A new report from the Alzheimer’s Association highlights the need for better patient-doctor communication as new treatments for the disease become available.
While recent advancements in treatment of early-stage Alzheimer’s are providing hope to millions living with memory loss and early cognitive decline, a new report finds too often individuals with memory concerns and their doctors are not discussing the issue, missing a critical first step toward diagnosis and potential treatment.
The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report estimates that 6.7 million people 65 and older are living with Alzheimer’s dementia, one of the costliest conditions to society.
This year, the national cost of caring for individuals living with Alzheimer’s or other dementias in the US is projected to reach $345 billion — a $24 billion increase from a year ago.
An accompanying special report, The Patient Journey In an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns.
Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their health care providers. Previous special reports have indicated many people believe their experiences are related to normal ageing, rather than a potential diagnosable medical condition.
Maria C Carrillo, PhD, chief science officer, Alzheimer’s Association, commented: “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.
“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.”
The annual report provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care.
This year it also examines the capacity of the medical specialty workforce essential for diagnosis, treatment and ongoing care for people living with Alzheimer’s and all other dementia.
The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care, especially with the recent FDA accelerated approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the health care landscape for people with early-stage Alzheimer’s or mild cognitive impairment due to Alzheimer’s disease.
Risks outweigh benefits of speaking about memory issues
Many Americans could potentially be eligible for new and emerging treatments, assuming they receive a timely diagnosis and want medical intervention.
Yet most focus group participants said their memory and thinking problems would need to have a significant negative impact on their quality of life or the lives of their family members in order for it to warrant a discussion with their physician.
Concerns about receiving an incorrect diagnosis, learning of a serious health problem, receiving unnecessary treatment and believing symptoms might go away on their own also make people reluctant to broach the topic of cognitive impairment.
Furthermore, most participants said they would be more comfortable talking to a friend about memory and thinking problems than a medical professional.
Different racial and ethnic groups express concerns about care delivery and specific barriers to care, which influences their interactions with healthcare providers. For example, Black Americans, American Indians, Alaska Natives and Hispanic Spanish-speaking Americans strongly preferred holistic approaches to treatment that minimise the use of biomedical interventions or prescription medication.
Black Americans, American Indians and Alaska Natives indicated the presence of historical racism in the medical field, which makes many individuals feel that they do not receive adequate, culturally competent care.
Some participants also indicated that their community’s mistrust of doctors and/or Western medicine prevents them from talking to a doctor.
In addition to reluctance from individuals, the focus groups revealed that PCPs are not proactively asking their patients about cognitive issues either.
PCPs shared that they hesitate to initiate conversations about cognitive decline and will wait until family members bring it to their attention.
PCPs expressed concern about how people will be cared for if an assessment uncovers Alzheimer’s disease or other dementia in light of specialist shortages and few referral options.
Importantly, PCPs view family members as influential and critical partners in care, often relying on them to initiate conversations about memory and thinking problems they observe in their loved ones, making the role of caregivers ever more significant.
“Both physicians and patients need to make discussions about cognition a routine part of interactions,” said Nicole Purcell, D.O., M.S., a neurologist and senior director, clinical practice, Alzheimer’s Association.
“These new treatments treat mild cognitive impairment or early-stage Alzheimer’s disease with confirmation of amyloid, so it’s really important that conversations between patients and doctors happen early or as soon as symptoms occur, while treatment is still possible and offers the greatest benefit.”
Taking action: Navigating early intervention
PCPs shared starting a clinical visit with an informal conversation may provide important cues to help inform a formal cognitive assessment. Short appointment times can make it difficult to notice subtle changes in a patient’s thinking over time, so many PCPs suggested a consistent, standardised process to begin visits would help overcome barriers to initiating conversations independently.
Family members are crucial in facilitating conversations and follow up care for loved one’s memory and thinking issues. In fact, almost all PCPs interviewed learned of their patients’ memory problems when a family member communicated concerns rather than hearing directly from the patients themselves. Many felt the issues were more serious when a relative provided an outside perspective. PCPs noted patients were generally more accepting of their issues and the need to address them when a family member or caregiver attended their visit.
Challenges across the specialist physician workforce
As the prevalence of Alzheimer’s disease and other dementias increases from 6.7 million today to nearly 13 million by 2050, so does the need for a larger paid workforce involved in diagnosing, treating and caring for those living with these diseases.
The special report examined the current specialist physician workforce capacity for Alzheimer’s care in the US.
Emergency medicine specialists see the most patients age 60 or older, as compared to geriatricians, neurologists and neuropsychologists, yet specialists said their neurology and geriatrician colleagues could most effectively diagnose Alzheimer’s disease.
Neurologists and geriatricians are also viewed by other specialists as best able to recommend treatments for Alzheimer’s disease. Geriatricians are viewed as the best able to provide ongoing care for people living with Alzheimer’s.
New treatment advances have generated excitement and hope — as well as many questions — for people living with early-stage Alzheimer’s and MCI due to Alzheimer’s. Whether the approval of treatment options will stimulate more conversations between people experiencing cognitive decline and their health care providers remains to be seen.
However, shortages of geriatricians and neurologists necessary to care for the aging U.S. population — which is expected to grow from 58 million people 65 and older in 2021 to 88 million by 2050 — remains a major challenge.
“If specialists receive an influx of referrals to evaluate new patients for cognitive impairment, the specialist shortage is likely to have the most immediate and obvious impact on people at the early phase of Alzheimer’s disease — those who may be eligible for newly approved treatments,” Purcell said.
Currently, there are more than 140 unique therapies that are being tested in clinical trials that target multiple aspects of Alzheimer’s biology. As the world’s largest non-profit funder of Alzheimer’s research, the Alzheimer’s Association is currently investing more than $320 million in over 1,000 active best-of-field projects in 54 countries, spanning six continents.
Full text of the 2023 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, “The Patient Journey In an Era of New Treatments” is available here .