Treating Dementias With Care Partners in Mind

Over 6.2 million people in the US are living with Alzheimer disease and related dementias (AD), which is expected to reach 13.8 million by 2060, assuming current trends.¹ The global population of people living with AD and related dementias (ADRDs) is over 44 million people and expected to double by 2050.² ADRDs are not just a health problem. These are a global health emergency in urgent need of attention and remediation. As the developing world achieves unprecedented life expectancies, ADRD are justifiably being labeled as a global health crisis. Quantifying the devastation and suffering wrought by ADRD upon patients, families, and communities is a heartbreakingly impossible task.

More than 100 years after the first English-language publication describing AD and its pathology,³ care for ADRDs remains primarily symptomatic and woefully inadequate. Delays and controversy have marked the emergence to market of the first disease-modifying therapy (DMT) for AD, which reduces pathologic AΒ plaque burden and slows cognitive decline.⁴ While the search for additional DMTs goes on, adherence to the best use of current options is critical. Although a cure eludes us, as of yet, thoughtful preparation and intervention can reduce the burden of the disease on patients and care partners alike.

Neuropsychiatric symptoms produced by ADRD path-ologies have repeatedly been identified as major sources of morbidity and distress.⁵ Therefore, any attempt to relieve the suffering caused by ADRD requires addressing these behaviors and emotions. Dr. Jeffrey L. Cummings, developer of the most recognized schema for classifying and quantifying these symptoms, contributes to this issue a state-of-the-art update on approaches to Neuropsychiatric Symptoms in Dementia. As he notes, we would like to have more reliable treatments but, until then, we must diligently use the tools at our disposal.

Sundowning and wandering can be frustrating, depressing, and even dangerous.⁶ Rather than unitary phenomena, these behaviors may be idiosyncratic concatenations of symptoms such as restlessness, anxiety, delusions, circadian dysrhythmias, and disinhibition. Unsurprisingly, no single intervention has proven completely reliable in suppressing sundowning or wandering. Multifactorial approaches to Wandering & Sundowning in Dementia, covered by Dr. Aaron Ritter and Taylor Thomas and based on extensive clinical experience and research in ADRD, can significantly enhance quality of life for patients and families plagued by these vexing behaviors.

In the US alone, over 11 million family members and other unpaid care partners provide more than 15.3 billion hours of care to people with dementias each year.¹ For most, this work is done without pay, respect, or gratitude. The care partner’s role in ADRD management, which is literally vital for patients, is often unhealthy and sometimes life-threatening for the care partner.⁷ As medical providers, we do not often enough express our appreciation to caregivers for the countless hours they devote to our patients. Even worse, as former care partner and current advocate Allan S. Vann points out, we routinely fail to guide them to Alzheimer Disease Support Groups and information that they need to navigate a journey that can be as treacherous for them as it is for their charges.

Like most neurologists who treat ADRDs (which, it turns out, is most neurologists), I look forward to a day when Practical Neurology covers ADRDs in its rare syndromes special issue; when trainees say, “I’ve never seen that,” when I ask if their patient might have AD. And, like most of us, I fear I will not see that day. For now, we will have to satisfy ourselves with “Yes, doctor. Things are better, at least for now. Thank you for helping.”