You were just diagnosed with Alzheimer’s. Your husband was just diagnosed with Alzheimer’s. Your grandmother was just diagnosed with Alzheimer’s. Whatever your connection to the disease, equip yourself with as much information as possible. Know what resources are available, take advantage of them, and share them with others facing the same diagnosis.
No two Alzheimer’s stories are the same, but there’s nothing more affirming than knowing you’re not alone in this battle, whether you’re a caregiver or a diagnosed individual. Get the facts, connect with others in the same situation, and maneuver the rough waters ahead with confidence.
Begin at the Beginning: What is Alzheimer’s?
The German physician Alois Alzheimer gave this progressive and fatal brain disorder its name after seeing a patient, the infamous Auguste D., who told him, “I have lost myself.” The year was 1906.
Fast forward 104 years, and we still have much to learn about this bizarre and cruel disorder for which, as yet, there is no cure.
Dementia is an umbrella term that encompasses various types of brain disorders that cause a decline in cognitive function which interferes with daily activities (as per the National Institute on Aging). Alzheimer’s is the most common form of dementia, as it accounts for 50-80 percent of dementia cases. Related dementias include vascular dementia, Lewy Body dementia, Huntington’s disease, and normal pressure hydrocephalus.
A few things to remember about Alzheimer’s disease (AD):
It is a degenerative disease – as of now, no treatment can reverse it.
It is NOT normal aging – although age is a strong risk factor, it is not the only one. You will not get AD just because you have reached/are over a certain age. Young-onset AD affects about 400,000 people under the age of 65 and afflicts people as young as 21.
AD can be misdiagnosed; depression and urinary tract infections, for example, can cause dementia-like symptoms. Be sure that your doctor does a thorough examination, ruling out all other possible causes, before giving you the AD diagnosis.
Digging deeper on definitions…
Can You Prevent & Treat Alzheimer’s/Dementia?
There is currently no cure for Alzheimer’s, and treatments do little more than to slow the process of degeneration and perhaps slightly alleviate the symptoms. You cannot take a pill to prevent the onset of Alzheimer’s. In fact, as researchers are still trying to determine the trigger for AD, sometimes 10-20 years may pass before any of the warning signs present themselves, further complicating the potential for prevention.
Are there things you can do to safeguard against the disease? Certainly, but know that these practices cannot guarantee prevention. The Alzheimer’s Association offers 10 simple steps to “maintain your brain.”
The Fisher Center for Alzheimer’s Research also sheds some light on the subject here.
For an in-depth examination of this question, check out the National Institute on Aging’s report, “Can We Prevent Complex Diseases Like AD?”
Signs & Symptoms: What to Look For, When to Call the Doctor
Everyone – from a 10-month-old to a 110-year-old – forgets things. A husband forgets his wife’s birthday. A child forgets that touching a hot stove can hurt him. Where did I put my keys? and Why did I just walk into this room? are undoubtedly questions that frequently pop into the average person’s head.
Forgetfulness is a normal part of life.
Alzheimer’s is an entirely different form of forgetfulness – and it’s only one of many symptoms characterizing the disease. It is extremely important to understand that misplacing your keys does not immediately translate into “I must have Alzheimer’s.” If you are concerned, either about yourself or a loved one, look at all the signs and symptoms before tagging yourself or your loved one with a giant A. Don’t self-diagnose, and absolutely do not attempt to diagnose someone else. Make an appointment with a professional if there are just a few too many commonalities on this list:
1. Memory loss that disrupts daily life
2. Challenges in problem-solving
3. Difficulty completing regular tasks
4. Confusion with time/place
5. Trouble understanding visual images/spatial relationships
6. Language problems (speaking/writing)
7. Misplacing things/losing ability to retrace steps
8. Decreased/poor judgment
9. Withdrawal from work/social activities
10. Changes in mood/personality
Source: Alzheimer’s Association
Going to the Doctor
An accurate diagnosis of AD is crucial, although often difficult to obtain. Visiting your primary care physician/family doctor is a good first step, especially if you have been seeing this doctor for years and have established a level of trust and comfort with him or her. Your doctor is likely to recommend a specialist (perhaps a neurologist, psychologist, or psychiatrist) to solidify or even further pinpoint the diagnosis. Remember, Alzeheimer’s isn’t the only form of dementia. Here are some others.
Going to the doctor when you know what is wrong is a cake walk. You have a sinus infection, and you know that you probably need the doctor’s signature on a prescription for antibiotics. But when you’re going to the doctor because you think something more serious is going on, something as life-changing and devastating as AD, the appointment takes on a completely different tone, one that you may want to avoid or at least delay. Consequently, when you finally take the step and show up for that appointment, you may forget to ask important questions, or even withhold information about the symptoms you’re experiencing because you’re embarrassed, nervous, or frightened about what they could signify.
First of all, know that these are normal reactions! The unknown is frightening. Life-changing diagnoses are frightening. Alzheimer’s is frightening. However, prolonging such an appointment won’t help anyone, and the few treatments that are available for relieving Alzheimer’s symptoms (more on that later) are most effective when used early on in the disease process.
So go to your doctor prepared. The Alzheimer’s Association offers a great checklist.
I Have Alzheimer’s. What Happens Now?
Because AD is such a difficult disease to diagnose, it is also difficult to determine the course of the disease in every individual. Depending on where you are in the disease process at the time of diagnosis, it may be years before the symptoms truly impede your daily activities. It may be only weeks. Some symptoms may creep up on you slowly, some may take longer to appear, and some may never appear at all.
With AD, you may walk out of the doctor’s office feeling like you’ve been given a death sentence, yet you don’t feel ill and maybe never will, at least not in a physical sense. With diseases like cancer or diabetes, the physical manifestations have probably surfaced long before you visited the doctor, and if they haven’t, you know what’s coming (i.e. nausea, fatigue, headaches). But the unknown is what makes an AD diagnosis so frightening. When will I have to stop driving a car? When will I be at risk for wandering? When will I forget my wife’s name or face? When will I forget who I am?
Family members are asking the same questions, but what the individual diagnosed with AD experiences is worlds apart from what the family experiences. Here are some resources for post-diagnosis for the individual who is afflicted, followed by a list of resources for those who will be caregivers.
Resources for the Person with AD
- Dr. Richard Taylor has Alzheimer’s. He was diagnosed at the age of 58. He is now 65 years old and has authored numerous books on AD, travels the country to speak to audiences about AD, and serves on the Board of Directors for his local Alzheimer’s Association Chapter.
- This practical list from the Alzheimer’s Association covers everything from coping with changes to maintaining independence to planning ahead.
- On this page, you will find links to forums/message boards geared toward those living with Alzheimer’s.
Resources for the Person with AD and their Family and Friends
Rent the HBO documentary series The Alzheimer’s Project for an in-depth and jarringly honest look at four aspects of the disease (keep tissues handy): Part 1-The Memory Loss Tapes (living with Alzheimer’s), Part 2-Grandpa, Do You Know Who I Am? (kids and Alzheimer’s), Part 3-Momentum in Science (Alzheimer’s research), and Part 4-Caregivers.
Resources for the AD Caregiver & Family Members
Whether you’re the primary caregiver or a concerned family member or friend, you have a role to fill. No matter where you fall on the spectrum, get information on how you can assist with caregiving to someone with AD. You will also need resources to help you as you grapple with the unraveling of your loved one. There will be times that all the knowledge in the world won’t help – the first time your grandpa doesn’t remember your name will be an awful experience even if you know it’s coming. But if you understand the disease and its impact, you will realize that it’s part of the disease process and not because grandpa doesn’t love you.
- For kids and teens
For caregivers of all ages:
- National Institute of Aging’s Home and Family section
- The SFL blog’s Alzheimer’s Care section
Research News & Clinical Trials
We should thank Dr. Alois Alzheimer for calling attention to this disease but, remember, it was only 104 years ago. Though there has been impressive progress in research in that short time, we still have a very long way to go.
A good amount of Alzheimer’s research happens at the National Institute on Aging (NIA), part of the federally sponsored National Institutes of Health (NIH). The NIA also funds grants for cutting-edge Alzheimer’s research all over the country, primarily in universities and medical centers (click here for listings).
The National Institute on Aging offers a great table of contents for all things research, from treatments on the horizon to clinical trials in need of participants.
And, our blog offers a compilation of research headlines from the past few months.
Making Care Decisions
Individuals diagnosed with Alzheimer’s will need extensive care as the disease advances. Some may benefit from treatments currently available; others may take every pill out there and not see an inch of improvement. For some families, the time may come when they must make the difficult decision of placing a loved one in a residential care community.
All of these decisions – to take medication, to stay home and live independently, to move in with a family member who will provide care, to consider nursing home placement, choosing end-of-life/hospice care – must be weighed carefully and always be decided (even when traditional communication is nearly impossible), with the full participation and input of the individual at the center of it all. Thus, it is ideal that these decisions are discussed early on, so that the individual with AD may express his wishes before his decision-making capacity is severely affected. Just as there is no cure for AD, there is no blueprint that families or individuals should follow – no five-year plan or 10-step plan that can be viewed on a website or in a brochure – because everyone, including the afflicted individual, will experience the disease differently and will therefore come to the table with different ideas of what’s best. There’s also the issue of what’s available where you live, what you can afford, and other related issues. That being said, here is a basic outline of resources for the various categories of care.
Home Care & Residential Care
You Are Not Alone
There are hundreds of Alzheimer’s resources available on the information superhighway but, sometimes, too much information is overwhelming or crippling. Bookmark these three sites and add your favorites to the list:
Know this: Approximately five million Americans have Alzheimer’s – and 35.6 million people are afflicted worldwide. You are not alone.
Reach out, advocate for yourself or your loved one(s), be an Alzheimer’s mythbuster, connect to resources, and share them with others.
You are not alone.
- Michelle Seitzer