By Jim Herlihy | Alzheimer’s Association
Just as new treatments approved by the U.S. Food and Drug Administration (FDA) are emerging that offer the first promise of progress against Alzheimer’s in the 117 years since the disease was initially diagnosed, communication between primary care physicians (PCPs) and older adult patients is typically lacking — missing a critical first step toward diagnosis and potential treatment.
The 2023 Alzheimer’s Disease Facts and Figures report, issued by the Alzheimer’s Association, offers new insights from patients and PCPs on barriers that impede earlier discussion of cognitive concerns.
Focus groups revealed that many people with subjective cognitive decline (self-reported memory concerns) do not discuss these symptoms with their health care providers. In turn, nearly all physicians (97 percent) wait for patients to make them aware of symptoms or request an assessment.
The new Alzheimer’s Association report estimates that 6.7 million people in the U.S., including 76,000 Coloradans, are living with Alzheimer’s dementia. This year, the national cost of caring for individuals living with Alzheimer’s or other dementias is projected to reach $345 billion — a $24 billion increase from a year ago.
“Providing the best possible care for Alzheimer’s disease requires conversations about memory at the earliest point of concern and a knowledgeable, accessible care team that includes physician specialists to diagnose, monitor disease progression and treat when appropriate,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer. “For the first time in nearly two decades, there is a class of treatments emerging to treat early-stage Alzheimer’s disease. It’s more important than ever for individuals to act quickly if they have memory concerns or experience symptoms.”
Over the past 18 months, the FDA has approved two medications: aducanumab (Aduhelm) and lecanemab (Leqembi) for treatment of early-stage Alzheimer’s disease.
Increasing incidents of Alzheimer’s and memory concerns
The number of people across the U.S. living with Alzheimer’s disease has increased to 6.7 million, and that total is projected to rise to 13 million by 2050. With the aging of the baby-boomer cohort, the number of people in the U.S. with Alzheimer’s age 85 and older is projected to increase from 2.4 million in 2023 to 6.7 million in 2060.
Separately, a survey of Americans age 45 and older reported that nearly 10 percent experience subjective cognitive decline (SCD): self-perceived worsening of or more frequent difficulties with thinking or memory. For some people, this is normal aging or a sign of other underlying health conditions, but, for others, these symptoms can be a warning sign of developing mild cognitive impairment (MCI), which can lead to Alzheimer’s.
Of those 10 percent who reported SCD, more than half (54 percent) had not consulted a health care professional about their symptoms. Even when symptoms interfere with daily functioning, 41 percent had not talked with a health care provider.
Key reasons cited by patients for their reluctance to talk with PCPs about their concerns include:
• Emotional reactions and limited vocabulary impede discussions. Participants said watching a family member’s struggles with Alzheimer’s and other dementia made them more fearful, yet, at the same time, more tolerant of their cognitive problems.
• Perceived risks seem to outweigh benefits. Many participants believed their memory or thinking issues were part of “normal” aging, and feeling scared or anxious about the possibility of a diagnosis often resulted in avoidance and denial.
• Assumptions about what doctors will say and do. Many participants assume their doctor’s first response would be to take a medication-based approach. Across individual focus groups, people with SCD expressed a desire for care options: inclusive, culturally appropriate conversations and shared decision-making with their care team.
Concerns in the health care community
The reluctance of people experiencing memory concerns to speak with their physician is reflected in the reactions of those physicians. Even though the vast majority (85 percent) of Alzheimer’s diagnoses are made by PCPs, nearly 40 percent of those PCPs surveyed by the Alzheimer’s Association report that they were “never” or “only sometimes” comfortable making a diagnosis. And 50 percent said they did not feel adequately prepared to care for individuals who had been diagnosed.
Given that discomfort and uncertainty, almost one-third of PCPs surveyed reported referring patients to specialist providers, despite the fact that over half (55 percent) of PCPs said there were not enough specialists in their area to meet demands. The situation is worst in small cities (63 percent) and rural areas (71 percent).
In Colorado, there were 96 geriatricians in 2021. That number will need to more than triple to 289 by 2050 in order to serve just 10 percent of the state’s population age 65 and older.
Key reasons cited by PCPs for their reluctance to talk about their concerns with patients include:
• PCPs hesitate to initiate conversations about cognitive decline and often wait until family members bring it to their attention. PCPs view family members as influential and critical partners in care, often relying on them to initiate conversations about memory and thinking problems.
• Concerns about follow-up care given the shortage of specialists and referral options.
Much of the burden for caring for loved ones living with dementia falls on family and friends: unpaid caregivers. In 2022, more than 11 million caregivers nationwide provided unpaid care for people with Alzheimer’s or other dementias, providing an estimated 18 billion hours of unpaid assistance — a contribution valued at $339.5 billion.
In Colorado alone, 160,000 unpaid caregivers provided 186 million hours of care in 2022 valued at $4.4 billion.
Surveys of unpaid caregivers reported the following impacts on them:
• 59 percent report emotional stress due to caregiving.
• 38 percent report physical stress.
• The prevalence of depression is higher among dementia caregivers (30-40 percent) when compared to caregivers for other conditions such as schizophrenia (20 percent) or stroke (19 percent).
• The prevalence of suicidal ideation in dementia caregivers with a mean age of 64 was 32 percent compared with a 2.7 percent rate in all U.S. adults age 56 and older.
To learn more about programs and services provided at no charge by the Alzheimer’s Association, go to www.alz.org or call the association’s free 24/7 helpline at (800) 272-3900.