you have any further questions, please do not hesitate to contact us.

Kind regards,
Ed Berger

At 2:40 AM on Monday, July 24, 2006, I received the following e-mail:

Thank you for contacting the Alzheimer's Association, a national leader in the fight against Alzheimer's disease and related disorders. We believe that it is critical for people with dementia and their families to receive information, care and support early in the fight against the disease. The Alzheimer's Association appreciates the opportunity to provide you with the information you requested.

Your request for information is being forwarded to the appropriate department and a representative will contact you shortly regarding your request. We generally respond to every request within 48 hours, however, if you have still not received a response with 5 business days, please e-mail us at and we will look into this request.

If you are interested in receiving further information, our contact center can assist you with general information, education and referral to a local Alzheimer's Association Chapter. In addition, we provide care consultation with Social Workers to assist those who require decision-making support, crisis assistance and guidance during transition. You may contact the Alzheimer's Association, twenty-four hours a day, seven days a week, by calling our toll-free number at 1-800-272-3900.

Alzheimer's Association
Contact Center

I re-sent the same e-mail Wednesday, July 26, 2006. No response at all.

On Wednesday evening, I contacted "the Alzheimer's Association, twenty-four hours a day, seven days a week, by calling our toll-free number at 1-800-272-3900." A women named Elizabeth answered. I asked about the long-term cost information posted on their website. She responded that "the information was factual when the report was prepared." When I asked why the information was 4-5 years out-of-date, she said she would pass this information on to others who would review the question, research the information and get back to me. I gave her my name, address, e-mail address and cell phone number.
Thursday, July 27, 2006- No Response
Friday, July 28, 2006 - No Response
Saturday, July 29, 2006- No Response

On Saturday, I called the 800 number again and got in touch with Elizabeth again. I then dialed the National Office telephone number @ 1-312-355-8700 (retrieved from web page). The phone rang 20 times before I decided to hang-up. No message machine picked-up.

I waited until the first week in August to contact the Alzheimer's Association. This time I called the Media Relations telephone number. When I asked them if they were responsible for the misleading and out-dated information on their web site, I was immediately transferred to Pat Kenkoski , The Librarian. She said they make an effort to update the web site whenever they receive tangible information that they can use. The info from the 2000 Metlife Mature Market Institute was tangible so they used it. When I mentioned that every year the Metlife's Mature Market Institute comes out with a report in August detailing the changes in nursing home cost throughout the country, she responded by saying they intended to update the information this year (2006). I then asked why the site hadn't been updated for years 2001, 2002, 2003, 2004 and 2005. Her response, "We intend to update the info this year." I then summarized for her, "So you know that Metlife reports come out every year since the 1990's. Your association hasn't updated it's website for the past 5 years and knows that the info is out-dated?" Her single word response...Yes. I thanked her very much for her honesty and told her that I looked forward to the updated website info.

The American Health Assistance Foundation updated their information to reflect the Metlife 2005 information. See the following:
As you can see it is a simple html text page that doesn't feature the logo or navigation bar that are featured on every other page on their website. We thank them.

The American Association of Geriatric Psychiatry took the web page detailing their out-dated information off line. Check out the following:
But I am puzzled why I found the same innaccurate information on a new page:
On this web page the following info is presented; "The average per patient cost for nursing home care averages $42,000/year,..."

The Alzheimer's Association continues to post their out-dated information. Please check the following:
"The average cost for nursing home care is $42,000 per year (10)..."
Here's footnote (10):
(10) Rice, DP; et al. “The Economic Burden of Alzheimer’s Disease.” Health Affairs, Summer 1993; 12(2): 164 – 176.

These institutions, and the websites they publish, are resources established to assist families struggling with the agonizing choices and decisions that Alzheimer's presents. There is none harder than the question of nursing home care. Alzheimer's disease is tough enough without adding incorrect and out-dated information to the mix. The following is a list of web pages with contact information, in case you would like to call, email or write a letter.

Alzheimer's Association
National Office
225 N. Michigan Ave., Floor 17
Chicago, IL 60601-7633
tel: 1.800.272.3900
tel: 1.312.335.8700
fax: 1.312.335.1110

American Health Assistance Foundation
American Health Assistance Foundation
22512 Gateway Center Drive
Clarksburg, Maryland 20871
Phone: 1-800-437-2423
Phone: 1-301-948-3244
Fax: 1-301-258-9454
Information Specialist: Isabel Quiroz []

American Association of Geriatric Psychiatry
7910 Woodmont Ave
Suite 1050
Bethesda, MD 20814-3004
Phone: 1-301-654-7850
Fax: 1-301-654-4137

I will continue to investigate information associated with Alzheimer's care and bring you the results.

Thank you,
Allan Doherty


  1. Alan and all,

    I think you've come across part of the Alzheimer's information gap.

    When my dad was alive, we found very little accurate or detailed information on Alzheimer's and dementia. As baby boomers move into caregiving roles and worry about their own memories I think we'll demand more and better information.

    I think we deserve a complete picture of what's known about dementia, what's hypothesized, and what's unknown. Researchers deserve an educated and interested audience, and as much support as we can give them.

    I've been working to fill some of this information gap on my blog, The Tangled Neuron. I'm pleased that The Unforgettable Fund and all the caregiver blogs listed on the Memory Lane webring are working towards the same goal.

  2. Patty--Heartfelt thanks to you and Allan for advocating!! This post is priceless.

  3. Here, here, regarding both the post and comments. Thank you for bringing my attention to this. I've experienced and known about the information disconnect regarding dementia and elder care in a variety of areas for a long time but had no idea it was this profound.
    How much we have yet to accomplish. Thank you for your magnanimous and determined efforts.

  4. This is incredible information! Knowing what I know about my Grandmother's health care costs I have often wondered where some of the Alz. Assoc. numbers have come from, but never challenged the information. Kudos to you!!!

  5. Allan, this is incredible work. Please keep it up! What happens when you multiply these numbers by 3 to 4.5 million? Does that exceed the ~$100 billion figure being bantered about?

    (too tired to do the math myself)