Alzheimer disease (AD) and related cognitive impairments are often underdiagnosed, undertreated, and undermanaged, limiting opportunities for timely intervention and optimal patient outcomes.1
Researchers in the United States identified key barriers along the patient journey in AD, observing that patients are often resistant to seeking care due to stigma and structural barriers like financial limitations. Clinicians also reported a lack of access to or awareness of screening and diagnostic methods, as well as limited options for effective symptomatic treatments, all of which contribute to delays in timely and effective care.2
Further, the progression of AD increases stress and anxiety not only among patients but also their caregivers, making the AD treatment journey more difficult to navigate.3
In order to address the challenges in AD management, experts suggest a multidomain interdisciplinary approach, combining individual approaches. AD is a multifactorial disease, so understanding its molecular causes, such as oxidative stress and inflammation, in addition to the disease-related plaques and tau pathology, may be crucial to managing the condition.3 While no single therapeutic approach has been identified as “successful” in treating AD, early detection and diagnosis are key to improving disease prognosis.4
Beyond clinical interventions, understanding patient priorities has become a critical focus. Surveys conducted in parts of Europe have indicated that quality of life and overall well-being are top priorities for patients with AD and dementia, irrespective of cognitive impairment progression. Many practices have adopted a patient-centered approach, which incorporates patients’ lived experiences to ease both patient and caregiver burden. However, limitations remain, as the patient voice often remains passive in both care planning and decision-making.2,5
To further explore barriers in the management of AD and potential measures to address these gaps, we spoke with Dylan Wint, MD. Dr Wint is the director of Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas, Nevada, a multidisciplinary center that focuses on providing care for patients with AD and their care partners.
Delayed diagnosis is one of the main barriers to managing AD, with many patients and families being unaware of the early signs and symptoms of the condition. How can providers create awareness among individuals, especially those with risk factors, and encourage them to seek help?
Dr Wint: The first step toward addressing these barriers in AD is provider awareness, which can result in screening individuals for presenting symptoms and cognitive changes that can occur with AD. Patients also need to know why they are being screened and to get a better understanding of the condition, as well as any concerns associated with it.
There is a list of questions called the “review of systems,” which allows patients to know that providers are interested in their cognitive health, as well as in assessing the risk of developing AD or some other type of dementia. This can help to promote awareness among patients.
Can you describe how stigma, denial, and fear associated with AD can be addressed among patients? What kind of resources or referrals can help alleviate or reduce the intensity of these concerns?
Dr Wint: Sometimes, “over labeling” patients, such as telling them prematurely that they may have AD, can contribute to stigmatization. However, it is important to counsel patients about brain health and explain that irreversible degenerative conditions are not the only causes of cognitive change, but that the goal of identifying the cause of these changes is to preserve cognition.
As providers, we need to be clearer about our intentions to reduce complications that patients are concerned about, such as dependency, loss of control, and mobility. Just as we have approached patient care in cancer, HIV, and heart disease in the past in terms of destigmatization, patients with AD need to know that their condition is not a “death sentence,” and can be managed with appropriate support.
Caregivers of patients with AD often have difficulties navigating the health care system and managing the impact of the disease itself. What support can be provided to these individuals to enhance quality of life?
Dr Wint: There are disease-oriented organizations, such as the Alzheimer’s Association and Dementia Society of America, or others, such as the American Association of Retired Persons (AARP), which may be able to provide support to caregivers. In some communities, there are expert centers that can provide information, which is important for caregivers who may not know where and how to access these resources. Providers can also offer information about caregiver counseling and support groups. There are many resources available across the country that can and should be discussed with caregivers of patients with AD.
There are certain clinician-related barriers, including communicating a difficult diagnosis, lack of time, and specialized training, which can affect patient outcomes. What are some measures that can be taken to improve in these areas?
Dr Wint: One of the biggest barriers for providers is lack of confidence in making a difficult diagnosis, such as an AD pathology, which is progressive, degenerative, and incurable. Primary care providers who diagnose AD may not have the typical skillset to do so. However, these skills can be taught and incorporated in medical school and residency programs, but it would take a generalized and nationwide effort — from medical education through continuing medical education for practicing health care professionals — to see changes.
What are some of the lived experiences of patients with AD, and how can a multidisciplinary approach be used to address any patient concerns?
Dr Wint: It is important to recognize that the lived experience of AD is often a lot different than what we picture it to be, and it varies with severity of disease. For example, stigmatization is more common among patients who are in nursing homes or receiving care at home compared with those with mild to moderate stages of the disease.
One of the biggest complications of AD is loss of independence and function. An occupational therapist can help to stabilize or preserve the ability to perform activities of daily living, and a physical therapist can help to develop an exercise program or reduce the likelihood of a fall. Each specialist can perform cognitive rehabilitation among patients in the early stages of the disease. Although we do not have a way to stop the degeneration of the brain, specialists can help in reducing the complications to promote optimal living. In addition, psychologists and neuropsychologists can help with diagnostics, social services can offer caregiver support, and dieticians can help with eating concerns that may arise in early AD.
References:
- Reiss AB, de Levante Raphael D, Chin NA, Sinha V. The physician’s Alzheimer’s disease management guide: early detection and diagnosis of cognitive impairment, Alzheimer’s disease and related dementia. AIMS Pub Health. 2022;9(4):661-689. doi:10.3934/publichealth.2022047
- Monfared AAT, Stern Y, Doogan S, Irrizarry M, Zhang Q. Understanding barriers along the patient journey in Alzheimer’s disease using social media data. Neurol Ther. 2023;12(3):899-918. doi:10.1007/s40120-023-00472-x
- Vu M, Mangal R, Stead T, Lopez-Ortiz C, Ganti L. Impact of Alzheimer’s disease on caregivers in the United States. Health Psychol Res. 2022;10(3):37454. doi: 10.52965/001c.37454
- Ogbodo JO, Agbo CP, Njoku CP, et al. Alzheimer’s disease: pathogenesis and therapeutic interventions. Curr Aging Sci. 2022;15(1):2-25. doi:10.2174/1874609814666210302085232
- Villarejo-Galende A, Garcia-Arcelay E, Pinol-Ripoll G, et al. Quality of life and the experience of living with early-stage Alzheimer’s disease. J Alzheimers Dis. 2022;90(2):719-726. doi:10.3233/JAD-220696