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In a Portland Tribune (Ore.) article about predictive tests for neurodegenerative diseases, Jason Karlawish, MD, professor of Geriatrics and Medical Ethics and Health Policy, says most physicians don’t want to be bothered with predictive tests. Karlawish directs the Neurodegenerative Disease Ethics and Policy Program at the Penn Memory Center. Karlawish says even the most predictive tests such as a genetic test for Huntington’s are inexact. They don’t tell those who test positive when they will get the disease. One study of people learning they tested positive for a gene associated with Alzheimer’s, according to Karlawish, did not show significant numbers of them lapsing into long-term depression or becoming markedly anxious.

You can read the article here.

The University of Pennsylvania Institute on Aging (IOA) and Alzheimer’s Disease Core Center (ADCC) awarded two one-year pilot grants focusing on Alzheimer’s disease (AD) and related neurodegenerative disorders.

“Does Chronic Insomnia Lead to Accumulation of Beta Amyloid?” Philip Gehrman, PhD’s pilot study, will measure beta amyloid and other metabolites in five individuals with chronic insomnia and compare them to five good sleepers. Dr. Gehrman, Assistant Professor in the Department of Psychiatry at the Perelman School of Medicine, University of Pennsylvania, says that the results of the study may help investigators understand how chronic poor sleep may increase the risk for dementia, and inform the development of interventions designed to reduce the likelihood of dementia.

David R. Roalf, PhD, a Research Associate at the the University of Pennsylvania Perelman School of Medicine, Department of Psychiatry, will be focusing on early indicators and detection of cognitive impairments. His pilot study, “Within-individual Variability as a Biomarker of Incipient Dementia in Mild Cognitive Impairment,” will measure neurocognitive variability in individuals with Alzheimer’s disease, Mild Cognitive Impairment and healthy aging to better understand the utility of the fluctuations in neurocognitive ability as an indicator of neurological integrity and its viability as an early indicator of cognitive impairment in MCI.

An Associated Press – NORC Center for Public Affairs Research poll of Americans shows becoming a caregiver to a frail spouse causes more stress than having to care for a parent or an in-law.

While 8 in 10 people who’ve been caregivers called it a positive experience, it’s also incredibly difficult. And while 7 in 10 who cared for a spouse said their relationship grew stronger as a result, nearly two-thirds said it caused stress in their family compared with about half among those who cared for a parent.

You can read more about the poll here.

The Penn Memory Center Choral Group, led by Darina Petrovsky, a Penn Nursing Science PhD student, gave a fantastic performance at The Watermark at Logan Square. Over the course of 4 months, the group rehearsed a selection of Eastern Orthodox Easter music, Russian folk songs and American favorites. The performance closed with a rousing sing-along of America the Beautiful. Click here to see photos.

Caring for a person with Alzheimer’s disease, and keeping them safe,  can be challenging. The National Institutes of Health (NIH)‘s ADEAR center offers a booklet for caregivers with suggestions for creating a safer space for people with Alzheimer’s disease.
Step 1? Think prevention.

You can download the booklet here.

The AARP Bulletin reports on reaction to a potential blood test for Alzheimer’s disease. While some experts heralded the news, others worried that, until effective treatments are available, learning that you’re likely to develop Alzheimer’s could cause more harm than good. There’s already good evidence that simple lifestyle changes can help slow the likelihood of developing dementia, says Jason Karlawish, MD, professor of Medicine and Medical Ethics and Health Policy,  and Associate Director of the Penn Memory Center, who was not involved in developing the test. “A heart-healthy diet, physical activity, and social and cognitive stimulation can help preserve cognitive function,” he says. People who learn that they are at high risk of developing Alzheimer’s may be more motivated to make healthy changes.

Click here to read more.

Taking care of yourself is one of the most important things you can do as a caregiver. Regular physical activity can help you increase your energy levels needed for caregiving activities, prevent chronic diseases, and reduce feelings of depression or stress.
Worried about finding the time to exercise? Make a plan to exercise with the person you care for because people with Alzheimer’s disease can benefit from exercise, too.

Here are some ideas to help get you going:  Exercise and Physical Activity: Alzheimer’s Caregiving Tips.

The April issue of the journal Health Affairs is devoted to “the long reach of Alzheimer’s disease.” The issue examines research, national policy, caregiver support, and end-of-life care in an expansive collection of 28 articles.

A large portion of the journal issue concentrates on supporting people with the disease. “Our role is to make the case for caregivers and patients currently in need,” said Sarah Dine, senior deputy editor of Health Affairs. She hopes the journal will increase awareness about their plight and inspire good policy. “It’s hard to get funding for care managers who are training for the workforce, or support for family caregivers on the ground,” she told Alzforum.org.

One urgent problem is that people caring for Alzheimer’s patients have few options for guidance or help. “The healthcare system largely neglects caregiving,” said Jason Karlawish, Associate Director of the Penn Memory Center.

“Although multiple randomized controlled trials have shown that education, skill training, and support benefit not just the caregiver, but the patient, we don’t provide those interventions as a matter of routine care,” he said. “That simply has to change.”

Read more at Alzforum. org

Jason Karlawish, MD, professor of Medicine, Medical Ethics and Health Policy, speaks with WTOP radio in Washington, D.C. about his Health Affairs paper looking at ways society can prepare for living with Alzheimer’s disease. “If you have a patient with dementia, you invariably have at least one other person who has to take care of that person,” said Karlawish.

“They start to have Alzheimer’s disease…they live the disease, they think about the disease, they make decisions for the patient, so in some sense, the disease is as much their own experience as it is, of course, for the patient. Now is the time to be thinking about living with a brain at risk.”

“Whether as patients or as caregivers, we all have Alzheimer’s disease,” says Karlawish. “The question we must engage with is, How should we live with it?”

You can read more here.  Listen to the interview with Dr. Karlawish on WTOP Radio here.

Jason Karlawish’s review of Margaret Lock’s book, The Alzheimer Conundrum, was recently published in Health Affairs, a journal of health policy thought and research. Dr. Karlawish, Associate Director of the Penn Memory Center, writes that The Alzheimer Conundrum is “an ambitious dissection of a vexing problem: Despite several decades of research, dementia remains a very real and devastating problem, and the causes of the most common form—Alzheimer’s disease—remain elusive.”

“In 2002 Margaret Lock, a medical anthropologist at McGill University in Montreal, Quebec, started work on a book about the social implications of genetic testing for complex diseases. She chose Alzheimer’s disease as her case study,” Dr. Karlaiwsh writes.  “Lock soon discovered that she had stepped into a far more complex and controversial situation than she had anticipated. ‘Among experts,’ she observed, ‘the very category of AD [Alzheimer’s disease] was being subjected to questioning and possibly category fragmentation or reshuffling was in the air, making for a plethora of unknowns.’ Lock set out to explore these unknowns.”

You can read the full book review at Health Affairs.org