Caregiver Facts and Figures: A Bittersweet Reality

Almost eight years at the Alzheimer’s Association – five at the Utah Chapter and close to three at the National Office right here in Chicago – left equally enduring imprints on my mind and heart. The mental imprint is analytical, bridging science and people in the shape of a fervent belief that a cure is inevitable.

The imprint on my heart is much different. It’s in the form of my own grandmother, who died of complications from Alzheimer’s disease and vascular dementia at the age of eighty-nine. It’s a delicate imprint, and it still hurts sometimes, even though she died over twenty years ago. I see her face in almost every person I meet who has the disease.

It is because of these imprints that I took great interest in the Alzheimer’s Association’s recent release of its 2012 Facts and Figures Report. This compendium of facts is impressive and startling. For a very cool visual summary of the toll that Alzheimer’s disease takes on individuals, caregivers, families, and the health care system, check out this 2-minute video marking the report’s release:

It gave Dr. Chill the chills…and some tears. According to the report, there are over fifteen million caregivers in the United States caring for someone with Alzheimer’s or a related dementia. In 2011, they provided over seventeen billion hours of care valued at over $210 billion.

But here’s the thing that really disturbs me. Caregivers don’t only care for people with Alzheimer’s disease and other dementias. There are caregivers for people with cancer, diabetes, heart disease, lung disease, and those who had a stroke among other health complications. Some of you reading this blog may be caring for someone with a developmental or physical disability. Others might be taking care of someone who is simply having trouble maintaining independence due to the normal course of aging.

The numbers in the Alzheimer’s Association’s report are stunning, but they paint just one swath of the caregiver landscape. I started to wonder how much of the landscape remained. Some digging turned up a 2009 report -- the most recent I could find that provides general numbers --  compiled by the National Alliance for Caregiving and AARP. Caregiving in the US states there are 65.7 million caregivers in the United States caring for someone who is aged, disabled, and/or ill. Now that’s really stunning.

Remember that mental imprint I described? The analytical, more objective one. When I hear these kinds of numbers, my mind turns toward concepts of magnitude, awareness, research, the badly mired health care system, graphs, charts, grant proposals, and yes, cool videos that send shivers down my spine. In other words, I see the big picture.

But if you recall that other, more subjective imprint inside me – the one on my heart – I see a different vision. Try to imagine these massive numbers melting together into an indecipherable glob of hurt. What I see is one caregiver, one that represents the hundreds I’ve known over the years. She is tired, distraught, scared, and doesn’t know where to turn for help. She feels incredibly alone.

Yet she is not alone. As we’ve learned, she is literally in the company of millions.

It’s a bittersweet reality.

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    A very good article. And the caregiver is not alone, she has a friend in you and like you. As a caregiver, the pain of the patient overwhelms you and its like a deer caught in headlights. The caregiver is so stunned that other than to address the task at hand of the patient, they dont know what else to do. And as time moves forward, the caregiving just becomes part of the routine. Little realizing, the caregiver's own individual needs with little or no guidance. It is easy to say just ask for help. Live in a caregiver's role and one will realize that thinking about oneself is a luxury that most caregivers do not have. The obvious is a mirage.

  • In reply to Caregiver Survivor:

    Caregiver Survivor,

    Thank you so much for your comment; you describe so eloquently the internal experience of caregiving. Your point about asking for help -- both the importance of it and the general misperception that it is easy for a caregiver to do so -- was right on target. I look forward to discussing this issue in future posts.

    Thank you again,
    Dr. Chill

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