Who cares for the caregivers who need crucial respite?

PROVO — She won't remember it the next day but sometimes, petite and well-dressed 85-year-old Loretta Yates dances.

When she was young, her family held dances in their large Kansas farmhouse every Saturday. Though her surroundings now are those of a senior activity center in Provo, her dancing is much the same.

"She's a good dancer, she still has rhythm," said her daughter Marilyn Schwartz. "We were dancing one night and she was doing great. She asked me, 'Am I showing off too much?' It was really cute of her."

As the primary caregiver of her mother, Schwartz is one of 42.1 million people in the U.S. who provided care at some time during 2009 to a family member 18-years or older, according to a recent report by the AARP. They estimate that the economic value of such work amounts to $450 billion a year, or more than total Medicaid spending in 2009, including both federal and state contributions.

On Tuesday nights, Schwartz takes Yates to the senior center to dance while Schwartz attends a support group for caregivers – just one of the many services Yates uses to assist with her mother. More groups like this are forming and are gaining popularity, though it's hard to persuade people to attend, ask for outside assistance, or accept it once it is given.

Bonnie Shepherd, a Frontotemporal Dementia caregiver support group leader, cared for her late husband for nearly five years, after his diagnosis of FTD four-and-a-half years ago. FTD is a neurodegenerative brain disease affecting frontotemporal portions of the brain, areas associated with behavior, personality and language. While an FTD patient's memory stays intact, their behavioral filters slowly diminish, leaving them prone to outbursts and other behavioral issues.

Along with other community members in the same situation, Shepherd began holding a support group once a month with the intention of educating group members as caregivers of FTD patients, educating the community about FTD, and supporting group members.

"It's very, very important that when people are going through some kind of a crisis in their lives that they connect with other people so that they don't feel like they're alone, doing it by themselves, and so that they have resources," Shepherd said.

These resources include services like caregiver education or training, disability transportation, medical benefits and respite.