My first experience with Alzheimer’s care
I remember the first time I interviewed a patient with Alzheimer’s disease. I was still a medical student, a confident newbie, just learning the skills it takes to obtain a good medical history. I sat in the exam room with a lovely, immaculately-dressed, older woman who appeared to answer all my questions adequately. No, she was as “fit as a fiddle.” No, she didn’t take any medication. No, she had never had surgery. Yes, thank you very much, she could take care of herself without any problem. I didn’t address her son who sat quietly next to her.
As the interview went on I began to suspect that her diagnosis of dementia had been an error, and when I left the exam room I proudly announced my concerns to her neurologist, because, as I saw it, she “looked” normal, “acted” normal, and answered most of my questions properly.
Sure, she didn’t have answers to everything. Frequently she would say, “Oh, I don’t keep track of that any more,” or “That’s my son’s job.” It is fair to say that I was swept up in her mastery of social grace. The neurologist kindly heard my assessment and asked me to return with him to the room several hours later.
When we returned, to my utter shock the patient did not remember me at all, not even our interview. I then watched the neurologist ask the same questions in a different way, specifically testing her cognitive status and involving her son, her Alzheimer’s caregiver, in the interview. I was amazed to realize that she had multiple diagnoses besides Alzheimer’s disease, took five different medications (they were in a bag by her side), had had several surgeries in her life, and currently lived with her children who managed everything from shopping and cooking to getting dressed. As we left the room he said, “I hope you learned something from this patient interaction. Dementia can fool a patient, a family member, and even doctors, so it is important to know how to do a proper evaluation.”
It’s fair to say I certainly learned something that day, and the experience became one of many that prompted me to focus my study on geriatrics. During my years of clinical work I continually had the opportunity to interact with patients with dementia, and with each meeting I became better and better at understanding the multiple facets of the disease and the importance and hard work of the Alzheimer’s caregiver.
The scary truth about Alzheimer’s
Alzheimer’s disease affects more than 5 million Americans, and that number is projected to only rise as the population ages. Did you know that…
- Alzheimer’s disease is the only cause of death in the top 10 that cannot be prevented, cured, or slowed.
- Almost two-thirds of Americans with Alzheimer’s disease are women.
- One in three seniors die with Alzheimer’s or another dementia.
- Nearly 16 million Alzheimer’s caregivers provide an estimated 18 billion hours of unpaid care valued at more than $220 billion.
- In 2016 Alzheimer’s disease will cost the U.S. $236 billion. This number is expected to rise to more than $1 trillion by 2050.
Every case is different, but the same questions tended to arise during my appointments with these patients and their caregivers.
The first question I often receive is, “Is the fact that I can’t remember something a sign of normal aging or Alzheimer’s disease?” Because the condition has become mainstream many patients know their diagnosis before they come in the office. Others fear it, but hope their condition is nothing more than classic forgetfulness. A true diagnosis can be scary, but getting an accurate one is the first step in ensuring they receive the best, appropriate care.
The challenge for patients, in our high tech world, is to determine how to sift through the barrage of medical information we receive constantly; you can’t turn around without hearing about a new cure or innovative prevention for Alzheimer’s disease. So the advice I always give patients is two-fold.
First, find a physician you trust. Speak with your your primary care physician who can either guide you through the diagnosis and treatment options themselves or refer you to a specialist whose focus is on Alzheimer’s disease; Philadelphia is lucky to have multiple top-level academic institutions providing state-of-the-art care and Alzheimer’s research.
The second recommendation is to find a resource that is able to encompass everything from diagnosis to treatment to caregiver support groups to current research. My personal favorite is the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support, and research. Read up on the top 10 warning signs of the disease, discover whether your memory loss fits the symptoms, and learn about Alzheimer’s stages and treatments. Perusing the site can help you make a list of questions and concerns to bring to your physician when you go for a consultation.
Alzheimer’s caregiver tips and concerns
From the family’s perspective the question always is, “How do I take care of this person?”
Again, I believe the Alzheimer’s Association is a treasure trove of advice and help for caregivers of dementia patients – they have everything from a 24/7 telephone helpline to local support groups to an online an Alzheimer’s caregiver guide filled with tips and training opportunities. Caregiver issues are truly at the heart of good Alzheimer’s care. And just as it takes a village to raise a child, it requires the same to care for a patient with dementia. Families cannot do it alone and, frankly, physicians are often unable to provide all the information.
One of my all-time favorite reference books I recommended to Alzheimer’s caregivers was The 36-Hour Day, by Nancy Mace and Peter Rabins. Revised in 2006 for its 25th anniversary, this resource for families caring for people with Alzheimer’s disease offers comfort, practical advice, and support.
Even if you don’t currently know someone with Alzheimer’s, the prevalence of it requires us all to understand it and get involved in helping us find a way to fight it. The Alzheimer’s Association at www.alz.org details multiple opportunities. A good place to start, however, is by joining me and my Independence Blue Cross colleagues for the Alzheimer Association’s Walk to End Alzheimer’s on Saturday, November 12. Every walker, and every step, makes a difference. I hope to see you there!