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Family Caregivers Need Support; Are States Meeting the Need?

One day my toddler decided that she was going to push “Gamma” in the wheelchair. She went to the tippy-top of her toes, reached her hands high to grab the handles and then p-u-u-s-s-h-e-d. It clearly wasn’t going to happen without some assistance, but she didn’t see it that way. After several frustrating attempts she looked up at me and said, “Help, Mama, help…”

Choula PhotoI am one of 42 million Americans who care for an older adult. I also work full time and have a family. My mom’s early-onset dementia, compounded by multiple chronic conditions, has sent me into a tailspin in the five years since her diagnosis.

Initially, I was in a state of crisis: financially, emotionally and mentally. During this time I became a first-time mom and now have another baby on the way. It took me a while to admit that I couldn’t manage on my own, that I needed help. I discovered that having a functioning, reliable system in place to support me (the daughter and caregiver) as well as my mom was essential to my well-being and ultimately her care.

A report from the AARP Public Policy Institute, the 2014 Long-Term Services and Supports Scorecard, rates states on how well they deliver services and supports to older adults and their family caregivers. Specific caregiver support indicators include:





My baby girl is still too small to push “Gamma” in her wheelchair without help. However, now she knows where to go for support to make that effort possible.

But many families don’t.

We need to spread the word about how family caregivers can get help, as well as make more supports available.

The LTSS Scorecard shows family caregivers how their state ranks in providing needed support. At the risk of adding one more thing to their already long “to-do” lists, I hope that family caregivers will use this information to educate policymakers, share their personal stories and demand improvements.


Photo: Rita Choula


Rita ChoulaRita Choula is a project administrator with the AARP Public Policy Institute’s Office of Strategic Initiatives. She manages a caregiver initiative, funded by major foundations, that seeks to provide nurses and social workers with tools to better support family caregivers across settings. She focuses on the areas of assessing the needs of diverse family caregivers and the development and implementation of caregiver assessment, support and services at federal, state and local levels.