By Amy Geiszler-Jones
With no single test, scan or exam for the disease, getting a diagnosis for Alzheimer’s can be a challenge, Caregivers and patients often have to become advocates if they suspect the disease.
“Some people get lost in the shuffle,” said Jenna Smith, a Wichitan who is a care consultant for the 24/7 helpline of the Alzheimer’s Association, where she answers calls from all over the country as well as Canada, Mexico and sometimes Europe.
Smith is one of the presenters at the 7th annual Kansas Education Conference on Dementia, happening from 8 a.m.-4:30 p.m. Tuesday, Nov. 13, at the Kansas Star Event Center in Mulvane. The conference is expected to attract more than 700 participants, including patients and caregivers who want to learn the latest in clinical updates, research and strategies for living with the disease. Caregivers and patients get a discounted conference registration rate of $50, which includes breakfast and lunch.
Smith, who has master’s degrees in public health and aging, said her session this year will focus on navigating the health care system to get a diagnosis.
“We’ll focus on that and once you have a diagnosis, what you do,” she said. An early-stage patient and his caregiver will co-present the session with her. Her past caregiver sessions at the conference have attracted as many as 450 participants, she said.
Keynote speakers for this year’s conference include Stephene Moore, a registered nurse whose career includes working as a regional director for the U.S. Health and Human Services Department, she also is the caregiver for her husband, former Kansas Congressman Dennis Moore, who has the disease.
Keith Fargo, with the Alzheimer’s Association, will talk about recent research.
Among the early signs of Alzheimer’s are a failing memory, a hard time concentrating, changes in behavior or withdrawal from social activities. But some of those signs can also be associated with normal aging, depression, anxiety or even stress.
That’s the tricky part, said Smith. Say, for example, a patient visits the family doctor to discuss concerns about those symptoms. After administering a mental cognition test and drawing blood to rule out any other health condition, the doctor suggests the likely cause is depression. Even an MRI doesn’t seem to show evidence of any brain changes. After six months of taking an antidepressant, the patient doesn’t feel any better.
Smith said she’s taken those kinds of calls, where a patient is frustrated with a diagnosis. Those are the folks who get lost in the shuffle, she said. That’s when she suggests scheduling a follow-up visit. It’s recommended that a family member or caregiver accompany the patient to provide insight, too.
“And you can go further,” she said. Visits to a neuropsychologist or geriatric psychiatrist will also help in evaluations related to brain and behavior functions. Neurologists can do imaging – such as MRIs or CT scans – to help arrive at a diagnosis.
Once a patient is diagnosed with Alzheimer’s, it’s important to get what Smith calls a care team assembled. It’s a roster that ranges from doctors to legal and financial experts and local social service agencies such as Meals on Wheels.
“There’s a lot to the disease,” said Smith, who called Alzheimer’s “probably the most challenging of diseases.”
It’s important to get a plan in place to deal with the progression of the disease. Driving, finances, living arrangements and legal affairs are among considerations, according to Smith.
For more information or to register for the conference, visit www.alz.org/cwkansas/helping_you. It is hosted by the Central and Western Kansas Chapter of the Alzheimer’s Association, 316-267-7333.
A call for help
The Alzheimer’s Association has a 24/7 helpline that can be reached at 800-272-3900. The TDD number is 866-403-3073. Callers can receive information about aging, brain health and the disease, be connected to experts and find out about local resources. The Alzheimer’s Association website, www.alz.org, also provides advice and resources, including the 10 signs of Alzheimer’s.