The Invisible Victims of Alzheimer’s Disease: Family Caregivers

July 25, 2013 - MaryAnne Sterling

Editor's note: This piece originally appeared in the July 2013 edition of the LEAD Coalition newsletter, which you can read online here

To a few close family and friends who know me as a longtime caregiver and advocate for my aging parents and (more recently) my in-laws, I have done the impossible: survived 17 years of struggling to support the needs of three-out-of-four parents who have either died from, or currently struggle with, some form of dementia. To the rest of the world, I am invisible.

At 46 years old, I am a small business owner, I have a college degree and a wonderful husband. By all accounts, in the prime of my life! But dementia is progressively taking everything I have. Here are a few examples:

Earnings potential. I gave up an advanced degree to take on the responsibility of supporting my parents. At the time, Dad had dementia and my parents were running out of money. As an only child and a daughter, I was duty-bound to help. But I often wonder what I could have accomplished had family caregiving not diverted me from becoming a medical researcher. People need to know.

Financial burden. I lost Dad to dementia in 2001. After the Medicaid spend down required to pay for his nursing home care, my husband and I had to support Mom financially so she could eat, so she had a roof over her head. We have continued to support Mom for the past 12 years. My husband and I have parted with roughly a quarter of a million dollars thus far. The resource depletion of a “surviving spouse” of someone with Alzheimer’s is another invisible consequence of the disease. People need to know.

Health challenges. I struggle with stress-related health issues that are cumulative and permanent. I was relieved to see the recent piece in the New York Times that relates the effects of caregiving to Post-Traumatic Stress Disorder (PTSD). Relieved, because people need to know.

Family caregivers are the invisible victims of Alzheimer’s disease.

In addition, family caregivers are the most underutilized resource in the healthcare system, even though we are on the front lines of dementia. We are care coordinators, medical record keepers, medical decision makers, insurance navigators, and medication administrators, just to name a few of our numerous roles. But in the eyes of too many in the healthcare system, we are often discounted as “pushy” family members. We are forced to deal with separate silos for healthcare, social services, and community supports (such as transportation and respite care). We are subjected to poor communication, near total absence of collaboration, and the use of complex medical and insurance jargon that nobody is willing to translate into “normal-human-speak.” We often encounter roadblocks when we try to gather medical information and test results on behalf of our loved ones.

Although the National Plan to Address Alzheimer’s Disease includes provisions to improve support for family caregivers, this is a much larger task that demands unprecedented culture change. And there is a role for everyone!

  • Providers: include the family caregiver in the conversation. Listen to us. Educate us. Ensure that we are treated as key members of the care team. Think how welcoming us as partners could help reduce hospital readmission rates and improve patient outcomes.
  • Healthcare community: help change attitudes. Make it everyone’s responsibility to assist the family caregiver in coordinating both healthcare and support services for our loved ones with dementia.
  • Policy makers: break down care coordination silos. We must align community supports and social services with healthcare. Great concepts like the Aging and Disability Resource Center Program have yet to make enough impact at the local level. In addition, we must find new ways to assist family caregivers financially. Reauthorize the Older Americans Act (S. 1028) and pass the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 709/H.R. 1507)
  • Employers: develop a proactive plan to assist employees who are struggling with caregiving responsibilities. Ensure that your employees have a safe environment in which to discuss their caregiving challenges. Collaborate with the community around you to find solutions.
  • Community leaders and faith-based organizations: reach out to family caregivers in your community. Develop a plan and processes to assist family caregivers in finding the resources we need but may not know are available to us.

For those of you wondering what the future of dementia looks like in our country if our family caregivers continue to be invisible victims, you need look no further than my house.

People need to know.

MaryAnne Sterling is the Co-founder of Connected Health Resources, spearheading innovative new projects to help patients and family caregivers better understand their health needs and navigate community health resources. She is also the CEO of Sterling Health IT Consulting. MaryAnne has been a thought leader in health information technology and health policy for over a decade. She serves on several healthcare advisory panels, a Federal Advisory Committee, and recently served as Executive in Residence for the HIMSS Foundation, Institute for e-Health Policy. MaryAnne also serves as Alzheimer’s Association Congressional Ambassador for the implementation of the National Alzheimer’s Project Act (NAPA). She is a renowned speaker and educator on the impact of Alzheimer’s disease on family caregivers.

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