Supporting Alzheimer's caregivers
By Tamie Meck
Published Thursday, January 19, 2017 8:39 am
Crawford resident Jess Deegan wants caregivers of loved ones with Alzheimer's or dementia in Delta County to know that they are not alone.
Dr. Deegan facilitates the Dementia-Caregiver Support Groups in Hotchkiss, Surface Creek and Delta. As a facilitator -- he makes it clear he is not a clinical psychologist or a counselor -- he assists others in navigating the many challenges of caring for a person with Alzheimer's or dementia. "I want people to understand what they're facing," said Deegan.
Before moving to Crawford, Deegan studied psychology at the University of California, Santa Barbara, and worked at CSU Bakersfield, where he was a professor of psychology. As a scientist, he specialized in the physiology of color vision. His training in understanding the brain led him to serve on the board of the Alzheimer's Disease Association of Kern County in Bakersfield, and as an officer for the Kern County Commission on Aging and Adult Services.
In 2012 his wife was diagnosed with a form of dementia called mild cognitive impairment, or MCI. In 2014 she was diagnosed with early-onset Alzheimer's. He began attending support groups in Bakersfield. Rather than finish the last 10 years of his career and hire a caregiver, they decided he would retire early. They made a plan to move to Crawford, where they had visited a friend and business associate in the past.
Now he is the caregiver.
Deegan said he was "overprepared" for his wife's diagnosis. To understand what he faced he had to put all of his scientific training aside. He doesn't sugar-coat Alzheimer's. It's a progressive neurodegenerative disease, and it's terminal, "no ifs, ands or buts about it." It also takes its time. By the time Alzheimer's is diagnosed, the brain has already suffered permanent and irreversible damage.
The brain is fascinating, says Deegan. He describes how its collection of billions of nerve cells, or neurons, constantly transmit electrical and chemical signals that control all of the body's functions and movements and senses and thoughts. Every part of the body essentially serves to protect the brain, "because that's where everything happens." With Alzheimer's, the neurons no longer function properly. The senses go, physical changes occur, and the memories of now disappear while older memories can remain. Behavior changes. The situation can lead to feelings of loss of control and helplessness in the people who love them. "The person you knew disappears," he said. "Every day can be totally unpredictable."
He urges caregivers to forget what they know about the person and step into their world. Learning to "live in the Alzheimer's Universe" can give the caregiver more control and take away those feelings of helplessness.
After moving to Delta County he sought out support groups and found two listed in the local paper. One was defunct and the other, sponsored by Delta County Senior Resource Council (DCSRC), stopped meeting when the organization dissolved in 2016.
According to the Alzheimer's Association (www.alz.org), one in nine Americans age 65 and older has Alzheimer's disease; by age 85, it's one in three. Up to 5 percent of Americans under the age of 65 will have early-onset Alzheimer's.
The need for support for caregivers in Delta County is huge, and likely bigger than he believes, said Deegan. According to government census data, in 2010, 20 percent of Delta's roughly 40,000 citizens were over age 65; by 2030, the county is expected to increase its 65-and-older population an estimated 50- to 80-percent.
With help from Leah Lewis, DCSRC's former senior coordinator, Deegan made connections in the local communities and established the first support group in Hotchkiss. Support groups now meet in Cedaredge and Delta; they are supported by the Alzheimer's Association and the Region 10 Area Agency on Aging and the Aging and Disability Resources Center (ADRC). Deegan volunteers in Hotchkiss and Cedaredge, and receives compensation from Crossroads Senior Living in Delta.
Crossroads also offers respite care during the two-hour meetings if people make arrangements in advance. "That is a real benefit," he said. Caregivers often put their own well-being aside, and that's not healthy.
Deegan admits he started the support group because he also needs support and a break from being a caregiver.
Dealing with the grief alone can be overwhelming. Caregivers essentially lose their loved one twice, once when they realize the person they knew no longer exists, and again when their body dies. HopeWest can provide grief support and respite care, but people are welcome to share their feelings at the meetings. "People can talk about whatever they want," said Deegan. "That two hours is huge."
Deegan is seeking guest speakers for the meetings. He wants caregivers to have information about other issues, like end-of-life decisions, powers of attorney and protecting of assets. If legal protections aren't in place, they may have to go through the courts. "If it's dealt with ahead of time, it's much easier."
Now that the organization is a year old it's eligible to be listed in "Colorado 2-1-1," a referral system connecting people to a wide range of community services throughout the state via phone, website or app.
Meeting attendance numbers are increasing. After a year of empty chairs in Cedaredge, people are just starting to regularly attend, he said. He would like to see more people from the North Fork area at the meetings.
Early signs of Alzheimer's can be difficult to detect. Even as warning signs appear, the person may not know they are changing and may even compensate, often unwittingly, for those changes. If uncertain, people are welcome to attend a meeting and ask questions. That may help them make more sense of what they are experiencing, said Deegan. The Alzheimer's Association also offers simple memory tests that can detect early signs of the disease. If they believe the symptoms are more serious, they should contact their doctor.
There is no cure for Alzheimer's, but if it's caught early, medications can add a few years of life, said Deegan. Given today's research, he believes science is on the edge of curing, stopping or even reversing Alzheimer's.
Deegan can be reached at email@example.com or firstname.lastname@example.org, on Facebook at drdeeganii, or at 970-510-0724.