Health AGEnda

New Report Examines Burden of Caregiving on Spouses

Click on image for a PDF of the report.

Click on image for a PDF of the report.

All family caregivers are not alike. A new Insight on the Issues report, Family Caregivers Providing Complex Chronic Care to Their Spouses, shows that the burden of caregiving disproportionately impacts spouses. The report was produced by the AARP Public Policy Institute and the United Hospital Fund  and supported by grant funding from the John A. Hartford Foundation.

Adult children and spouses are the primary caregivers of our nation’s older adults. They provide critically important assistance that helps frail elders remain at home, from meal preparation to such complex medical/nursing tasks as medication management, wound care, and care coordination.

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Expecting Great Beginnings—and Endings

Amy Berman's daughter, Stephanie, with her greatgrandparents, Herb and Julia.

Amy Berman’s daughter, Stephanie, with her greatgrandparents, Herb and Julia.

It tickles me to report that I live with incurable cancer and I am expecting. I am expecting that the cancer will take its toll, that I will need to make choices about my health and care, that I will need the support of my family, and that I will need resources.

Imagine if everyone understood that they are expecting. We should all plan for great beginnings and endings.

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Caring Nurses Teach Caregiver to Speak to the Heart

Elizabeth Parker Garcia, author of "Where the Truth Lies." The story took second prize in this year's John A. Hartford Foundation Heroes of Geriatric Care Story Contest.

Elizabeth Parker Garcia, author of “Where the Truth Lies.” The story took second prize in this year’s John A. Hartford Foundation Heroes of Geriatric Care Story Contest.

In the second installment of our look at the prize-winning stories from the John A. Hartford Foundation’s Heroes of Geriatric Care Story Contest, we are pleased to present Elizabeth Parker Garcia’s “Where the Truth Lies.”

Her story, which took second prize in the contest in May, offers an example of geriatric care that recognizes the family’s role in caregiving. She tells a deeply personal and heartbreaking story about her father with advanced-stage Alzheimer’s disease.

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Health Is Difficult When Solo: Will More e-Caregivers Help?

TS_CaregiverIn today’s cross-post from the Prepared Patient blog, we are pleased to present a thought-provoking article by Jessie Gruman, an author, advocate, and founder of the Center for Advancing Health. Ms. Gruman has been diagnosed with five life-threatening illnesses and writes about the need for patient engagement in health care. In this post, she conveys the challenges of caregiving and the potential benefits and pitfalls of using technology to help.

Given our interest in both technology that supports better care for older adults and family caregiving issues—including supporting an Institute of Medicine  effort to produce a comprehensive study on the topic—we are pleased to present Ms. Gruman’s piece, “Health Is Difficult When Solo: Will More e-Caregivers Help?”  We hope you will comment and share your experiences, as well as tips for what you’ve found helpful.—Marcus Escobedo, program officer, the John A. Hartford Foundation

Last week, both my husband and I came away from a conversation with my doctor positive that we understood my new weight-gain plan. Funny thing: Each of us recalled a different plan. I am always struck by how our memories of the words spoken by my doctor can be so dissimilar. No, not all of them, but enough of them to be wary of going to any appointment without a backup listener.

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Roberto’s Story: Giving Voice to Family Caregivers

In this final installment of our 2011 Annual Report series, we are pleased to share the voice of those who are too often overlooked—the family caregiver. This video features Mignonne, daughter of 82-year-old Roberto; she speaks candidly about her father’s delirium and the impact it had on both of their lives.

Delirium is a sudden, fluctuating, and usually reversible state of mental confusion that affects up to 50 percent of hospitalized older adults. People with delirium may present as disoriented and have memory problems. As a result, they are often misdiagnosed with dementia, depression, or psychosis.

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Our Caregiver Reality Check

View a PDF of the full report.

Who cares for our ill, our aged, our vulnerable? Is it physicians, nurses, social workers, aides? Or is it perhaps another member of the health care team? The largest portion of health care is delivered by families.

Whether it is taking mom to the doctor, preparing meals, or picking up prescriptions, the 42 million family caregivers in the United States provided care valued at $450 billion in 2009, more than our total annual Medicare expenditure in that same year. They provide a lot of care. They keep our frail and complex elders at home.

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When Health Care Becomes Personal

Kim Peters, right, and her grandmother

Making the transition from the “for profit” world to the not-for-profit John A. Hartford Foundation has been an eye-opening experience. After a decade of pitching medications and strategizing over the benefits and deficiencies of a product, I realized that the overall well being of a person involves much more than getting a doctor to prescribe the best drug on the market.

Having spent my entire career in advertising, focusing on how certain medications provide solutions to specific health problems, I believed our health care system was working somewhat cohesively. I certainly was not naïve enough to think it worked flawlessly, but I also was not aware of just how badly it was performing.

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The Essential (Before I Kick the) Bucket List

Those of you who have read my previous blogs know that I was diagnosed with Stage IV inflammatory breast cancer in October 2010. You also know that I chose to forego aggressive treatment in favor of palliative care.

Thankfully, my health status has changed little since my last update. I have occasional pain in my right breast, where my cancer began, and a little pain in my lower back, where the cancer has spread. I go to bed a little earlier. Otherwise, I feel like the same person.

Because—thankfully—I’ve been feeling so good, I have been putting off writing a blog that seems to be all the rage with other writers discussing terminal illness: the (before I kick the) bucket list. I have given this some thought over the past two years. For about five minutes I considered a few options: a trip to Antarctica (way too expensive to justify); volunteering in Africa (not a great choice for an immunosuppressed person like me); climbing the Great Wall (done that three times!). Then I realized that it’s not about taking a trip or doing something thrill-seeking and new. I am already doing the things that matter most to me:; making family dinners, talking with my grown children, visiting with dear friends.

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Listening to My Mother

"Don't forget I'm here."

I can’t deny it—I miss the mother I once had. Even at age 80, she was vibrant, loving, and independent. And she was strong. For nearly 20 years she provided care to my father, who before his death struggled with normal-pressure hydrocephalus and macular degeneration. What an incredible woman!

Unfortunately, time and illness are no respecters of persons. The past 12 years have not been kind to my mother. At 92, she has become frail and suffers with advanced dementia. Each challenging new decline—losing her memory; needing help to shop, bathe, and manage money; and now requiring assistance just to dress and eat—has left her feeling diminished, depressed, fearful, and incompetent. Recently, the appearance of other typical Alzheimer’s symptoms—changes in personality, behavior, sleep patterns, and in recent months, a growing disorientation to places and people—have deepened her feelings of inadequacy and frustration. It’s heartbreaking.

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SCAN, Health Affairs, and Long-Term Care: The Sequel

hacvrnewIn addition to the good news of Health Affairs focusing on long-term care coupled with the additional bad news on hospital readmissions from skilled nursing facilities, as I reported a few weeks ago, this special issue of Health Affairs had many other features of interest.  A non-exhaustive list includes:

Susan Reinhard, senior vice president of AARP’s Public Policy Institute and leader of a project to enhance nurse and social worker training in support of family caregivers, had a paper discussing promising strategies to help older adults move from nursing homes to less restrictive care—or avoid nursing homes altogether. Although effective, these initiatives are underutilized.

Diane Meier, leader of the Center to Advance Palliative Care at Mt. Sinai in New York, wrote a commentary on the need to implement palliative care in nursing homes.  With her co-authors, she argues that essentially anyone in institutional long-term care is at the point where they would benefit from the application of the person-centered principles that are core to palliative care.

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