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Women and Alzheimer’s Disease: The Facts Behind the Headlines

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By Michelle M. Mielke, PhD, Mayo Clinic, SWHR Interdisciplinary Network on Alzheimer’s Disease Member

In the last few years, several reports have placed women at the forefront of Alzheimer’s disease (AD). These reports have generated misleading headlines stating that women are at greater risk of developing AD compared to men. However, the numbers behind these headlines are not clear. There has also been little discussion about risk factors for AD that may be more important for women than men. Below is some clarity on what the phrase “women are at greater risk” means and some AD risk factors that have been found to be stronger for women than men. Notably, women are more than twice as likely as men to provide care for affected family members [1]. Therefore, it is important to also understand AD risk factors that are stronger for men.

Are women at greater risk of developing AD?

The total number of women with AD is greater than the total number of men with AD [2]. The main reason for this is that age is the biggest risk factor for AD. Women live longer than men, therefore there are more women at older ages when the development of AD is most likely.

However, whether women are actually at greater ‘risk’ compared to men is not clear. For example, if you look at women and men of the same age, say 65 or even 85 years old, and compare their risk of developing AD over three years, virtually all studies from the U.S. suggest that women are not more likely to develop AD than men. The studies reporting that women are at greater risk of AD used data from European populations [3, 4].

Oftentimes, studies from the U.S. suggest that men may be at slightly greater risk up to the age of 75, women and men have the same risk from ages 75-84, and women at slightly greater risk after the age of 85. It is clear that these differences are not significantly different, therefore, headlines stating that women are at greater risk refer specifically to the total number of women with AD, which is partially explained by the fact that women live longer.

What risk factors are important?

While we cannot control our genes, there are modifiable risk factors for AD that we can address. Unfortunately, most studies of AD risk factors combine women and men, and do not attempt to identify risk factors that are more common or stronger among women versus men.

There is an ongoing push to highlight the need for this kind of research, and we are now beginning to identify some risk factors that vary in strength for men and women.

Education. Low socioeconomic status, education, and occupational attainment are risk factors for AD in both women and men. Due to women having historically less support to obtain higher education, the overall effect of this risk factor appears to be greater for women [3]. The increasing education levels and occupational attainments of women over the last few decades may be one explanation for why the incidence of dementia may be declining more for women [5, 6]. Education is not solely attained in the first two decades of life, therefore continuing one’s education through formal or informal classes during middle age and beyond retirement, can contribute to building up brain reserve. Social interactions can also be beneficial to brain health.

Cardiovascular risk factors. A diagnosis of hypertension, high cholesterol, and diabetes in mid-life has been associated with a greater risk of developing AD for both women and men, but the risk for women is greater than for men [e.g., 7]. Therefore, it is critical for women to make a conscious effort to prevent these risk factors through diet, exercise, weight management, and adequately treating them when they occur.

Hormonal therapies. Following data published by the Women’s Health Initiative study, which suggested that hormonal therapies were associated with an increased risk of dementia and cardiovascular disease in the mid-1990s, the frequency of hormonal therapies drastically decreased. However, an important caveat to this study was that women were randomized to the use of hormones an average of 10 years after menopause. It is now thought that initiation of hormones several years after menopause may increase the risk of adverse outcomes [8]. Recent randomized controlled trials of healthy women that start using hormones within 3 years of menopause have not found an increased risk of dementia or cognitive decline [9]. This research suggests that many women can safely use hormonal treatments for menopausal symptoms over short durations and that the treatments do not have adverse effects on memory or risk of AD. The ultimate decision to either start or stop these therapies should be based on a collaborative discussion between a woman and her healthcare provider.

Women who have had one or both ovaries removed prior to age 45 are also at an increased risk of developing AD. Research suggests that hormonal use up to the age of natural menopause (around 51 years of age), will reduce this increased risk [10].

Never married/widowed. Compared to women, men who have never married or are widowed, have a greater risk of developing AD [e.g., 11]. A potential reason for this consistent observation is that women are often the ones responsible for the healthcare of their family (e.g., getting kids and partners/husbands to doctors for regular check-ups, assuring everyone has a healthy diet, etc.), sometimes at the expense of their own health. Women also typically lead a couple’s engagement in social activities, which are beneficial for cognition. While these notions are a bit stereotypical and not true of all situations, they should not be ignored. Caregivers of older, single, or widowed men should be cognizant of this difference, and in turn help maintain regular check-ups and engagement in some type of social activity.

There is still more to be done in investigating new AD risk factors and discerning how established risk factors vary by gender. The Society for Women’s Health Research’s newly launched Interdisciplinary Network on Alzheimer’s Disease is committed to advocating for these goals in order to improve prevention, early detection, management, and care.

References

  1. Kasper JD, Freedman VA, Spillman BC. Disability and Care Needs of Older Americans by Dementia Status: An Analysis of the 2011 National Health and Aging Trends Study. U.S. Department of Health and Human Services. April 2014. Available at: https://aspe.hhs.gov/report/disability-and-care-needs-older-americans-dementia-status-analysis-2011-national-health-and-aging-trends-study. Accessed February 28, 2017.
  2. 2014 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 2014. 10(2): p. e47-92.
  3. Mielke MM, Vemuri P, Rocca WA. Clinical epidemiology of Alzheimer’s disease: assessing sex and gender differences. Clinical Epidemiology, 2014. 6: p. 37-48.
  4. Edland SD, Rocca WA, Petersen RC, et al., Dementia and Alzheimer disease incidence rates do not vary by sex in Rochester, Minn. Archives of Neurology, 2002. 59(10): p. 1589-1593.
  5. Langa KM, Larson EB, Crimmins EM, et al., A comparison of the prevalence of dementia in the United States in 2000 and 2012. JAMA Internal Medicine, 2017. 177(1): p. 51-58.
  6. Matthews FE, Arthur A, Barnes LE, et al., A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet, 2013. 382(9902): p. 1405-1412.
  7. Pankratz VS, Roberts RO, Mielke MM, et al., Predicting the risk of mild cognitive impairment in the Mayo Clinic Study of Aging. Neurology, 2015. 84(14): p. 1433-1442.
  8. Brinton RD. The healthy cell bias of estrogen action: mitochondrial bioenergetics and neurological implications. Trends in Neurosciences, 2008. 31(10): p. 529-537.
  9. Gleason CE, Dowling NM, Wharton W, et al., Effects of hormone therapy on cognition and mood in recently postmenopausal women: findings from the Randomized, Controlled KEEPS-Cognitive and Affective Study. PLoS Medicine, 2015. 12(6): p. e1001833.
  10. Rocca WA, Grossardt BR, Shuster LT. Oophorectomy, menopause, estrogen treatment, and cognitive aging: clinical evidence for a window of opportunity. Brain Research, 2011. 1379: p. 188-198.
  11. Miech RA, Breitner JC, Zandi PP, et al., Incidence of AD may decline in the early 90s for men, later for women: the Cache County study. Neurology, 2002. 58(2): p. 209-218.
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Who Should Be Screened For Sleep Apnea? The Answer Is Not Always Obvious

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By Rebecca Nebel, PhD, Assistant Director of Scientific Programs at SWHR

There is insufficient current evidence to assess the benefits and harms of screening for obstructive sleep apnea in asymptomatic adults [1], according to an assessment recently released by the United States Preventative Services Task Force (USPSTF). USPSTF, an independent, volunteer panel of national experts in prevention and evidence-based medicine, makes recommendations about the effectiveness of specific preventive care services for patients. USPSTF’s finding also applies to individuals with sleep apnea who are not aware of their symptoms or do not report symptoms as a concern. This is troubling, as it may impede primary care providers from discussing the signs and symptoms of obstructive sleep apnea (which we will refer to as sleep apnea) with their patients.

Sleep apnea affects 34 percent of men and 17 percent of women [2]. It not only increases the risk for a number of cardiovascular and metabolic diseases (e.g. heart disease, stroke, and diabetes), but also for motor vehicle crashes and mortality [1].

Data shows that the delay between development of symptoms and a sleep apnea diagnosis can be upwards of 7 to 10 years [3, 4]. This delay occurs despite many visits to primary care providers [3]. Many individuals with sleep apnea do not report “textbook” symptoms of sleep apnea, which include excessive daytime sleepiness and snoring. For example, one study found that over one-third of patients with moderate or severe sleep apnea reported excessive daytime sleepiness [5, 6]. This suggests that many individuals with sleep apnea would not necessarily report “textbook” symptoms to their primary care providers. In light of USPSTF’s recent statement about screening for sleep apnea, it is unlikely that these individuals would be viewed as candidates for such an evaluation.

There is also a need to address sex and gender differences in sleep apnea symptoms. Sleep apnea is a widely under-recognized disorder, particularly in women. Studies estimate over 90 percent of women with sleep apnea are not diagnosed [7]. One reason for this under-diagnosis is that many women do not have “textbook” symptoms and are more likely to report non-“textbook” symptoms such as fatigue, insomnia, and mood disturbances [8, 9]. Healthcare providers may not recognize these signs of sleep apnea, which can lead to misdiagnosis and mistreatment. Consequently, it is important to raise awareness of the differences in sleep apnea symptoms between women and men. USPSTF does not address the explicit need for improving recognition (and ultimately prevention and treatment of sleep apnea) in women, despite evidence that women are at high risk for sleep apnea related health problems, such as cognitive impairment [10] and heart failure [11]. Healthcare providers may continue to miss proper diagnosis in women unless they take sex and gender differences in sleep apnea symptoms into account during primary care visits.

Pregnant women are explicitly excluded from USPSTF’s recommendation. Pregnancy is often a time where sleep apnea is unmasked or becomes exacerbated [12]. Sleep apnea during pregnancy increases the risk for adverse outcomes for both mother and baby, including preeclampsia, gestational diabetes, preterm birth, NICU admission, and maternal death [12, 13].

Because current screening tools may not be sensitive to measuring how sleep apnea presents itself in pregnant women and women in general, it is important that healthcare providers be vigilant towards non-“textbook” symptoms in women across their lifespan. It is crucial for primary care providers to ascertain a patient’s medical history, including sleep apnea symptoms, and to recognize that “textbook” symptoms as well as non-“textbook” symptoms (insomnia, fatigue, mood disturbances) all may be indicators of sleep apnea.

The Society for Women’s Health Research Interdisciplinary Network on Sleep is committed to promoting awareness of sex and gender differences of sleep and circadian rhythms across the lifespan, and the impact they have on health and well-being. Learn more about the Sleep Network here.

References

  1. US Preventive Services Task Force., Screening for obstructive sleep apnea in adults: US Preventive Services Task Force recommendation statement. JAMA, 2017.
  2. Peppard, P.E., et al., Increased prevalence of sleep-disordered breathing in adults. American journal of epidemiology, 2013. 177(9): p. 1006-1014.
  3. Rahaghi, F. and R.C. Basner, Delayed diagnosis of obstructive sleep apnea: don’t ask, don’t tell. Sleep and Breathing, 1999. 3(04): p. 119-124.
  4. Redline, S., et al., Patient Partnerships Transforming Sleep Medicine Research and Clinical Care: Perspectives from the Sleep Apnea Patient-Centered Outcomes Network. Journal of clinical sleep medicine, 2015. 12(7): p. 1053-1058.
  5. Carter, G.S., Screening for Improvement of Health Outcomes in Asymptomatic Obstructive Sleep Apnea. JAMA neurology, 2017.
  6. Young, T., et al., Sleep disordered breathing and mortality: eighteen-year follow-up of the Wisconsin sleep cohort. Sleep, 2008. 31(8): p. 1071-1078.
  7. Young, T., et al., Estimation of the clinically diagnosed proportion of sleep apnea syndrome in middle-aged men and women. Sleep, 1997. 20(9): p. 705-706.
  8. Kump, K., et al., Assessment of the validity and utility of a sleep-symptom questionnaire. American journal of respiratory and critical care medicine, 1994. 150(3): p. 735-741.
  9. Valipour, A., et al., Gender-related differences in symptoms of patients with suspected breathing disorders in sleep: a clinical population study using the sleep disorders questionnaire. Sleep, 2007. 30(3): p. 312.
  10. Yaffe, K., et al., Sleep-disordered breathing, hypoxia, and risk of mild cognitive impairment and dementia in older women. JAMA, 2011. 306(6): p. 613-9.
  11. Roca, G.Q., et al., Sex-Specific Association of Sleep Apnea Severity With Subclinical Myocardial Injury, Ventricular Hypertrophy, and Heart Failure Risk in a Community-Dwelling Cohort: The Atherosclerosis Risk in Communities-Sleep Heart Health Study. Circulation, 2015. 132(14): p. 1329-37.
  12. Louis, J.M., et al., Obstructive sleep apnea and severe maternal-infant morbidity/mortality in the United States, 1998-2009. Sleep, 2014. 37(5): p. 843.
  13. Louis, J., et al., Perinatal outcomes associated with obstructive sleep apnea in obese pregnant women. Obstetrics and gynecology, 2012. 120(5).

 

tired woman

Chronic Fatigue Syndrome: Diagnostic Tests, Treatment, and Prevention Urgently Needed

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By Clarissa K. Wittenberg

This blog was inspired by the good news that the National Institutes of Health (NIH) has doubled its research budget for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, it was shocking to see that the increase was from $7.6 million last year to $15 million this year. This is a very small research budget given that hundreds of thousands, even as high as 2.5 million men, women, and children suffer from this syndrome. Several studies use different criteria for diagnosis making for a wide variance in prevalence. The economic cost of ME/CFS is estimated at $17 to $24 billion annually [1]. NIH is the nation’s premiere biomedical research agency and as such, whatever budget is allotted, its influence adds credibility to the importance of studying ME/CFS.

Comparison: Budgets for Multiple Sclerosis and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The NIH National Institute of Neurological Diseases and Stroke (NINDS) is the lead Institute for both ME/CFS and multiple sclerosis (MS). The 2017 budget for multiple sclerosis (MS) is $98 million, a decline from $115 million in 2016. The number of patients for MS and ME/CFS is similar and like ME/CFS, causation for MS has not been established, although there are accepted treatments for the disease. Both have serious symptoms and can cause severe disability. MS patients have benefited from research, medical treatment and emotional support, but ME/CFS patients continue to struggle. Both disorders need more generous budgets [2], however other disorders need increased funding as well. NIH current funding is at 2016 levels due to a Continuing Resolution and budgets for special projects such as the Cancer Moonshot, which are not yet accounted for. To date, the NIH budget has not kept pace with inflation [3].

NIH Confronts ME/CFS:

“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging. I am hopeful that renewed focus will lead us toward the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed,” said Francis S. Collins. MD, PhD, Director of the NIH [4].

It is encouraging that NIH began an investigational clinical study of ME/CFS in October 2016, to determine new treatments and diagnostic tests in an effort to see if new technologies might aid in the understanding of the condition. Leading up to this effort is an NIH-sponsored Institute of Medicine report (now the National Academy of Medicine) [5], an NIH Pathways to Prevention meeting [6] as well an invigoration of the Trans-NIH ME/CFS Research Working Group. In 2015, NIH began an ME/CFS Special Interest Group to serve as a forum for finding the cause of ME/CFS and identifying clinically valuable treatments. 

What is ME/CFS?

What is this disorder? While the syndrome was long viewed cynically, ME/CFS is now acknowledged as a medical syndrome, not a psychiatric or psychological one [7]. It is not just a state of being tired or exhausted, it is a complicated disorder characterized by extreme fatigue, more intense than what is usually experienced after exhausting physical or mental work. The diagnosis demands the exclusion of other diseases with similar symptoms. ME/CFS fatigue is more comparable to the fatigue caused by radiation, head injuries, or other types of biological assault. Other symptoms are widespread muscle and joint pain, cognitive issues, and even headaches. The symptoms do not subside with rest and it is frequently noted that those who suffer from ME/CFS have higher rates of suicide.

Most people cannot overcome the fatigue through willpower, although there are stories of people with ME/CFS making extraordinary efforts on their best days to continue to carry out their life’s work. Laura Hillenbrand, author of Seabiscuit, and Unbroken: A World War II Story of Survival, Resilience, and Redemption, continued writing despite being homebound by her illness. Blake Edwards, the director of many movies including Pink Panther, worked for almost 15 years despite having ME/CFS. The majority cannot continue their normal lives and this disorder can last for months, years, or even a lifetime.

A Disease with 1,000 Names:

In 1860, the syndrome was identified and named “neurasthenia.” It was from that moment that the name changing began. Sometimes the syndrome was named after a preceding infection, such as “chronic Epstein-Barr syndrome,” “chronic mononucleosis syndrome,” or “atypical poliomyelitis.” It has been named after sites of outbreaks including “Iceland disease,” “Tapanui flu,” and “Lake Tahoe disease.” It has also been named after prominent patients such as Florence Nightingale and Charles Darwin. In 1993, the Centers for Disease Control and Prevention named it chronic fatigue syndrome. The Institute of Medicine report renamed it myalgic encephalomyelitis/chronic fatigue syndrome, however, since muscle pain (myalgic) and brain inflammation (encephlomylitis) are not the main symptoms, a change to systemic exertion intolerance disease or SEID is currently being considered.

The various names contain valuable clues about the nature of the syndrome. Each one in an effort to pin down its causation. Although the large variation in secondary symptoms probably played a role, the biggest mystery is why all these efforts have never connected. This suggests that new investigational and linkage studies such as the NIH clinical trial and the Open Medicine Foundation Big Data Study, conducted with severely ill ME/CFS patients, may offer new insights as they use novel technologies to interrelate genetics, immunology, neurology, sleep research, viral sequelae, and other domains together [8].

Doing Something About It:

Linda Tannenbaum is the CEO/President of the Open Medicine Foundation, which funds the study of ME/CFS and other chronic complex disorders. Tannenbaum learned about ME/CFS when her daughter was diagnosed with the condition. Similarly, Ron Davis, PhD and Professor of Biochemistry and Genetics at Stanford University School of Medicine and Director of the Board of the Open Medicine Foundation learned about the disease when his son was diagnosed with ME/CFS. These families know firsthand how lives are damaged by ME/CFS. The Foundation has begun its Big Data Study of Severe Cases of ME/CFS that will look into finding biomarkers and releasing that information to the scientific community. “Any one of us, regardless of age, can be fine one day and then struck with ME/CFS, and it can last a lifetime,” said Tannenbaum.

Patient Advocacy: A Relentless Force for Change

We live in an age of powerful patient advocacy, with patients now researching their own illnesses, writing blogs, shooting films, lobbying, and forming foundations in order to raise awareness about their conditions. In 2001, Kim Snyder, a highly honored filmmaker, released I Remember Me, as she was recovering from ME/CFS. Her film tells the stories of people with ME/CFS and is also available on YouTube. Unrest, a film by Jennifer Brea, premiered at the 2017 Sundance Festival. It depicts her life story beginning from a vibrant childhood to the sudden onset of ME/CFS while studying for her PhD. She has continued to be a highly visible advocate. Talking about her film, Brea ruefully remembers seeing I Remember Me when she was in high school and thinking, “change was just around the corner.”

These films convey the terrible disability, pain, and social crisis of ME/CFS in a way no written description could. Doctors are often taught via Grand Rounds where patients are presented so medical students can have a real sense of the disease. These films offer a similar opportunity for the public, as well as medical students and researchers.

Solving the Mystery

Improved communications can educate us all, as well as help patients to understand that they are not alone. Important questions such as the reason why the disease is more common in women, would advance the understanding and treatment of ME/CFS. Are men less likely to report this syndrome? Are there differences in treatment offered to women and men?

Clarissa K. Wittenberg was a science writer and senior communication officer at several NIH Institutes and Associate Director for Communications at the National Institute of Mental Health; a special assistant to the Director of the Office of Global Health, Office of the Secretary, HHS; and formerly a consultant for mental and overall health of underserved populations to the Department of Psychiatry and Human Behavior, University of Mississippi Medical Center. She is Creative Director of the Washington Film Institute.

References:

  1. http://www.iom.edu/Reports/2015/ME-CFS.aspx
  2. The Tragic Neglect of Chronic Fatigue Syndrome, Olga Khazan, October 8, 2015, The Atlantic
  3. Inside (the Beltway) Scoop) Jennifer Zeitzer, February 3, 2017) http://faseb.org
  4. NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. NIH News Release, October 29, 2015
  5. Beyond Myalgic Encephalomyelitis/Chronic Fatigue: Redefining an illness, Institute of Medicine, Report Brief, February 2015
  6. Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, NIH Office of Disease Prevention, December 9-10, 2014
  7. Beyond ME/CFS Syndrome: redefining an illness https://www.ncbi.nlm.nih.gov/25695122
  8. Open Medicine Foundation (OMF), End ME/CFS Project Biomarker Discovery: Severely Ill Big Data Study
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