Alzheimer’s is taking my mind — but I’m still here. And there is more we can do.

Jay Reinstein
Fayetteville Observer

At age 57, I was diagnosed with early-onset Alzheimer's disease. In addition to memory issues, I found myself struggling with anxiety, depression, agitation and a number of other "neuropsychiatric symptoms" that it turns out are extremely common for people living with dementia. It took me about a year to build up the courage to talk to a mental health professional about the symptoms and to follow-up with other clinicians to get my diagnosis.

Since then, I've received a lot of great care, and found a medication that has greatly improved my quality of life. Now I'm sharing my story in hopes of encouraging other patients facing similar challenges to seek help.

Jay Reinstein

Over six million Americans currently have Alzheimer's, and as more Baby Boomers age, the number of cases could explode to nearly 12 million by 2040.  In addition to the memory loss that most people think of when they think of Alzheimer's, up to 98% of patients will also develop neuropsychiatric symptoms like I did, and they can put an immense strain on patients, families, and caregivers.

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But we don't talk about neuropsychiatric symptoms, which makes it hard on those living with dementia to understand what's going on and get the right care. We need to change that and start normalizing conversations about Alzheimer's and all of its devastating symptoms. These symptoms are caused by changes to the brain from the disease, and are as much a medical condition as the memory loss. They are not "behavior" issues that we need to learn to accept.

Barriers to treatment

We also need policies that reflect this reality. Unfortunately, outdated regulations currently make it difficult for people living with Alzheimer's to access treatments for these symptoms.

One major barrier comes from rigid policies put in place by the federal Centers for Medicare & Medicaid Services (CMS). These policies can discourage physicians from prescribing FDA-approved therapies to help manage Alzheimer's patients' neuropsychiatric symptoms.

For example, current CMS rules require long-term care facilities to count and report all residents who are prescribed antipsychotic medications. This rule is designed to prevent rare cases of abuse — but oftentimes, Alzheimer's patients need these medications and the rules don't distinguish between medically necessary and inappropriate drug use. As a result, providers may hesitate to prescribe treatments for Alzheimer's patients for fear of being penalized by CMS.

Obtaining medications difficult

Additionally, CMS makes it difficult for doctors to prescribe antipsychotic medications off-label for neuropsychiatric symptoms of dementia, despite strong evidence supporting these uses. Because FDA regulations often lag several years behind accurate clinical data, many antipsychotics prescribed for Alzheimer's patients are technically "off-label" — in fact, the FDA only approved the first antipsychotic for dementia-related neuropsychiatric symptoms last year.

Outmoded CMS rules that force nursing homes to shoulder onerous administrative burdens — all while they still care for patients -- are straining staff and resources past the breaking point.  We need regulatory changes that address the fundamental barriers preventing many Alzheimer's patients from accessing the care they need.

Jay Reinstein, with Voices of Alzheimer's, speaks on a megaphone during a die in protest on Tuesday, June 13, 2023. The group wants Medicaid to approve coverage of a new fast-tracked Alzheimer's drug.

CMS should drop its reporting requirement for nursing home residents prescribed antipsychotics for dementia-related neuropsychiatric symptoms. While this rule is undoubtedly well-intentioned, it needlessly deters doctors from prescribing the best available treatments to these patients. The agency also needs to recognize that off-label antipsychotic prescriptions are still extremely common for people suffering from Alzheimer's — and adjust its regulations accordingly.

Patients are individuals, not statistics

By treating patients as individuals rather than statistics, the federal government can empower caregivers to manage difficult behaviors using every appropriate tool at their disposal. Both patients and struggling frontline workers deserve a system that facilitates ethical, person-centered care.

Too often, providers want to help patients living with neuropsychiatric symptoms of Alzheimer's disease, but feel bounded by bureaucracy. It's time for policymakers to get out of the way.

Jay Reinstein, the former assistant city manager of Fayetteville, NC, is living with Alzheimer's Disease. He serves on the board of the Alliance for Aging Research.