TAMPA — More than 6 million Americans are living with Alzheimer’s disease, the leading cause of dementia. The family members who care for them are often emotionally drained and isolated.
USF Health’s Byrd Alzheimer’s Center and Research Institute wants those caregivers to know they aren’t alone.
Caregiver education is one of the institute’s three missions, along with patient care and research. Eileen Poiley, the institute’s director of education, said supporting families is inseparable from treating the disease.
“We truly believe that to be a center of excellence for Alzheimer’s disease, you can’t just treat the patient,” she said. “You have to provide support for the family.”
Alzheimer’s progresses gradually, beginning in the hippocampus, the region of the brain that stores short-term memory. The first signs are usually out-of-the-ordinary forgetfulness — not forgetting today’s date, but forgetting the day, month, season and year.
Amyloid plaques clump together outside brain cells, and neurofibrillary tangles of the protein tau build up inside them. The result is inflammation and brain cell death. As the disease advances, the brain shrinks, affecting reasoning, judgment, language, attention and orientation to time, according to the institute.
Watching that deterioration is heartbreaking.
“You’re watching them lose their intellect,” Poiley said. “You’re watching them lose their judgment and logical thinking and lose their memory. So it’s a grieving process almost for caregivers. People think of grief as when somebody passes away. But grief is just dealing with a loss.”
Handling those changes isn’t instinctual, Poiley said, but caregivers can learn approaches that make daily life easier for everyone.
The institute offers free educational services to anyone caring for a loved one with dementia, whether or not the patient is being treated there. A podcast, monthly workshops and a support group are available through its website.
On May 15, the institute held an in-person caregiver conference at the Embassy Suites next to the USF campus — only its second since the COVID-19 pandemic. Last July’s event drew 100 people; this year’s drew 160. Poiley said the institute plans to host the conference twice a year, before and after hurricane season, as long as donor funding allows.
The May program included five lectures: “Understanding Short-Term Memory Loss” and “The Four Priorities of Caregiving,” both by Poiley; “Medications for Alzheimer’s Behaviors: Expectations and Reality,” by Dr. Amanda Smith, the institute’s director of clinical research; and “Managing the Emotions of Caregiving,” by Mindy Bursten, a private practice therapist.
In her presentation on memory loss, Poiley walked through scenarios of patients forgetting where they were going or what they were doing and asked the audience to imagine the fear and frustration. The instinct is to jog the person’s memory, she said. That’s exactly wrong.
There are two realities, she said — “your reality and then there’s the Alzheimer’s reality” — and caregivers have to join their loved one’s.
“How you respond can actually cause them to get agitated or angry, because your reality says this and their reality says this, and you’re telling them, ‘Hey, I’m right. You better listen and join my reality.’ But they can’t.”
How to get help
The Byrd Center and Research Institute offers free education and support for anyone caring for a loved one with dementia, whether or not the patient is treated there. Resources include monthly Zoom workshops, a weekly support group, a long-running podcast and twice yearly in-person conferences.
Byrd Alzheimer’s Center and Research Institute
Caregiver Education Services: https://tinyurl.com/ByrdServices
Caregiver workshops: Every third Thursday from 2-3 p.m. with questions and discussion from 3-4 p.m.
• June 18: The Stage of Alzheimer’s and What That Means for the Caregiver
• July 16: Palliative and Hospice Care: Not Just for the End of Life
• August 20: How Alzheimer’s Affects the Senses – Sight, Hearing, Smell, Taste and Touch
For more information or for the Zoom link, email Rose Hari at rhari@usf.edu.
Caregiver Support Group: Thursdays 2-4:30 p.m. via Zoom. Email Rose Hari for at rhari@usf.edu for the link.
The Alzheimer’s Caregiver Podcast: https://tinyurl.com/AlzPod. More than 200 half-hour episodes are available on the institute’s website and on Spotify.
Recent topics include keeping a loved one engaged, balancing independence with safety, and communication tips for new caregivers.
In-person Caregiver workshops: $25. Embassy Suites, 3705 Spectrum Blvd., Tampa. Next session expected in November or December. Check the institute’s website for updates.