The Alzheimer Action Guide™
sponsored by the INR® and AlzheimerVideoNews.com
Introduction
The information on this website is designed to provide a rational, down-to-earth action plan for families with a loved one who has been diagnosed with Alzheimer's disease, or in whom the diagnosis of Alzheimer's is suspected. This guide is designed to give you useful information with which to plan how to proceed with the proper diagnosis and treatment of your family member. Written in a no-nonsense style it is meant to mobilize the family to take immediate action to help safeguard the health of your family member, to minimize uncertainty, to minimize family disruption, and to provide a wealth of helpful information. This website is written by a physician who has faced these same challenges as you in dealing with a loved one with Alzheimer's, and finding help. So it is written with years of personal and professional experience, which it is hoped can help you, the reader.
The importance of early action
Many families still have the mistaken idea that nothing can be done for Alzheimer's - therefore early action is not necessary. The information on this website will demonstrate to you that early action can make a significant and important difference in the health of your loved one. This website is really a Call to Early Action. If you read it carefully you will understand both why and how to start to proceed in fighting Alzheimer's.
As an aside, while this website is directed to the patient's family members, who are in the best position to help, it may also be read and understood by the patient. But please be aware that because of the fear which Alzheimer's engenders, that there is a natural tendency to put off diagnosis, or even consultation with a physician. In the past, when effective treatments were not available, this may have made sense. Now, as the second decade of the new century approaches, there are new therapeutic approaches available that have produced positive results, some of which were beyond hope just a couple of years ago. By taking the time to read through this website you will understand what the new potential to help is, and why this means that the earliest intervention is now critically important. With just a few minutes reading you will understand the few steps you need to go through to be correctly positioned to safeguard your brain health.
The first step
The most important early step is for the family to recognize that there is a problem. Your loved one has been having problems, which you have recognized as memory difficulties, repeating questions, forgetting things, or difficulty organizing or accomplishing tasks which were formerly easily done.
Step 1: Decide who will be in charge of following through on the action plan necessary - the primary caregiver
This may sound easy, but it is a critical first step. Someone must take responsibility to get things done and see them through -let's call this person the primary caregiver.
Step 2: To the primary caregiver: Recruit support for yourself
Being the primary caregiver
is not easy. Often the primary caregiver has to persuade the patient
to seek physician assistance, and most often this idea is resisted.
As dementia takes hold, the patient becomes less capable of handling
his or her affairs, so more of a burden falls on the caregivers.
This can be exhausting. It is therefore vitally important that
as early as possible this caregiver recruit support for himself
or herself, either from within the family or from friends. Talk
to your family members and identify which of them can help you
to cope. Which can you confide in? Which can help with daily tasks?
And, most importantly, who can you confide in and count on to
help you plan what needs to be done to help the patient? Whose
advice can you trust? Sit down, and think about this, and plan
this out. In a way, this is a war you are about to wage, a war
against Alzheimer's. You need to gather your forces for the battle,
which you are already in. To deny that you are being attacked
is to live in a fool's paradise. The attack will not go away.
It will only get stronger, and you need to be prepared. Gather
those whom you trust and who will help you to fight at your side.
And prepare for battle.
PET
scan of the brain in Alzheimer's demonstrating decreased brain
metabolic activity in affected areas
Diagnosis
One of the reasons that early action is necessary is for you to know where the patient stands; how advanced is the disease, what is the process that is going on, and how quickly is it progressing. The diagnosis and the pace of progression will help you plan on how to treat. It is therefore critical that the patient be tested, as soon as possible, to establish a baseline, at the earliest possible time. Once a baseline is established one can determine the rate of progression; and then determine how much good the chosen treatment is at stopping or slowing down the illness. Here are the essential diagnostic tests - go to your physician and make sure they all are ordered:
Step 3: Obtain the essential baseline diagnostic testing
Essential diagnostic tests
A. Thorough medical history and physical exam: Establish the state of the patient's health; any co-existing medical conditions and their possible contribution to the patient's difficulties in memory, thinking, or behavior. All dementia is not Alzheimer's: there are treatable medical conditions which can cause dementia, such as vitamin B12 or folate deficiency, thyroid disease, or neurosyphillis contracted years ago (rare nowadays, but still worthy of ruling out).
B. Laboratory tests: Complete blood count (CBC); TSH or Free T4 index (thyroid); serum vitamin B12 and folate levels; RPR or VDRL (blood tests for syphillis); chest x-ray. A skin test for tuberculosis, if this has not been previously performed, is essential for those patients considering treatment with etanercept.
C. Neuroimaging: A CT scan or, preferably, an MRI scan of the brain is essential to rule out a treatable structural cause of dementia, such as a tumor or blood clot. The MRI gives more information than a CT scan and is therefore preferable, if available. In addition, a PET scan of the brain is helpful to help define which parts of the brain are underperforming. The PET scan may be difficult to obtain, and is not essential, but may be particularly helpful in young patients (those in their fifties), in those with rapidly progressive disease, and in whom the type of dementia affecting the patient is unclear.
Frequently asked questions(FAQ)
What is the outlook for someone diagnosed with AD?
Why is early diagnosis important?
What are the treatment options?
Are there tips and guidelines for caregivers to help them care for a loved one with Alzheimer's?
Establish a mental baseline
Once the baseline diagnostic testing is carried out (which can all be done within the course of a few days), it is essential that you establish exactly where your loved one stands with regard to the severity of the disease process on this given date.
Step 4: Establish a mental baseline with mental status and neurocognitive testing
In order for the primary caregiver, other family members, [and the patient, if he or she is able] to evaluate the effectiveness of any treatment method it is necessary to establish a baseline of mental and functional performance, and also the rate of change over time. To help to do this, the Alzheimer research community has helped to establish certain tests whose scoring methods are familiar to many. Please discuss with your physician which ones he prefers. The names for these tests vary, but they are generally described as mental status tests, or neurocognitive tests. The most widely used test is the MMSE (Mini-Mental State Exam), which is scored from 0 to 30, with 30 being the best performance. As a general rule, patients scoring 21-30 are considered to have mild Alzheimer's, those testing 11-20 are moderate, and 10 or less is considered to be severe. Most patients with Alzheimer's disease decline at a rate of 2-4 MMSE points per year (average of 3.3 points per year). Those declining much faster than these rates may have other forms of dementia, such as frontotemporal dementia, or co-existing vascular dementia, for example. Other tests, such as the Montreal Cognitive Assessment (MOCA) are especially useful for patients with mild Alzheimer's or a condition with cognitive difficulties which may precede Alzheimer's, called MCI (mild cognitive impairment). There are many additional forms of testing which may be useful, including the ADAS-Cog test, Trail-making tests, clock-drawing tests, and verbal fluency testing (including FAS letter fluency and category fluency). Particularly for people who are more severely affected, various questionaires which can evaluate a person's ability to perform the activities of daily living (called ADL) can be useful for quantitating a person's response to treatment.
This type of testing is useful if it is performed at regular, spaced intervals, such as every three to six months. It is not advisable to practice using these tests outside of the doctor's office, because this can partially invalidate the results.
For More Information
Several organizations offer information for caregivers about AD. To learn more about support groups, services, research, and additional publications, you may wish to contact the following:
Alzheimer's Disease Education
& Referral (ADEAR) Center
P.O. Box 8250
Silver Spring, MD 20907-8250
1-800-438-4380
301-495-3334 (fax)
Web address: www.alzheimers.nia.nih.gov
E-mail address: adear@nia.nih.gov
This service of the National Institute on Aging is funded by the Federal Government. It offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to AD. Staff answer telephone and written requests and make referrals to local and national resources. Publications and videos can be ordered through the ADEAR Center or via the website.
Alzheimer's Association
225 North Michigan Avenue
Suite 1700
Chicago, IL 60601-7633
1-800-272-3900
Web address: www.alz.org
This nonprofit association supports families and caregivers of patients with AD. Chapters provide referrals to local resources and services, and sponsor support groups and educational programs. Online and print versions of publications are also available at the website.
Children of Aging Parents
P.O. Box 167
Richboro, PA 18954
1-800-227-7294
Web address: www.caps4caregivers.org
This nonprofit group provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimer's disease also may find this information helpful.
Eldercare Locator
1-800-677-1116
Web address: www.eldercare.gov
The Eldercare Locator is a nationwide, directory assistance service helping older people and their caregivers locate local support and resources for older Americans. It is funded by the Administration on Aging (AoA). The AoA's Alzheimer's Resource Room is located at www.aoa.gov. It has information on caregiving, working with and providing services to people with AD, and where to look for support and assistance.
Family Caregiver Alliance
180 Montgomery Street
Suite 1100
San Francisco, CA 94104
1-800-445-8106
Web address: www.caregiver.org
Family Caregiver Alliance is a community-based nonprofit organization offering support services for those caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders. Programs and services include an information clearinghouse for FCA's publications.
The National Institute on Aging
Information Center
P.O. Box 8057
1-800-222-2225
1-800-222-4225 (TTY)
Web address: www.nia.nih.gov
The National Institute on Aging (NIA) offers a variety of information about health and aging. To order publications (in English or Spanish) or sign up for regular e-mail alerts, visit www.nia.nih.gov/HealthInformation. Visit NIHSeniorHealth.gov (www.nihseniorhealth.gov), a senior-friendly website from the NIA and the National Library of Medicine. This website has health information for older adults. There are special features that make it simple to use. For example, you can click on a button to have the text read out loud or to make the type larger.
The Simon Foundation for Continence
P.O. Box 815
Wilmette, IL 60091
1-800-237-4666
Web address: www.simonfoundation.org
The Simon Foundation for Continence helps individuals with incontinence, their families, and the health professionals who provide their care. The Foundation provides books, pamphlets, tapes, self-help groups, and other resources.
Well Spouse Association
63 West Main Street, Suite
H
Freehold, NJ 07788
1-800-838-0879
Web address: www.wellspouse.org
Well Spouse is a nonprofit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse publishes the bimonthly newsletter, Mainstay.
(Please note: this website is
under construction, additional material is in the process of being
added, and the present text may be revised).
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