Caregivers Shoulder Burden of Dementia Care Navigation: The Alzheimer’s Association Offers Support & Guidance
Over 7 million older adults (about 1 in 9 people) in the United States have Alzheimer’s disease, a type of dementia that affects memory, thinking, and behavior. The progressive disease worsens over time until individuals lose the ability to carry on a conversation and respond effectively to their environment.
On average, a person with Alzheimer’s lives four to eight years after diagnosis, but individuals can live as long as 20 years. As the disease progresses, people living with Alzheimer’s are less able to care for themselves and by the late stage of the disease they require round-the-clock care. Much of the responsibility for care and navigating care falls on the nearly 13 million family members and loved ones who act as family caregivers and contribute over $446 billion in unpaid care every year.
Monica Moreno
“Because the Alzheimer’s disease continuum is so long and changing and because no two individuals go through the same experience, caregivers don’t have an easy roadmap to help them figure out what happens next, what to do, and how to plan for the future,” said Monica Moreno, Senior Director, Dementia Care Navigation, Alzheimer’s Association. “Navigating care for the person living with dementia can be extremely challenging and families often feel they’re all alone.”
Dementia care navigation services help people living with Alzheimer’s disease and their caregivers find their way through the fragmented and complex health care system by leveraging existing systems and educational resources focused on the lived family experience. The Alzheimer’s Association offers a variety of such resources directly to individuals living with dementia and their families, as well as to health care providers, so they are aware of the complexities of a dementia diagnosis and provide the support families require throughout their journey.
Dementia Care Navigation Should Start Early
Navigating Alzheimer’s care should start before symptoms occur, with a focus on helping people access the services needed for early detection and diagnosis, according to Moreno. That is why the Alzheimer’s Association is educating primary care physicians about the warning signs of the disease and how to screen for it.
“Cognitive screening should be conducted at every annual wellness visit for people 65 and older,” she said. “If the patient needs a referral to a neurologist or other specialist, the process for doing so should be seamless and everyone on the care team should be kept in the loop.”
Early screening and diagnosis also give patients the best opportunity to access clinical trials and treatments to slow the progression of the disease, most of which are targeted to very early stages of the disease. Even a short time gap between diagnosis and trial participation can be detrimental to trial access, according to Moreno.
Early awareness of brain health and risk reduction provides patients the opportunity to focus on potentially modifiable risk factors as outlined in the Alzheimer’s Association’s U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER). This two-year clinical trial found that lifestyle interventions such as diet, exercise, heart health, cognitive challenge, and social engagement can protect cognitive function in older adults who are at increased risk for cognitive decline.
A GUIDE to Comprehensive Dementia Care and Support
Proven dementia care programs demonstrate that care navigation, caregiver support, and coordinated care significantly improve outcomes for people living with dementia.
The Alzheimer’s Association, along with other dementia care advocates, worked diligently toward the 2024 introduction of the GUIDE (Guiding an Improved Dementia Experience) Model, a voluntary, nationwide initiative to improve the way dementia care is delivered. The eight-year pilot program outlines requirements for dementia care navigation, and Medicare makes these services available at no cost to those who qualify. The Alzheimer’s Association provides a list of free services to families who qualify.
Under the program, each family is paired with a dedicated dementia care navigator who connects them to vital services, such as education programs and support groups, respite care, and transportation. A clinical care team of professionals, like nurse practitioners and social workers, provides additional support, including medication management and counseling. Working in close collaboration with the individual’s primary care physician and specialists, the entire care team delivers seamless, person-centered dementia care throughout their journey.
“Currently, over 300 GUIDE participants are delivering services across the country,” Moreno said. “The Alzheimer’s Association encourages everyone who is eligible to enroll. Eventually, we would like to see this be a permanent benefit of Medicare and for the program to expand beyond Medicare to other insurers.”
“The support we received through GUIDE was invaluable,” said Ed Ruiz, a caregiver for his parents. “It helped us better understand the care our parents should be receiving and how to advocate for it. Our care navigator, Jennifer, guided us every step of the way, answering our questions and even coordinating with doctors and insurance when we weren’t getting answers. Having GUIDE made caregiving significantly easier for our family.”
Support, Guidance and Connection for Newly Diagnosed People
Newly diagnosed people and their families can navigate the earliest stages of an Alzheimer’s or dementia diagnosis with the Association’s My ALZ Journey® app. The app, developed under guidance from the Association’s Early-Stage Advisory Group, provides step-by-step support, tailored tools and trusted information to make early-stage planning easier. It includes personalized resources, local support, information based on real experiences, and more.
“Our Early-Stage Advisory Group was instrumental in the development of the app,” Moreno said. “They let us know how important it was to have easy-to-use technology to find the information and resources they need in one place, instead of randomly searching the web and coming up empty.”
“I found the My ALZ app simple to use and easy to understand,” said Jeff Marcum, 52, who is living with Younger-onset Alzheimer’s disease. “It gives a broad overview of the disease, helps you recognize the symptoms, and allows you to enroll in courses to learn more. I especially appreciated learning how Alzheimer’s affects the brain.”
Navigating Dementia Care is a 24/7 Job
Caring for a loved one with dementia or Alzheimer’s is a 24/7 job. That is why the Alzheimer’s Association offers a 24/7 Helpline with free support for people living with dementia, caregivers, families, and the public.
Anyone can contact the Helpline, day or night via phone (800-272-3900), live chat, or online at alz.org. Masters-level clinicians help by assessing the caller’s needs, creating a personalized action plan, providing resources, and linking them to services in their local community.
“We encourage those living with Alzheimer’s to use the Helpline if they need general information or something specific to their situation,” Moreno said.
The Association also has a free online community, ALZConnected®, for people living with dementia and those who care for them. Members can post questions about dementia-related issues, offer support, and create public and private groups around specific topics.
“ALZConnected is a robust and supportive group of people who understand what you’re going through,” Moreno said. “It’s not uncommon for someone to post a question, thought, or concern and get responses immediately.”
The Alzheimer’s Association new Education and Training Center (alz.org/education) provides practical information on warning signs, communication, caregiving skills and planning for the future. The Center makes it easy to learn about Alzheimer’s and other dementias by offering free classes, online programs and easy-to-use resources for families and the broader community.
Another resource, the Association’s Community Resource Finder, provides easy access to resources, community programs, and services including care at home, housing options, and medical services.
“We estimate that the total cost of care for someone with dementia is upwards of $400,000 and that family caregivers bear over $280,000 of that cost in the form of unpaid caregiving and out-of-pocket expenses,” Moreno concluded. “These free services can help fund or offset these costs for families in need, helping to reduce the financial toxicity associated with the disease.”
Additional Reading:
2026 Alzheimer’s Disease Facts and Figures
