WOMEN’S BRAIN HEALTH SERIES: Overcoming Barriers to Care for LGBT Elders with Alzheimer’s

Marcy Adelman, Ph.D., is a psychologist in private practice, founding member of the San Francisco LGBT Dementia Care Oversight Committee, a former member of the San Francisco LGBT Aging Policy Task Force, and co-founder and current Board member of Openhouse, an LGBT senior housing and service organization in San Francisco, California.

Jim and Fred have been a couple for thirty-three years. They had been together for fifteen years, when Fred’s personality began to change. But it was another four years before they got the diagnosis: Alzheimer’s.

Alzheimer's-Banner-Draft-2_1For Jim, the news was doubly challenging. He had no idea what to do about the disease. And he didn’t feel confident that service providers would understand their relationship. Jim was really concerned about how doctors, in-home care providers, and others would react to the couple being gay. Would he not be allowed to remain as Fred’s chief caregiver? Because they weren’t legally married, and still are not, would Jim  be prevented from making day-to-day and life-and-death decisions? Might he even  be stopped from being able  to see his partner?

The American public has become very aware and afraid  of Alzheimer’s. More than 5 million individuals live with it, and that number is expected to triple over the next few decades as more people are living longer (Alzheimer’s Association, 2015). Alzheimer’s is the sixth leading cause of death in the United States and remains the only leading cause of death for which there is no cure (Alzheimer’s Association, 2015).

Yet for LGBT older adults, Alzheimer’s can evoke a double stigma: living with dementia and being LGBT (Adelman, Nolan, and Haskell, 2013). As with everyone else, LGBT older adults fear losing themselves and their memories, being embarrassed or devalued, or simply being avoided. Mostly, people are frightened of becoming completely dependent upon the care of others. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Empathy Gap: Americans Impacted by Alzheimer’s Disease and Candidates Running for National Office

Mary WoolleyPresident and CEO Research!America

Mary Woolley
President and CEO
Research!America

Almost two-thirds of Americans with Alzheimer’s and other dementias are women. In addition, more women than men shoulder the burden of caring for someone with dementia, according to the Alzheimer’s Association. A recent poll commissioned by the Alzheimer’s Association found that more than half (53%) of women with children under age 18 felt that caregiving for someone with Alzheimer’s disease was more challenging than caring for children. By the year 2050, it is estimated that 13.8 million people age 65 and older in the U.S. will have Alzheimer’s – equivalent to the entire combined population of New York, Los Angeles and Dallas. Given the prevalence of Alzheimer’s and the emotional toll of the disease, it is puzzling that so many candidates running for national office have been essentially silent about what they would do, if elected, to combat this debilitating disease.

Maybe caregivers are just too exhausted, and patients unable, to be stronger advocates for making defeat of this dreadful disease a priority for candidates. But even if they aren’t hearing about Alzheimer’s from people in their own extended families and from among their constituents, there’s another reason candidates should care: Alzheimer’s will bankrupt our nation. A recent Alzheimer’s Association report calculated that total annual payments for health care, long-term care and hospice care for people with Alzheimer’s disease and other dementias are projected to increase from $236 billion in 2016 to more than $1 trillion in 2050.

Alzheimer's-Banner-Draft-2_1Alzheimer’s won’t go away by itself.  As we know from the history of epidemics and public outcry to find solutions – such as the HIV/AIDS movement – it takes robust investments in research and pro-innovation policies before we realize the ability to reverse the trajectory.  Policymakers are key to both those requirements. A majority of Americans (80%) say it is important for the next President and the next Congress to assign a high priority to putting health research and innovation to work to assure continued medical progress, according to a survey commissioned by Research!America, but poll numbers don’t speak as loudly as an advocate’s voice. There simply aren’t enough advocates speaking out to candidates as yet. This reality is demonstrated in additional survey data, which shows that fewer than a quarter of Americans say candidates running for Congress listen to and understand their health concerns, and one-third express similar views for presidential candidates. This adds up to an empathy gap in which voters simply do not believe candidates care about their best interests. (more…)

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WOMEN’S BRAIN HEALTH SERIES: The Health e-Brain Study: Reflecting on the Cognitive Health of the Caregiver

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Meryl Comer

Today’s post acknowledges World Alzheimer’s Day by calling attention to the caregivers. Dr. Lathan is the Founder & CEO of AnthroTronix and Meryl Comer, a caregiver who has shared her personal journey through her book, Slow Dancing with a Stranger, is President, Geoffrey Beene Foundation Alzheimer’s Initiative and Founding Partner, 21st Century Brain Trust® and board member of UsAgainstAlzheimer’s.  A huge shout out to Lynn Posluns, President, Women’s Brain Health Initiative, headquartered in Toronto.  Lynn has given us permission to share today’s post which will run in the October 17th issue of the Women’s Brain Health Initiative’s Mind Over Matter® magazine. 

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Corinna Lathan, PhD

Every time we go to the doctor’s office, our height, weight, temperature, and blood pressure are meticulously checked and recorded. Those vital signs are important, but we seem to be missing the most important vital sign of all – our brain vital. One in four Americans suffers from conditions that affect brain function such as depression, post-traumatic stress, or Alzheimer’s. And, all of us experience times when our brain is not operating at maximum efficiency.

These same observations apply when caregivers of loved ones with dementia look in the mirror. Over time we forget who we are and ignore early warning signs about our own brain health status. What if there was a “mobile mirror” we could access on our smart phones anytime/anywhere that: 1) objectively measures and feeds-back an early alert on our personal cognitive vitality; 2) links back to a research study that tracks and validates the impact of caregiving; and 3) turns our collective experience into research-worthy data to improve health outcomes and impact policy.

The Health-eBrain Study is a mind-meld of researchers in mobile health innovations, the non-profit, BrightFocus® Foundation, and the Geoffrey Beene Foundation Alzheimer’s Initiative. (more…)

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WOMEN’S BRAIN HEALTH SERIES: The Critics Don’t Count

Glenna Crooks

Stories of the devastation faced by patients and families with Alzheimer’s disease abound. Economic costs are consequential and the social and emotional costs, incalculable.

Thankfully, I’ve not been touched by Alzheimer’s but like most people am aware of the suffering it causes. For that reason, I was delighted to be asked by a clinical society to help them solve a problem: not enough specialists are available to diagnose and adequately treat the growing number of patients. Primary care clinicians need to join in. The specialists had a three-step plan to make that a reality:

  • In the first step, specialists in psychiatry and neurology reviewed Alzheimer’s practice guidelines, tailoring them for primary care.
  • In the second step, specialists and primary care clinicians – in Family Medicine, Internal Medicine, Nursing and Social Work – met to review the tailored guidelines to assure they were easy to follow.
  • In the third step, the revised guidelines were made widely available to primary care clinical groups in medicine, nursing and social work. Even families were informed, to help them participate better as care partners.

You’ve seen these guidelines, right?

(more…)

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Launching the Disruptive Women Series on Brain Health: “The Brain is Wider than the Sky”

Robin Strongin

Alzheimer's-Banner-Draft-2_1This week we launch our series on Women’s Brain Health.  The statistics are sobering, the diseases cruel, and the percentage of women disproportionately affected by dementia, Alzheimer’s Disease, and other neurologic disorders are staggering and growing.  So too, the number of women who become caregivers– their physical, emotional and financial health draining as a result.  At the same time, the number of remarkable women contributing to the research pipeline and policy apparatus is breathtaking.  Over the next two weeks, we will introduce you to the exciting work these women are contributing to the field.  But before we dive into the turbulent waters, I am sharing the sublime poetry of Emily Dickinson.  For me personally, I find it helps to frame the science through the lens of the arts. This particular poem spoke to me about the wonder that is the brain.

Emily Dickinson (1830–86).  Complete Poems.  1924.

THE BRAIN is wider than the sky,
For, put them side by side,
The one the other will include
With ease, and you beside.

The brain is deeper than the sea,
For, hold them, blue to blue,
The one the other will absorb,
As sponges, buckets do.

The brain is just the weight of God,
For, lift them, pound for pound,
And they will differ, if they do,
As syllable from sound.

Dickinson, Emily. The Complete Poems of Emily Dickinson. Boston: Little, Brown, 1924; Bartleby.com, 2000. www.bartleby.com/113/.

Read all of the posts in this series:







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Most Hospitals Offer Patients Electronic Access to Medical Records

Jane Sarasohn-Kahn

This post was originally published on http://www.healthpopuli.com/ on September 14, 2016.

Percent-of-hospitals-that-enable-patients-to-view-download-and-transmit-HI-grew-7x-between-2013-2015

The number of hospitals offering patients electronic access to their health information grew seven times between 2013 and 2015. Electronic health records access has gone mainstream in America, according to the latest findings by The Office of the National Coordinator for Health Information Technology (ONC-HIT).

The data are detailed in Electronic Capabilities for Patient Engagement among U.S. Non-Federal Acute Care Hospitals: 2012-2015, an ONC Data Brief.

Two in three U.S. patients can now view, download, and transmit their personal health information, shown in the bar chart. This hockey-stick growth, from 10% in 2013 to 69% in 2015, results from the HITECH Act, part of the Stimulus Bill which provided financial incentives to health care providers to adopt and implement electronic health records (EHRs). (more…)

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Transgender healthcare coverage: Prevalence, recent trends, and considerations for payers

TransGender_Equality-Symbol_black-and-whiteThe post originally ran on Milliman, Inc. on July 28, 2016.

Recently, the concept of gender identity and what it means from a health insurance coverage perspective has been receiving increased attention. This paper lays out recent trends, including recent federal and state laws affecting health insurance benefits for transgender individuals. We also examine health insurance clinical coverage policies related to gender reassignment surgery as well as prevalence estimates. Finally, we provide future considerations for healthcare payers, including appropriately capturing data relevant to the healthcare needs of the transgender population.

According to the U.S. Department of Health and Human Services (HHS), the term “gender identity” is defined as:

…an individual’s internal sense of gender, which may be different from an individual’s sex assigned at birth. The way an individual expresses gender identity is frequently called ‘‘gender expression,’’ and may or may not conform to social stereotypes associated with a particular gender. Gender may be expressed through, for example, dress, grooming, mannerisms, speech patterns, and social interactions…an individual has a transgender identity when the individual’s gender identity is different from the sex assigned to that person at birth; an individual with a transgender identity is referred to in this part as a transgender individual.1

In most cases, to qualify for gender reassignment surgery, a patient must have a persistent, well-documented diagnosis of gender dysphoria. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM), 5th Edition (DSM-5), gender dysphoria (formerly referred to as gender identity disorder) occurs when there is a noticeable difference between the gender an individual expresses or believes he or she is and the birth gender, and when this disparity is persistent for at least six months.2 This difference, when unresolved, may lead to clinically significant mental distress, which is a defining characteristic of gender dysphoria. It is important to note that only a subset of individuals who are transgender (or gender non-conforming) will be diagnosed as having gender dysphoria because not all individuals who are transgender will experience clinically significant mental distress that can be diagnosed as gender dysphoria.

The need for healthcare services for the transgender population, including reassignment surgery, is not new. One of the first documented cases took place in 1952, when a former U.S. Army private underwent male-to-female (MTF) surgery in Denmark. In more recent years, increased awareness, changing public perceptions, evolving research and medical evidence, changing regulatory environments, and potential changes in demand may create a “tipping point” to expand the availability of healthcare services and health insurance benefits for the transgender population. Medicare, the Federal Employee Health Benefits Program (FEHBP), state Medicaid programs, and commercial insurers are all reexamining coverage policies and changing them in light of evolving standards of care and laws and regulations. Health insurers will need appropriate data and analytics to support changes in coverage policies and understand their impacts. (more…)

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Soldiers Period

Shout out to 2016 Disruptive Woman to Watch Patti Lee Stotter! Not only has she taken part in an important panel on Capitol Hill, now she’s used her artistic talents to do it again.

Don’t just take out word for it…

“Soldiers Period is a wildly hilarious short film that addresses a serious issue about women in the military.  This intimate and natural biological function has not stopped women from great achievements in all walks of life and especially serving with valor and distinction in the battle-field. I absolutely adore it.  Can I show it at our women veterans summit in September?” – Lourdes E. Alvarado-Ramos, Washington State VA

“It has great spirit….  Meanwhile, tell these women — if they don’t already know – that the days at the onset of menstruation are those in which the female hormone is at its lowest ebb; thus you might say that women are then the most like what men are like all month long!​” – Gloria Steinem

SOLDIERS PERIOD from Rock Stotter on Vimeo.

#soldiersperiod

 

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September is Neonatal Intensive Care Awareness Month

Glenna Crooks

Project Sweet Peas, the founders of Neonatal Intensive Care Awareness Month, joined with other organizations in 2014 to honor the families whose babies are cared for neonatal intensive care units and to recognize the professionals who provide care when life’s first moments are the hardest.

In the US, 10% of babies experience care in neonatal intensive care units. That means you probably know at least one family. And, maybe you know one of the professionals, too.

Let them know, OK?

nicuawareness

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The Gender Breakdown on Research & Health

During these last days of summer, we here at Disruptive Women are reflecting on posts from when we first launched—it’s fascinating to see how far we’ve come and where we still have to go—to push—to Disrupt. After all, a woman’s work is never done. We originally published this post on November 16, 2015.

mwheadshotcolor2012When it comes to health and wellness, more than half of Americans, men and women alike, say that their family’s health has been improved by medical research, (55% men; 51% women).  Gender differences arise when respondents are asked if disease has affected them personally, or those they love. Remarkably, 40% of men, as opposed to only 25% of women, say neither they nor any one in their extended families or among their close friends suffer from any of a long list of diseases and disabilities. Even controlling for age of respondents, underlying lack of personal experience helps explain other findings in a recent public opinion poll of the U.S. adult population commissioned by Research!America, a nonprofit advocacy and public education alliance dedicated to making research to improve health a higher national priority.

Female respondents, significantly more than male respondents, say health issues and health care costs are highest among the concerns facing this country. (more…)

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Disrupting Healthcare Through Science

Patrice Milos

During these last days of summer, we here at Disruptive Women are reflecting on posts from when we first launched—it’s fascinating to see how far we’ve come and where we still have to go—to push—to Disrupt. After all, a woman’s work is never done. We originally published this post on September 25, 2008.

Shortly after the passage of the Genetic Information Nondiscrimination Act, in the 110th Congress, a reporter asked me why I thought the bill was so important. I pondered the question briefly and replied, perhaps in a way she was not expecting, that I felt we now were poised with an informed congress who better understands the potential importance of an individual’s genome information.

To take that thought one step further, I believe this landmark legislation and the thirteen years which led up to its passage have provided our country and our citizens with a renewed energy to guide our congress once again to build the next story – providing our citizens with the potential for better and more personalized healthcare.

Earlier this month, we once again saw the topic of genomics and medicine brought to the halls of the 111th Congress with Representative Kennedy’s introduction of the Genomics and Personalized Medicine Act of 2008 (H.R.6498). The bill originally proposed by Senator Obama in the 110th Congress once again brings new hope for patients and signals that scientific innovation is important in our country.

As a scientist who is passionate about the ability to use the knowledge of the genome to improve human health through better disease diagnosis and treatment, this legislation let the debate begin.

I am anxious to see once again how science and technology can disrupt the future of “health care as usual.”

I look forward to sharing our progress in this field of personalized medicine and sharing my experiences in both the pharmaceutical industry during my time at Pfizer and in my new role as the CSO at Helicos, an innovative single molecule DNA sequencing company poised to play a key role in our path to the future.

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Preserving a Diverse Health Workforce

Elena Rios

During these last days of summer, we here at Disruptive Women are reflecting on posts from when we first launched—it’s fascinating to see how far we’ve come and where we still have to go—to push—to Disrupt.  After all, a woman’s work is never done. We originally published this post on September 25, 2008.

As a leader from the Hispanic community with supportive parents and counselors and with a stellar academic background, I was fortunate to have the opportunity to participate in the Federal Health Careers Opportunity Program (PHS Title VII) – not only to be a program coordinator for a local CBO (East LA Health Task Force, 1980), but as a pre-med student from Stanford University who had not completed the pre-med curriculum upon graduation, I was appointed to an HCOP post-bac program (Creighton University, 1981) and was accepted into UCLA Medical School in 1982 where I served as a counselor for minority premed students for the State of California HCOP program. I know several Latino physicians and public health professionals who benefited from this program and wouldn’t be where they are if it hadn’t been for this program. HCOP has been the major recruitment program for disadvantaged students to enter medicine and public health careers – until the Federal government decided to decimate it in 2006. Now with the current physician and public health workforce shortage along with the tremendous growth in the diversity of the U.S. population, this program should be brought back to its 2005 funding level. In addition, I believe there should be a regional approach to workforce planning and implementation, so that programs in regions with large Hispanic populations target their efforts to bring Hispanic students into the region’s medical and public health schools. The next President needs to understand the importance of having a diverse health care workforce – the literature has shown that Hispanic and African American physicians and dentists generally care for more minority, Medicaid and uninsured patients – the most vulnerable patients in our society, and those who, without health care, tend to be the sickest with the greatest health care costs to the nation.

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Expanding Choice Through Change

Michelle McMurry

During these last days of summer, we here at Disruptive Women are reflecting on posts from when we first launched—it’s fascinating to see how far we’ve come and where we still have to go—to push—to Disrupt. After all, a woman’s work is never done. We originally published this post on September 25, 2008.

Remember Harry and Louise? Sitting at their kitchen table, the nondescript couple burst onto the national stage in a 1993 television commercial that deftly attacked Bill Clinton’s proposed health care plan and made even those of us committed to universal health insurance afraid of its consequences.

I can’t recall the lines Harry and Louise used, but 15 years later I remember the message: America is built on choice, health reform will take away that choice, and if we pursue the proposed reforms we’ll deeply regret it. Then a medical student, I was convinced (albeit naively) that we should have a healthcare system like those of our European counterparts. I was seeing many, many patients who had waited too long to visit the emergency room because they didn’t have insurance – and the accompanying detritus of medical neglect. But I was moved by Harry and Louise. I am not a person who is easily swayed, and yet their message made sense to me. It put a chink in the ideological armor of the left that persists even now.

Today, as we think about how to pursue smart and sustainable healthcare reform, we would do well to remember that Americans – myself included – like to get something in return for their money. And we like to have meaningful choices. As we try to make the system better, let’s not sacrifice choice. In fact, expanding choice is actually the best rationale for reform. We like to think they have choice in our current system, but there are a myriad of choices that are made for us before we even walk into the doctor’s office or taken away from us after a decision is made. (more…)

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Defining the next revolution for women, work and family

Madeleine Kunin

During these last days of the summer, we here at Disruptive Women are reflecting on posts near when we first launched—it’s fascinating to see how far we’ve come and where we still have to goto pushto Disrupt.  After all, a woman’s work is never done. We originally published this post on June 19, 2012.

The New Feminist Agenda, defining the next revolution for women, work and familyby Madeleine Kunin. Trying to “do it all” takes a toll on women’s health. And men’s health too.  Surprisingly, more men than women report feeling work life stress.

It’s time to take a serious look at how we expect families to combine work and family without jeopardizing their health  in today’s predominantly two-wage earner family.  In my book, “The New Feminist Agenda, defining the next revolution for women, work and family,” published on Mother’s Day (reviewed the same day in  The New York Times Book Review on the front cover)  I lay out an agenda that would enable working families to be both  healthier providers and caregivers.

I was on a radio talk show Monday morning, emanating from Miami, Florida, and one of the callers explained that she has a job, recently had her second child, her husband is helpful, but all she feels in guilt. She would like to spend more time with her children, but she can’t because she is working.  “Does anyone else feel this way?” she asked.

I assured her that as a mother of four children who had a political career, I knew exactly what she was talking about.

When I wrote my first book, Living a Political life, my editor at Knopf told me, “You’ve got to cut out some of the guilt in the manuscript. “ I cut some of it out of the book, but I haven’t cut it completely out of my life.

(more…)

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Women as Agents of Change in Global Development

Julie PotyrajIn her second article of The “Women As Agents of Change” series, Julie Potyraj looks into how women across the world are working to reduce maternal mortality.

Even though many global health initiatives focus on issues related to women’s health, and though women make up the majority people working in the field, global health is predominantly led by men. Many global health funding agencies have a noticeable lack of female leadership throughout their histories. But can male-led organizations lead to the type of improvements in women’s health that the world so desperately needs?

Studies have shown that women in leadership positions in governmental organizations are more likely than their male counterparts to implement policies that are supportive of women and children. In 2003, women won nearly 50 percent of the lower house of parliament seats in Rwanda. Though they faced obstacles, these women started a dialogue about the importance of women’s empowerment, initiated pro-child legislation, and prioritized the needs of women and children in the budget. We’re also starting to see that increasing women’s leadership in global health is directly connected with improvements in health outcomes for women and children. In India, for example, there was a 1.5 percent reduction in neonatal mortality rates for every one standard deviation increase in women’s political representation at the district council level. Essentially, as the number of women in government increased, the rates of neonatal mortality decreased. (more…)

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