“It’s a national disgrace that so many families dump their elderly parents in nursing homes and assisted living facilities. We need to become a nation of family caregivers. Sons and daughters should invite their aging and aged mothers and dads to live with them,” says trends analyst and forecaster, and family caregiver, Stephen L. Goldstein, Ph.D.

“Yes, you can!” Goldstein reassures families in his memoir/how-to, When My Mother No Longer Knew My Name: a son’s “course” in “rational” caregiving. It could be titled “the joy of caregiving!” It’s the first book families need to read, the caregiver’s “one-minute manager.” Each brief, compelling chapter turns what a son learned on-the-job into immediate help for others. Step-by-step, Goldstein traces how his caregiving role evolved from nominal to 24/7.

“I would never let my mother live in a nursing home,” he says adamantly. “Diplomatically, I had to convince her to move in with me when she was strong and healthy. Eventually, I learned how to deal with her dementia—finding a sandwich in the clothes dryer, changing her diaper (rarely, thank God!), keeping her from choking to death. Finally, I had to discover how to care for myself after she died.

“I wrote the book I never found before and while I was my mother’s caregiver,” Goldstein says. “There’s no theory. Strategically placed throughout the book are 75 practical tips that turn my experience into advice others can use. My narratives make caregiving real. My tips make it manageable—even joyful.” There’s a “Self-Assessment” so current and potential caregivers can benchmark and increase their ability to manage the often lonely, challenging, unpredictable, and overwhelming roles they may assume.

When My Mother No Longer Knew My Name is a one-man support group, written like a friend who’s “been-there-done-that,” talking anecdotally, but authoritatively, to a friend who needs help. It’s raw and gritty, funny and inspiring. It makes people weep, but also gives them hope they can overcome a mountain of seemingly insurmountable challenges, for which they likely feel devastatingly unprepared.

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The Pharmaceutical Research and Manufacturers of America (PhRMA) President and CEO John J. Castellani responded to new efforts unveiled today by the Administration to combat Alzheimer’s Disease:

“Alzheimer’s disease is one of America’s top health challenges. It ravages the minds of patients, seriously impacts entire families and currently costs the U.S. health care system $172 billion a year. According to the Alzheimer’s Association, an American will develop the disease every 33 seconds in 2050, costing the U.S. health care system $1.1 trillion. These costs are simply unsustainable,” said John J. Castellani, President and CEO, PhRMA.

“The outlook could change course, however, if a treatment were discovered that helps delay the onset of Alzheimer’s. Biopharmaceutical research companies, recognizing the great health and economic need to help delay or prevent the onset of Alzheimer’s, have invested heavily in this area and are currently researching and developing nearly 100 medicines to help address this public health priority.”

“Discovering an Alzheimer’s treatment is by no means an easy task; and it can certainly benefit from collaborations between industry, academia and federal research institutions. In addition to their individual efforts to discover and develop novel treatments for Alzheimer’s, biopharmaceutical companies have partnered with each other and with academic and federal research institutions to help move forward the scientific understanding of this complex disease,” said Castellani.

“One remarkable example is provided by the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a large five year research project to define the rate of progress of Alzheimer’s disease, develop improved methods for clinical trials in this area, and to provide a large database which may improve development of innovative treatments.”

“We look forward to continuing our engagement with the different stakeholders and constituents involved in this national charge to combat Alzheimer’s,” said Castellani.

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Six national aging groups filed a friend of the court brief with the Supreme Court last Friday, January 27, saying that there are extensive provisions in the Patient Protection and Affordable Care Act that are of “vital importance to the health and well-being of people 65 and older” and that Congress did not intend for any of them to be contingent on whether or not the minimum coverage provision (also called the individual mandate) was constitutional.

“The health and quality of life of many older Americans are already improving because of the health reform law,” says National Senior Citizens Law Center Executive Director, Paul Nathanson. “We don’t believe Congress intended to let the elderly poor languish in nursing homes or be subject to abuse if the individual mandate was found unworkable.”

The amicus brief was filed in the National Federation of Independent Business et al v Kathleen Sebelius et al and the State of Florida et al v Department of Health and Human Services et al cases which challenge the constitutionality of the health reform law. In those cases, the petitioners contend that all of the ACA should fall if the minimum coverage provision is invalidated by the Court.

The brief states that a “careful review” of policies Congress sought to enact shows that the provisions affecting people aged 65 and over “can be effectuated without any reliance on the minimum coverage provision.”

The brief also highlights the parts of the ACA that greatly benefit people aged 65 and older that should not be affected if the Court decides to invalidate the minimum coverage provision, including the following:

• Reduced cost-sharing for Medicare beneficiaries for prescription drugs by substantially reducing the coverage gap or so-called donut hole
• Elimination of cost-sharing for annual wellness visits and other screening services
• Medicare Advantage plans are prevented from charging higher cost-sharing for chemotherapy and dialysis than permitted under traditional Medicare
• Decreased unnecessary institutionalization of Medicaid beneficiaries
• Improved coordination of care for people receiving both Medicare and Medicaid (dual eligibles)
• Improved quality and safety in nursing homes, and prevention of abuse and neglect of elderly and people with disabilities in nursing and other residential facilities.

The brief states that the only provisions that should be affected by the constitutionality of the minimum coverage provision are the pre-existing condition, the community rating, and guaranteed issue provisions.

“The rest of the ACA, including, but in no way limited to the provisions highlighted in this amicus brief, should remain intact,” the brief concludes.

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