Having Alzheimer’s is hard enough; stigma and bureaucracy make it harder

We come before you today as mother and daughter, Terrie and Shon, Alzheimer's patient and caregiver.

When I, Terrie, was first diagnosed with Alzheimer's nine years ago, I gave myself a minute to cry. Sixty seconds later, I picked myself up, and decided to accept my diagnosis and find a way to live with it.

I was then — and am still — determined to be dancing around the nursing home until the end.

But tenacity alone won't keep me dancing. There is no cure for Alzheimer's, though powerful treatments are available to alleviate symptoms.

Unfortunately, due to the stigma associated with some of Alzheimer's most challenging symptoms, many patients aren't receiving the care they need. Shame surrounding common issues like depression and mood disorders still deters many patients from seeing medical professionals who can treat them. This stigma even permeates our healthcare system, with programs like Medicare often refusing to cover essential psychiatric medications.

That has to change. Medicare and our healthcare system can help by ensuring that Alzheimer's patients in need of psychiatric drugs can get them.

For the two of us, the past nine years have had their share of ups and downs, but the last few have been especially hard as the disease continues to progress. I, Terrie, am unashamed to tell you that I have developed neuropsychiatric symptoms (NPS) as a result of my Alzheimer's.

Cognitive impairment and memory loss are the hallmark symptoms of Alzheimer's — in fact, forgetting people's names and getting lost were what led me to consult a doctor. NPS are the lesser-known symptoms that also come with the disease. They include depression, anxiety, anger, aggression, apathy, hallucinations, agitation and more.

I'm experiencing a number of these symptoms. For example, my patience is growing short, and I become agitated more easily. I don't like being this way, but I know that I have a disease with symptoms I cannot control. And that's why I'm unashamed.

But there's a stigma surrounding NPS that can make people ashamed and keep them from seeking professional help, even though 97% of Alzheimer's patients develop some NPS. Feelings of embarrassment, confusion and frustration can dissuade patients and their caregivers from seeking further medical help.

One in nine Americans over the age of 65 has been diagnosed with Alzheimer's. But for every patient, there are even more family members providing care through good days and bad days. As one of my mother's caregivers, I, Shon, know firsthand what it's like to watch someone you love change.

Caregivers — daughters and sons, wives and husbands, nurses and clinicians — are working to end the stigma around NPS and accept the changes in behavior of the people we love. As my mother's patience waned, my patience has grown. I know now when to lean in and when to step back.

Unfortunately, the stigma is in our healthcare system too — and patients and caregivers need more help in managing NPS than we are currently getting. Healthcare systems place unwarranted restrictions on the proper medication for these genuine psychiatric problems.

The Centers for Medicare & Medicaid Services (CMS) has limited Medicare beneficiaries' access to antipsychotic medications for more than a decade now. Restrictive CMS guidelines encourage providers to avoid the best medications for NPS and instead treat them with less effective medications.

In order to avoid abuse of these medications, CMS collects data nationwide on the use of antipsychotics in nursing homes. But this can lead to avoidance of their use when appropriate. CMS should exclude patients prescribed antipsychotics to treat NPS associated with Alzheimer's and dementia from being tallied in these databases, since including them can disincentivize providers from prescribing the best possible treatments to patients in need.

After my diagnosis, I, Terrie, gave myself exactly a minute to cry because I knew I had to stay active and keep busy. The stigma associated with Alzheimer's patients forced me to retire eight years earlier than I planned. Now I use my time to advocate for others and help ensure the voices of more than six million Americans with Alzheimer's are heard.

Only when we come to accept our condition, and the conditions of our loved ones, can we begin to better ourselves. Breaking the stigma around NPS will allow Alzheimer's patients to find the best treatment plan available.

We don't get to choose the hand we are dealt, but with the right resources, we can play it as best as we can. In due course, only one of us will remember writing this piece. But right now, we both fully share the hope that it makes a difference.

• Terrie Montgomery, who is living with Alzheimer's disease, and her daughter, Shon Lowe, live in Glen Ellyn.