Alzheimer’s Project Cares for Caregivers
Local Nonprofit Reaches Out to Support Unsung Heroes
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Photo by Scott Holstein
Services and support from Alzheimer’s Project have helped Tricia Culbertson deal with the challenges of being a caregiver for her mother, Molly Murray.
Tricia Culbertson has a full-time job, but she has no salary, no “coworkers” and no benefits, other than the satisfaction of knowing her aging parents are well cared for. She is a caregiver, and Culbertson would have become increasingly isolated if it hadn’t been for one Tallahassee-based nonprofit: Alzheimer’s Project Inc.
“I’ve been unable to return to work since 2004 and have lost all my professional contacts,” she said. “I sort of fell into a world where I knew nothing about what I was doing … through Alzheimer’s Project, I was invited to participate in a number of events — educational and support groups. I made friends among those groups.”
Alzheimer’s Project Inc. (alzheimersproject.org) has been caring for caregivers in Tallahassee since 1991. The brainchild of St. Paul’s United Methodist Church’s then-pastor Rev. John Fletcher, the nonprofit started as a small outreach, housed at the church, supporting those caring for elderly relatives with Alzheimer’s or related dementia.
More than 20 years later, Alzheimer’s Project is still based at St. Paul’s here in Tallahassee, but has expanded to serve local caregivers in 12 counties of the Big Bend. “We provide respite care, support groups, in-home care and educational resources to current and former caregivers,” said Bill Wertman, CEO and director of Alzheimer’s Project. “And all of our services are completely free to anyone who needs them.” And despite the name, the nonprofit is not limited to serving caregivers of those with Alzheimer’s; they also provide services to families caring for people of all ages with disorders such as autism and Down Syndrome.
What is Alzheimer’s Disease?
A new individual is diagnosed with Alzheimer’s disease every 69 seconds, and it affects 5.4 million people in the United States alone. For those with the disease, a diagnosis of Alzheimer’s can mean from two to 20 years of decline. Alzheimer’s disease is now the fifth leading cause of death in America for those over 65.
Wertman, who also teaches in the social work departments at both Florida State and Thomas universities, is quick to point out that “forgetfulness due to aging or increased stress is not dementia or Alzheimer’s disease. ‘Dementia’ is an encompassing term to define the loss of cognitive functions such as thinking, remembering and reasoning of sufficient severity to interfere with a person’s daily functioning.”
Dementia, he explains, is not a disease in itself, but a group of symptoms. When a person has dementia, he/she will lose the ability to think, reason and remember and will inevitably need assistance with activities of daily living such as dressing and bathing. Changes in personality and mood also are symptoms of dementia. Very few dementias are treatable or reversible, and Alzheimer’s disease is the most common form of untreatable, irreversible dementia.
The stress on a caregiver — often the child or spouse of the person with dementia — can take its toll. Lynda Hartnig cared for her father with Alzheimer’s disease until he passed away in 2011. “You know the person you love is there,” she said, “but they’re slipping away. There are other diseases where you have hope, and with this disease there is no hope [of a cure]. They can’t even let you know what they want anymore.”
Respite: Rest for the Weary
Caring for someone with Alzheimer’s or related dementia can take both a physical and psychological toll on the caregiver. Because of that stress, respite care is the primary outreach of Alzheimer’s Project. “The idea behind respite care is to give those caregivers a break,” said Wertman. “A few hours to go grocery shopping, get their hair cut or just take a nap.”
A respite day is designed to be engaging and interactive for the client. From 9 a.m. until 3 p.m., they are under the care of experienced staff with a ratio of two clients to each staff member or trained volunteer. The day begins with play therapy, which might be a game like Bingo; followed by music therapy, a nice lunch and pet and/or art therapy. Occasionally, they also offer a seated yoga instructor and a monthly sing-along with children from Cornerstone Learning.
All therapy is administered by certified therapists, and thanks to strong relationships with organizations like Tallahassee Memorial Hospital and FSU, specialists in communication disorders, translators for non-English speakers and qualified healthcare professionals are always available.
“Sometimes, we also engage in some aromatherapy through cooking projects,” Wertman explained. “You want to see someone suddenly remember a familiar scent that brings a quick smile to their face? Bake some chocolate chip cookies!”