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Caregivers—the other side of Alzheimer’s

Impact of disease felt by families, communities, nation

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December 21st, 2010

The devastating impact Alzheimer s disease (AD) has on patients is well known and well documented. But a number of recent studies shed new light on the other side of Alzheimer s the toll it takes on the nearly 11 million Americans providing unpaid care for a loved one with the disease. Together, these studies illustrate the unique challenges of caring for Alzheimer s patients. A survey sponsored by the Alzheimer s Foundation of America and pharmaceutical companies Eisai and Pfizer showed that 55% of AD caregivers said caring for their loved one has taken a toll on their own heath, and 60% of AD caregivers said they feel overwhelmed. The same study found that the majority of caregivers are proactive participants in discussions and decision-making concerning the disease. Caregivers greatest concerns about the progression of their loved one s disease were memory loss, personal safety, and confusion. Alzheimer s caregivers are typically the first to notice when their loved one s symptoms are becoming worse and whether the disease may be progressing to the next stage, which is why caregivers are essential partners in disease management discussions, says Barry W. Rovner, M.D., director of geriatric psychiatry at Thomas Jefferson University in Philadelphia.

Women and Alzheimer s

The findings of another recent study,The Shriver Report: A Woman s Nation Takes on Alzheimer s, released by award-winning journalist Maria Shriver and the Alzheimer s Association, shows that women comprise 60% of Alzheimer s caregivers. Women also account for almost two-thirds of Alzheimer s patients, bringing the total number of women impacted by Alzheimer s to ten million. The Shriver Reportcalculated that the economic impact of AD totals about $300 billion per year with the cost of caring for a single patient coming in at $56,800 per year. And as the baby boom generation ages, the number of people diagnosed with AD is expected to triple by the year 2050. Grounded in solid facts and statistics,The Shriver Reportis much more than a scholarly study on the state of AD. It is really a multi-faceted anthology with firsthand accounts and personal essays from contributors such as former First Lady Laura Bush, Barbara Streisand, Vice President Joe Biden, and others. When my father, Sargent Shriver, was diagnosed back in 2003, my mother, four brothers, and I all felt we were entering a world that was confusing, dark, and depressing, says Maria Shriver. People just didn t talk about Alzheimer s when it hit their families. It was a diagnosis shrouded in shame and there was little information and even less hope. It s time to start talking about Alzheimer s. It s time to fight this disease.

Comfort in understanding

Another study conducted byCaring.comfound that 49% of caregivers say that caring for an AD patient is their single biggest source of stress ahead of the economy and their own health. Caring for someone with dementia can be such a difficult and lonely experience, says Andy Cohen, cofounder and CEO of Caring.com, an interactive website that helps caregivers. We ve created tools to help caregivers reduce stress and find comfort in understanding what they re experiencing. Steps & Stages is about what they are experiencing today, along with guidance about what to expect next. After completing a brief assessment questionnaire on the website, caregivers receive a custom care guide with tips and advice for their loved one s particular stage of the disease. The website was developed by geriatric care experts from across the country. We ve crafted content that will help family caregivers get practical, stage-specific advice about how to take care of a family member with Alzheimer s, says cofounder Jim Scott. This is the first of its kind for the senior and caregiving community, a community that grows as the U.S. population ages. Martha Huggart of Rayond, Miss., is one of the 11 million people caring for someone with Alzheimer s. It can be hard to find information specific to my mom s situation, says Huggart. Caring.comprovides the help and support I need to cope with what s happening now and with what s coming next.

Alzheimer s caregiver resources

  • The Alzheimer s Association has a 24/7 helpline number: 1-800-272-3900 (www.alz.org).
  • Alzheimer s Foundation America has a hotline that operates from 9 a.m. to 5 p.m. (EST), Monday Friday: 1-866-232-8484 (www.alzfnd.org).
  • www.caring.com offers interactive phase-specific information for Alzheimer s caregivers.
  • The Shriver Report: A Woman s Nation Takes on Alzheimer s is currently only available as an eBook for digital readers which can be purchased at Amazon.com or wherever Simon & Shuster eBooks are sold. There are plans to release the report in paperback form later this year. For more information go to www.shriverreport.com.

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