By Amy Luther, Communications and Policy Intern.
Alzheimer’s disease (AD) is a degenerative and irreversible brain disorder, which progressively destroys memory and thinking skills. It is the most common form of dementia (an umbrella term describing a functional decrease in thinking, memory, and social abilities). Although AD is frequently diagnosed in older adults, it is not a normal part of the aging process.
June is Alzheimer’s & Brain Awareness Month, a time to bring awareness to and expand education around AD and brain health. More than 55 million people worldwide are living with Alzheimer’s disease or related dementias (AD/ADRD), including the more than 6.5 million Americans. Approximately two-thirds of Americans with AD are women — highlighting a current gap in research, treatment, and care that the Society for Women’s Health Research (SWHR) and many others are committed to addressing.
Risk Factors and Prevalence
While there is no single cause for Alzheimer’s disease, it develops based on multiple factors, including one’s genetics, lifestyle, and environment. Although age is not a cause for AD, it is the most important known risk factor; as age increases, so does the likelihood of the disease. Similarly, those who have a family member with AD are more likely to develop it in their lifetime. Many risk factors associated with AD are similar to those of cardiovascular disease, such as smoking and diabetes. While AD already impacts a significant portion of the population in the United States and across the globe, the number of Americans with AD is expected to double every five years in those 65 and older, as the population ages.
AD/ADRD disproportionately affects women and minorities, with two-thirds of people with AD being women. These disparities differ across subpopulations of women: 14% of African American women and 12% of Hispanic women over 65 have AD, compared to only 10% of non-Hispanic, 9% of Native American, and 8% of Asian American women. Emerging evidence suggests that relative to all men and non-Hispanic women aged 65 and older, African American and Hispanic women have the first and second highest prevalence of AD/ADRD, respectively.
Progression of Alzheimer’s Disease and Related Dementias
AD can be understood in stages of mild, moderate, and severe, and it is often diagnosed during the mild stage, when signs and symptoms include memory loss, poor judgement, lack of initiative, repeating questions, wandering or getting lost, mood or personality changes, increased anxiety and/or aggression, among other traits. Signs of the moderate stage often involve increased memory loss and confusion, challenges coping with change, inability to learn new things, and problems recognizing loved ones. Lastly, symptoms of AD’s severe stage can include the inability to communicate, weight loss, and skin infections. While AD is thought to begin 20 years or more before symptoms arise, for some people, the progression between stages is quite rapid.
As progression and presentation of AD differs from person to person, it also differs between the sexes. In general, women not only show more outward signs of AD/ADRD than men, but women’s health also declines faster than men’s. AD is the fifth leading cause of death for women and eighth leading cause of death for men in the United States. AD research must consider sex and gender differences in order to inform risk and treatment options, SWHR points out in this journal article.
Treatment and Care Considerations
There is no known cure for AD, but there are medications and treatments that can help patients and their caregivers manage symptoms and slow down the disease progression – with many more being created and tested daily. While there has been recent discussion and activity around the effectiveness of AD drugs, it’s crucial that sex and gender are being considered in these studies. To advance this work, SWHR provided comments to the Centers for Medicare & Medicaid Services (CMS) in 2022 regarding Medicare coverage for monoclonal antibodies and shared comments on a 2021 ICER Effectiveness and Value Draft Evidence Report for aducanumab, a potential treatment of AD. Read more about other potential AD treatments on the SWHR blog here.
Beyond treatment type, many families also face some type of barrier to care access for AD/ADRD, due to health system bias, gaps in cultural competency of clinicians, gaps in health literacy, a lack of trust in health care from the patient, language barriers, technology barriers, or patients being uninsured or underinsured. These barriers are felt deeply by the patients and caregivers alike.
In addition to disproportionately impacting women as patients, approximately two-thirds of AD/ADRD caregivers are women. Of those women, about 19% have had to quit working to dedicate their time to caregiving. As the disease progresses, people with AD often need more and more care. This may originate as providing loving relationships and a supportive environment, but by the severe stages of the disease it can escalate to more challenging and involved roles such as helping with baths and meals. Caregivers are at high risk of experiencing emotional and physical stress during this role, but there are training and educational programs available, aimed at helping caregivers better understand the disease, how to best care for the person with AD/ADRD, and offering an opportunity to share experiences. Hear more about one caregiver’s journey in this video testimonial, by Carmen Morales.
Most everyone is affected by AD/ADRD, with its impacts continuing to ripple out across the economy, health care systems, and our own communities, especially in the lives of women. This Alzheimer’s & Brain Awareness Month, and throughout the entire year, SWHR works to develop and advance research, policy, and education on Alzheimer’s disease and related dementias in women, and improve the quality of life for those living with AD/ADRD and their loved ones.