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Sunday, December 14, 2008

Alzheimer's Association Response on Early Screening For Alzheimer's Disease


Previously I wrote, How Soon Is Too Soon to Screen People for Alzheimer's Disease?.  I want to make it clear that I favor screening. I also favor the  brief three-minute cognitive screening test often called the Mini-Cog (MC). This brief test can identify mild cognitive impairment, dementia or Alzheimer's. I base my own opinion on two factors. First, I believe my mother would have been diagnosed earlier if the test had been available to me. Second, I live in south Florida and I literally "bump into" people all the time that are suffering from dementia. I want to make it clear, I am not a doctor or expert and my belief is based on my experience with my mother and the growing list of families I meet directly that have a loved one suffering from dementia. I understand illnesses such as hypothyroidism and depression can present as dementia or Alzheimer's. A memory doctor or specialists should always be involved and make the definitive diagnosis.
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I know from first hand experience that older persons suffering from dementia often fail to get diagnosed because their children believe its  "old age". This is very common and I don't fault anyone if they miss the early signs. There is also substantial research information showing that personal care physicians, due to lack of training, often fail to make the diagnosis. I have seen this over 20 times. In the case of my mother,  it took three personal care physicians to get it right. Each of those physicians have very large practices and are highly regarded in my area.

It seems I ruffled the feathers of the Alzheimer's Association in my original article. They wanted to clarify their position and sent me a long email with an attachment. They also took issue with the quote I used from Dr. Thies. The quote:
"The worry," says Bill Thies, vice president of medical and scientific relations at the Alzheimer's Association, is that patients may react to positive results in "inappropriate" ways. "Will they become fully depressed?" he says. "If that's the case, then you're going to obscure any public-health benefit."

The quote is sourced from the Wall Street Journal and is attributed to the Wall Street Journal on my blog post. I believe the article from the WSJ is excellent and worthwhile reading. They did a very good job framing the issue.

I am not affiliated with any organization and I don't have an "ax" to grind with anyone. My goal here is simple and straightforward: to share the benefits on my own experience and research with others that might find themselves in my shoes. We, the caregivers, live in the front row of Alzheimer's. I am an Alzheimer's Caregiver.
The Alzheimer’s Association® advocates efforts that increase early detection and diagnosis of Alzheimer’s disease, a degenerative fatal disease that currently affects approximately 5.2 million Americans. Alzheimer’s is a very complex disease and unfortunately today there is no quick and accurate test to determine whether a person has Alzheimer’s disease. The Alzheimer’s Association does not support community-based memory screening in general populations as a means to identify people who should be seen by a physician for a diagnostic evaluation. Memory screening when implemented in community settings generally refers to the application of a simple mental status test that gives a numerical score to indicate the presence or absence of cognitive impairment.

I received the following email from Niles Frantz, Senior Associate Director, Public Relations, Alzheimer’s Association. The attachment is from the Alzheimer's Association and is titled: COMMUNITY-BASED MEMORY SCREENING.

TO: Bob DeMarco @ Alzheimer’s Reading Room –

We read your piece dated December 11, 2008 on screening for Alzheimer’s, including your comment on the quote from Bill Thies, PhD, the Alzheimer’s Association’s Chief Medical and Scientific Officer.

We admire your efforts as a caregiver and a blogger to understand the wide variety of available (and constantly changing) information on Alzheimer’s and share it with others who can benefit from what you’re doing. We want you and them to know that the Alzheimer’s Association is here to help, too.

We think it important to point out that Dr. Thies’ comment was made in the context of an interview about community-based screening of non-symptomatic people for Alzheimer’s and dementia. The quote alone does not fully reflect what the Alzheimer’s Association believes about the need for thorough diagnosis and early detection for people who are already exhibiting symptoms, as is illustrated in your example (which is a fine and illustrative example).

The Alzheimer’s Association is a strong believer in early and accurate diagnosis of Alzheimer’s disease, and is one of the strongest and loudest voices for this issue in the community. We actively support development of better diagnosis tools – through funding of research and with local, state and federal advocacy efforts. We deliver public education about warning signs and risk factors – with web pages (www.alz.org, www.actionalz.org), brochures and other materials; media relations; and public education programs through our local chapters nationwide (1-800-272-3900).

It is also important for people to know that while there is no current cure for Alzheimer’s, life will not stop with the diagnosis. There are treatments and services that can make life better for everyone living with Alzheimer’s. Timely diagnosis can provide:

- A helpful framework for understanding symptoms.

- An opportunity to build the right medical team.

- Access to existing medications.

- An opportunity to participate in studies of experimental drugs or other treatments.

- Access to programs and services.

- Enhanced safety and security.

- An opportunity to plan for the future.

We want to share with you our full statement on community based screening for Alzheimer’s; it is attached. Please let us know if there is any other information we can help you (and your readers) with.

Good luck and All the best to you,

Niles Frantz

COMMUNITY-BASED MEMORY SCREENING

- Alzheimer’s Association Statement –

The Alzheimer’s Association® advocates efforts that increase early detection and diagnosis of Alzheimer’s disease, a degenerative fatal disease that currently affects approximately 5.2 million Americans. Alzheimer’s is a very complex disease and unfortunately today there is no quick and accurate test to determine whether a person has Alzheimer’s disease. The Alzheimer’s Association does not support community-based memory screening in general populations as a means to identify people who should be seen by a physician for a diagnostic evaluation. Memory screening when implemented in community settings generally refers to the application of a simple mental status test that gives a numerical score to indicate the presence or absence of cognitive impairment.
Often these brief mental tests result in “false positives” and “false negatives.” “False positives” occur when a person fails or scores poorly on a test but does not have Alzheimer’s disease or another dementia. This happens most often for ethnic minority group persons, persons for whom English is a second language or persons with low educational level. “False negatives” occur when a person scores “passes” or scores well on a test but actually does have Alzheimer’s disease or another dementia. This happens most often for persons with a high educational level.


The Alzheimer’s Association strongly believes any procedure that uses a score on a test to indicate presence or absence of cognitive impairment should only be used as one of a battery of tests by qualified medical professionals and not singly in nonmedical, community settings, especially if conducted by those without proper training.

Accurate diagnosis of Alzheimer’s disease requires a comprehensive diagnostic evaluation by a qualified physician that should include: a thorough review of a person’s medical history, physical and neurological exams, laboratory tests, and imaging tests. Interviews with family members or close friends about changes in a person’s cognitive functioning and behavior should also be considered whenever possible. A diagnostic evaluation based on all of these elements provides the best possible assurance that the resulting diagnosis will be accurate.

The Alzheimer’s Association has developed a list of the 10 Warning Signs of Alzheimer’s (see next page). If you or a loved one has experienced 2 or 3 or more of these warning signs, and especially if they have worsened over time, it’s important that you see a physician who is experienced in diagnosing and treating Alzheimer’s.

Ten Warning Signs of Alzheimer’s, from the Alzheimer’s Association

Memory loss: Forgetting recently learned information is one of the most common early signs of dementia. A person begins to forget more often and is unable to recall the information later.

Difficulty performing familiar tasks: People with dementia often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps to prepare a meal, place a telephone call or play a game.

Problems with language: People with Alzheimer’s disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may be unable to find their toothbrush and instead as for “that thing for my mouth.”

Disorientation to time and place: People with Alzheimer’s disease can become lost in their own neighborhoods, forget where they are and how they got there, and not know how to get back home.

Poor or decreased judgment: Those with Alzheimer’s may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show poor judgment about money, like giving away large sums to telemarketers.

Problems with abstract thinking: Someone with Alzheimer’s disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are and how they should be used.

Misplacing things: A person with Alzheimer’s disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl.

Changes in mood or behavior: Someone with Alzheimer’s disease may show rapid mood swings – from calm to tears to anger – for no apparent reason.

Changes in personality: The personalities of people with dementia can change dramatically. They may become extremely confused, suspicious, fearful or dependent on a family member.
Loss of initiative: A person with Alzheimer’s disease may become very passive, sitting in front of the TV for hours, sleeping more than usual or not wanting to do usual activities.

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. For more information, visit www.alz.org

CONTACT: Niles Frantz, niles.frantz@alz.org, 312-335-5777

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