The patient journey in Alzheimer disease (AD) can often be burdensome and multifaceted, owing to the complex disease pathophysiology and barriers to timely and accurate diagnosis and disease management. A better understanding of concerns and challenges may improve care and optimize outcomes for patients with AD and their families.1,2
In recognition of World Alzheimer Day on September 21, 2024, several professionals in the field spoke about health disparities and barriers to AD care, measures that health care providers can take to address existing issues, and the roles interventions may play in the improvement of care.
Barriers to Alzheimer Patient Care
In 2021, the Alzheimer’s Disease International (ADI) reported that stigma and lack of awareness were the primary barriers to AD diagnosis.3 A survey of patients with AD and their caregivers revealed that lack of access to providers, fears, and high costs were some of the most common challenges, while clinicians reported that their primary concerns included lack of access to specialized diagnostic tools, inadequate knowledge, and a sense of “futility.”1,3
In a 2023 study published in Neurology and Therapy, researchers classified barriers to AD care into 2 categories: concerns with help-seeking behaviors (ie, unwillingness to seek care, inadequate motivation, issues with interpersonal interactions and communication) and structural barriers (ie, financial limitations, geography).1
“
A patient-centered approach is important when it comes to identifying patients at risk for cognitive decline and providing the appropriate support.
The underrepresentation of minority groups in AD clinical trials is not unknown. Barriers to research participation, such as recruitment, disproportionately impact marginalized populations and make it difficult for these patients to participate in research.4
Cardiometabolic health is one of the key factors that intersects with health disparities in AD. Individuals in the United States and United Kingdom with multiple cardiometabolic risks (ie, low high-density lipoprotein cholesterol [HDL-C], central obesity, high systolic blood pressure [BP], and diabetes) have a higher incidence of dementia.5
Michael Bruneau Jr, PhD, the principal investigator of the Clinical Exercise Physiology Lab and associate teaching professor at the Department of Health Science, Drexel University, Philadelphia, Pennsylvania, noted, “The preclinical factors underpinning the prevalence of AD and related dementias appear to be linked to cardiometabolic risk factors and metabolic syndrome as a composite syndrome.”
Factors linked to health disparities can impact AD risk, diagnosis, and management, as well as quality of life (QOL).
Alice Tang, MD/PhD candidate at the University of California San Francisco (UCSF) School of Medicine Bakar Computational Health Sciences Institute, shared an example, explaining, “A patient who is mistrustful of health care due to low health literacy and past experiences with racism or high health care costs may not have a health advocate (eg, primary care provider) for disease management. They may be diagnosed at a later stage after cognitive decline has already affected their relationships.” “Long-term, a patient’s QOL may depend on their ability to perform daily tasks, as well as the quality of their support and caregiving systems (eg, a child taking care of his or her father). If provisioning this care is burdensome, disparities can propagate across generations,” Dr Tang said.
The role of social determinants of health (SDOH) is relevant to patient care and QOL in AD. Socioeconomic status, education, employment, residential segregation, race, and ethnicity are all predictors of AD risk such that they impact health care and caregiver resource access.6
“Care partner burden also affects patient care and QOL, as those with the fewest resources often report greater perceived stress and financial strain, affecting both the person living with AD and their care partner,” Dr Bruneau said.
The Positive Impacts of Interventions
To improve the patient journey and ease patient and caregiver burden in AD, researchers highlighted the importance of understanding the lived experience among various stakeholders.1
“Disparities exist at the individual patient and wider health system level. Disparities also impact methods of intervention and research,” Dr Tang explained. “From a public health standpoint, addressing disparities involves teaching health literacy in schools, encouraging healthy lifestyles, and increasing access to primary care. From a clinical standpoint, addressing disparities involves providing health education to patients, counselling patients on the importance of preventative care, and asking personal questions about patients’ lives.”
Researchers of a 2020 study published in Neurology found that the incidence of AD and dementia in Europe and North America declined by 13% per decade over the last 25 years.7
Alfred Hofman, MD, PhD, Stephen B Kay Family Professor of Public Health and Clinical Epidemiology and chair of the Department of Epidemiology at Harvard TH Chan School of Public Health, Boston, Massachusetts, noted that the potential reason for this downward trend “most likely had to do with the evolving treatment of cardiovascular or stroke risk factors.”
Clinicians must continue to advocate in support of preventive measures and early detection and control of cardiometabolic risk factors.
Dr Bruneau discussed his research laboratory’s use of a resistance exercise training intervention to understand better the associations between traditional cardiometabolic health risk factors (ie, BP, body mass index [BMI], fasting blood glucose, and lipids), cognitive outcomes (ie, Montreal Cognitive Assessment Scale [MoCA]), and QOL measures (ie, 36-Item Short-Form Survey [SF-36]).8
“Our exercise model brings the resistance exercise training to Program of All-Inclusive Care for the Elderly (PACE) in West Philadelphia rather than requiring the participants to come to the Drexel campus. We must also consider barriers to care such as transportation, burden, and safety to ensure the exercise environment is both safe and effective for our participants,” Dr Bruneau said.
Through this program, participants reported benefits such as “climbing stairs with much more ease” and “joints feeling better,” continued Dr Bruneau. Small, but clinically meaningful improvements in weight, BMI, BP, and MoCA scores were observed. Future research, however, must be conducted to fully explore these findings.8
“The resistance training is a unique component to our intervention compared with more traditional community-based walking and aerobic programs,” Dr Bruneau noted. “We strategically collaborated with our community partners during a global pandemic to provide value and improve QOL for participants.”
Other evidence-based interventions, such as the Tailored Activity Program (TAP) and Care of Older People with their Environment (COPE), have also demonstrated improved QOL of patients with dementias and their caregivers. These programs have addressed barriers and health disparities by improving time management, ensuring adequate staff training, and developing additional caregiver resources.9
The Future of AD Care
Researchers have suggested that health care professionals must function as an integrated team to provide care for diverse populations with AD. A patient-centered approach is important when it comes to identifying patients at risk for cognitive decline and providing the appropriate support. A “no-wrong-door” model has been recommended to streamline the diagnosis and management processes for AD, such that clinicians, outreach organizations, public agencies, and payers all collaborate toward mutual AD efforts. This transdisciplinary model may also be applied to other neurologic conditions with unmet needs, such as cerebrovascular and Parkinson diseases.2
Disclosure: One study author reported affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.
link