New app helps patients, families navigate Alzheimer’s
Just after his Alzheimer’s diagnosis, Sandy Springs resident Ross Perleo found himself frantically searching for information. He picked up the phone and called the Alzheimer’s Association at 2 a.m.
A representative picked up, and he was able to get answers. This is the kind of responsiveness the association strives for as patients navigate a disease that inevitably progresses and changes their needs and living situations. Now, there’s another way: a free mobile app called My ALZ Journey.
Finding the app: a patient’s story
Perleo, 71, went to his doctor 2½ years ago when headaches and falls started becoming a regular part of his life. After a brain scan, he came away from his geriatrician at Emory Health Care with a diagnosis of mild cognitive impairment.
“I completely lost it,” he said. “It was so difficult to sit there on a Sunday night knowing that I had cognitive impairment.”
Unable to sleep, he reached out to the Alzheimer’s Association in the early hours to unburden himself.
“I explained that I just got diagnosed and I needed to learn about every study out there,” he said. “I was trying to help myself. … I had nothing else that I could do.”
Learning about the My ALZ Journey app allowed him to easily introduce family and friends to information. It’s not just patients who feel the effects, he said; relatives want to learn about it, too. He received guidance on home safety for Alzheimer’s patients, tips on diet and exercise, and he noted the app is also available in Spanish.
Service at every step
Alzheimer’s Association Georgia Chapter President Clay Jacobs said the ways in which patients and their loved ones experience a diagnosis are varied. The free app is designed to serve them at every step of an often unanticipated journey from information about memory issues to care planning and communicating about the condition.
“We really looked at this as a way to help provide those resources in places where they aren’t in place and then to be able to be a starting point for families because we knew so often this is the type of thing that they struggle with,” Jacobs said.
The app, developed in partnership with those living with early stage Alzheimer’s, caters to the idea that everyone navigating the disease has different preferences in accessing services and support.
“Some want to go to in-person support groups; some want to be on a phone line; some want to be able to Google and look up questions they have. Ultimately, this is a front door,” Jacobs said. “If they want to find out about local services, they’re able to connect there. If they want to be able to attend classes online, they could do that. If they just have some basic questions and want to know how to talk to their physician or their friends or their family, there are things that they can look up.”
Accessible anywhere
The Alzheimer’s Association has offered these services for years, Jacobs said, but as technology has become a bigger part of daily life, providing access through an app made sense. It’s now available nationwide, and users can customize the services they see based on their ZIP code.
“It’s also incredibly helpful because, if family is spread throughout the country or even throughout the state, they have access to some of the same information and can share that with each other,” he said.
Having the app at hand, Perleo said, has helped him navigate the emotions that come with a life-changing diagnosis.
“When I get into a mood or something, I can go on here,” he said.
Features will continue to evolve based on user feedback, Jacobs explained, and new diagnostic tools and treatments, earlier diagnoses and more complex considerations will factor in.
“The very nature of the disease means that it progresses. And so the same considerations you have now will change six months from now, will change a year from now,” he said. “We want to be available 24 hours a day, seven days a week in the way that people need us and the way they access us, and this app is a different way of doing that.”
