As the number of individuals with Alzheimers disease continues to grow, so does the community of family and caregivers who look after their loved ones. While substantial research has been conducted concerning caregivers of individuals with moderate- to late-stage Alzheimers disease, few studies have focused on the caregivers of individuals who are in the early stages of the illness.
“We have knowledge and better techniques today that allow us to diagnose Alzheimers disease earlier in its course,” says Theris Touhy, associate professor at the Christine E. Lynn College of Nursing at Florida Atlantic University. “This has resulted in earlier diagnoses of growing numbers of individuals. There is not a great deal of research on their needs and concerns, as well as those of their caregivers, which are very different from those in later stages of the illness.”
A primary goal of one of the College of Nursings Centers, the Louis and Anne Green Memory and Wellness Center, is to research innovative approaches to the diagnosis and treatment of memory disorders. Many studies focus on new interventions designed to help individuals with memory problems to maintain the highest possible level of functioning. Additional studies focus on interventions designed to assist caregivers.
Touhy recently co-directed two studies with Denise Sparks, Ph.D., director of the Center, and Debra Hain, assistant professor. The data from these studies will be used to help design an individualized assessment and intervention protocol for caregivers, which will be used in a geriatric nurse practitioner consultation program at the Center.
“Caregivers often risk emotional, physical, and financial burdens,” said Touhy. “We need to explore the issues of caregivers of individuals who are in the early stages of the illness so that we can create interventions specifically designed for them.”
Caregivers may be asked questions like, “What matters most to you right now?” They might discuss the difficulties of taking over the spouses responsibilities or concerns over what to expect as the loved ones condition declines. Researchers plan to follow these caregivers over time as they progress with this illness, which has not been done before.
Sustaining the Caregiver
“It is hard enough to watch a spouse slowly lose memory. On top of this, caregivers may be dealing with driving issues or taking over the responsibilities of household management that had been shared with their spouses before the illness,” said Sparks.
The Memory and Wellness Center offers year-round Sustaining the Caregiver activities, which are a complimentary series of programs and services tailored to the needs of those caring for individuals with memory loss. Made possible through a grant from Boca Raton Community Hospital, the Center offers counseling, care consultations, support groups, educational presentations, relaxation and yoga classes, a caregiver research library, and internet access for research.
While people with memory disorders participate in the adult day program at the Memory and Wellness Center, caregivers can attend a support group for caregivers of individuals in all stages of Alzheimers.
“Relaxation techniques and support tactics that are specifically designed for the caregiver ultimately benefit everyone involved,” said Glenda Connolly, LCSW, coordinator of family services at the Memory and Wellness Center.
