What Patients and Caregivers Need to Know About Alzheimer’s

You’re probably familiar with the saying, “What you don’t know can’t hurt you.” In my experience, that’s completely untrue. Conversely, what you do know often can help you.

You may already know someone with Alzheimer’s or another form of dementia. If you don’t, you probably will sooner or later. Alzheimer’s disease affects more than six million Americans, and that number is projected to rise as our population continues to age.

Either way, there are some things I’d like you to understand about this disease so you can be better prepared to cope with it, whether as a patient or as a caregiver.

Let’s start with some statistics:

One in three seniors die with Alzheimer’s or another type of dementia.
It kills more people than breast cancer and prostate cancer combined.
More than 11 million people provide unpaid care to people with Alzheimer’s.
This year, Alzheimer’s disease will have cost the U.S. $321 billion. By 2050, these costs are expected to rise to nearly $1 trillion.
More than 80 percent of Americans know very little about, or are not familiar with, mild cognitive impairment — which can be an early sign of Alzheimer’s.

Because Alzheimer’s is becoming more prevalent as the U.S. population ages, we should all understand this disease and get involved in finding a way to fight it.

My First Experience with Alzheimer’s

The first time I interviewed a patient with Alzheimer’s disease was as a medical student. I spoke with an immaculately dressed older woman who told me she was as “fit as a fiddle,” didn’t take any medications, and hadn’t ever had surgery. Sure, she didn’t have answers to everything, and frequently said, “Oh, I don’t keep track of that anymore,” or “That’s my son’s job.” I didn’t address her son, who sat quietly next to her.

I started to suspect that her diagnosis of dementia was a mistake. When I left the exam room, I proudly announced my concerns to her neurologist because, as I saw it, she looked and acted “normal” and answered most of my questions properly. The neurologist asked me to return with him to the room several hours later.

To my utter shock, the patient didn’t remember me or our interview at all. The neurologist then asked her the same questions in a different way, specifically testing her cognitive status, and involving her son, her Alzheimer’s caregiver. I was amazed to learn she had multiple diagnoses besides Alzheimer’s disease, took five different medications (all in a bag by her side), had had several surgeries, and lived with her children, who managed everything for her — like shopping, cooking, and getting dressed. As we left the room, the neurologist said, “I hope you learned something from this patient. Dementia can fool a patient, family members, even doctors.”

This experience helped inspire me to specialize in geriatrics. During my years of clinical work, I frequently interacted with patients with dementia. With each meeting, I gained a better understanding of the disease and how important and hard-working the Alzheimer’s caregiver is.

Patient Concerns

“Is the fact that I can’t remember something a sign of normal aging or Alzheimer’s disease?” That’s the first question I often get from patients. Many people fear it, hoping their condition is nothing more than classic forgetfulness. So it may help to know the ten early signs of Alzheimer’s:

Memory loss that disrupts your daily life
Struggling with planning/problem solving
Difficulty completing familiar tasks
Confusion about the time and place
Trouble understanding visual images/spatial relationships
New problems with words when speaking or writing
Misplacing things and being unable to retrace your steps
Worsening judgment and decision making
Withdrawing from work or social activities
Changes in mood and personality

If someone notices some of these changes, it doesn’t guarantee they have dementia. But it does mean they might want to see a doctor.

While a true diagnosis can be scary, it’s the first step in getting appropriate care. The advice I give patients is two-fold.

First, find a physician you trust. Speak with your primary care physician, who can either guide you through the diagnosis and treatment options or refer you to a specialist. Philadelphia is lucky to have several top-level academic institutions that provide state-of-the-art Alzheimer’s care and research.

Second, find sources for reliable information about Alzheimer’s, including treatment options, current research, and caregiver support groups. My personal favorite is the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care. Make a list of questions to bring to your physician when you go for a consultation.

Support for the Caregiver

From the family’s perspective, the question is always, “How do I take care of this person?” Again, the Alzheimer’s Association is a treasure trove of advice and help for caregivers. Among other resources, they offer a 24/7 telephone helpline, local support groups, and an Alzheimer’s caregiver guide filled with tips and training opportunities.

One of my all-time favorite books for caregivers is The 36-Hour Day by Nancy Mace and Peter Rabins. Revised in 2012, it offers comfort, practical advice, and support for families caring for someone with Alzheimer’s.

Caregiving is truly at the heart of good care for patients with Alzheimer’s disease. Just as it takes a village to raise a child, it requires the same to care for someone with dementia. Families cannot do it alone, and physicians may not be able to provide all the information. 

Join the Fight Against Alzheimer’s Disease

The rising prevalence of Alzheimer’s requires us all to understand it better and get involved in finding a way to fight it. The Alzheimer’s Association details multiple opportunities.

A good place to start is by joining the annual Alzheimer Association’s Walk to End Alzheimer’s. Every walker, and every step, makes a difference.