WOMEN’S BRAIN HEALTH SERIES: Meet Myriam Marquez: Lawyer, Fierce Advocate Living with Alzheimer’s

Alzheimer's-Banner-Draft-2_1In the next few decades, the number of persons over the age of 65 with Alzheimer’s disease is set to nearly triple from an estimated 5.2 people today to 13.8 million in 2050. It is an expensive disease–total payments for health and long-term care for all individuals with Alzheimer’s disease and other dementias in 2016 are estimated to be $236 billion, of which $46 billion will be out of pocket. These numbers will continue to challenge our country’s resources, health and long-term care systems, and families for years to come. However, as researchers search for a cure, we must also meet the challenge of living well with Alzheimer’s—and we must start by listening to the voices of those living with Alzheimer’s and other dementias.

As September is World Alzheimer’s month, we took some time to speak with Myriam Marquez. Myriam is an advocate who lives with dementia, and currently serves on the Advisory Council for the National Alzheimer’s Project Act. Myriam was quoted in a paper for the Dementia Action Alliance, saying, “Those of us living with dementia are alive. We can feel, we can laugh, we can cry no matter what stage we are in. There are so many things we can continue to do during the course of the condition.” As Myriam notes, people can live well with Alzheimer’s, and it is important to engage persons living with dementia in developing the care support systems that will make this possible. (more…)

WOMEN’S BRAIN HEALTH SERIES: Dementia-Friendly Communities for All of Us—Why We Need Them and What You Can Do

Nora Super, Chief, Programs & Services, n4a

Nora Super, Chief, Programs & Services, n4a

While we all hope for a cure for Alzheimer’s disease soon, the reality is that millions of people need support now—and 60% of people with dementia live at home. The good news is that we can all do our part to meaningfully support people with dementia and their care partners.

This is personal for me.  First, as ED of the 2015 White House Conference on Aging (WHCOA), Dementia Friendly America (DFA) was brought to my attention as a grassroots movement in Minnesota providing tools to make communities more dementia-friendly.  At the WHCOA, DFA committed to expand to 15 communities beyond the 35 communities in Minnesota. Today, just one year later, over 80 communities in 30 states are striving to become dementia friendly.

Alzheimer's-Banner-Draft-2_1Second, as a daughter of someone with dementia, I know firsthand the painful experience of encountering health professionals, restaurant servers and store clerks who have no clue how insensitive and destructive their treatment of people with dementia can be.  DFA gives people the resources to create a dementia-friendly environment across all sectors—from banks to transportation and housing.

That’s why I am proud to co-chair DFA as part of my new role at n4a.   I hope you’ll join us in this essential work to better support people with dementia and their families. (more…)

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…)

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…)

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. 

lathan_headshot

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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