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Compassion: Advocating for Caregivers Mandatory

New research in Alzheimer's is promising.
(This story is by Margie Culberton, an AARP Mississippi volunteer and freelance writer. Her photo is at the left.)

“Thus, caregivers remain largely forgotten by the political system. It is a shame. But it is true,” is the last line in an article in a Forbes article called “Occupy Elder Care: Why Caregivers are Bad Advocates.”  

Family caregivers have an especially daunting task. They often feel exhausted and yet also guilty they’re not doing enough. The current and growing shortage of qualified professionals is one reason why four in five seniors must turn to family members. (See a previous AARP Mississippi article about the impending caregiver shortage.)

Gail Sheehy’s book, Passages in Caregiving, speaks of her experience of caring for her husband for the final 17 years of his life. She says the confusion family caregivers experience is like wandering through a labyrinth—taking even a circular route, complete with blind turns, and often ending up nowhere.

Caregivers outside of the family have the same problems that family caregivers have and more. According to the Bureau of Labor Statistics, home-health aides typically make $10.49 an hour, nursing assistants earn $12.32, and personal-care aides are paid about $10. Also rarely do caregivers have any benefits, including health care. Because of these factors, those who would otherwise enjoy the field of senior caregiving as a potential profession see no way they can realistically follow this path. Therefore, they are turning away in scores from a system which desperately needs them.

Many organizations have tried to solve these problems. The American Psychology Association's 2011 resolution touts the “critical role that family caregivers play in our society.” Further, the APA has goals which “seek to inform and advocate for psychological research, interventions, services, and supports that promote optimal health, well-being, and quality of life for family caregivers and their care recipients.”

During the 2014 Mississippi legislative session, AARP Mississippi asked lawmakers to create a caregiving task force to examine the needs of the state’s caregivers. As a result, the Mississippi House passed a caregiving resolution. And AARP has been working closely with the national Commission on Long-Term Care.

The Assisted Living Federation of America ( ALFA) educates and advocates federal and state policymakers about assisted living and caregiver issues. The Eldercare Workforce Alliance ( EWA) speaks of policy and advocacy efforts to bring high-quality, well-coordinated care for older adults. ”  Finally, among many other organizations working on these issues, the Institute of Medicine's report concluded that our country needs to have: 1.) better training for caregivers, 2.) new models of health care delivery and 3.) better systems for payment.

How is Mississippi doing in its caregiving policies? In the 2011 Long-Term Services and Supports (LTSS) for Older Adults State Scorecard, Mississippi ranks last among states across all dimensions.

A good caregiver is a crucial member of a health care team. Without that vital caregiver present, elders who need them wouldn’t receive proper care. Caregivers are often the one person who knows everything going on with the senior needing care. Isn’t it time we truly demonstrate that we value their importance?

(Next month’s column will be the last in our five-part series on caregivers: "Self-Care for Caregivers."  To contact Margie, email her at

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