For years, dementia care specialists across Wisconsin have worked closely with individuals and families navigating the realities of Alzheimer’s disease and related conditions. In their day-to-day roles—fielding calls, guiding clients, and coordinating services—they began noticing a shift: more people in their 40s and 50s were showing signs of dementia and struggling to find appropriate support. Alzheimer’s disease is the most common type of dementia, and any dementia diagnosed before age 65 is called young-onset dementia.

Those encounters revealed a troubling gap. Many of the existing resources and care pathways were designed for older adults, leaving younger individuals without clear guidance. Professionals themselves often found it difficult to direct families to appropriate services, especially as younger people face unique challenges tied to careers, finances, and parenting and caregiving.

Recognizing the growing need, a team led by Jody Krainer of the Wisconsin Alzheimer’s Institute brought together experts from across the state to develop new tools specifically for this population. Their goal: create practical, accessible tools that reflect the realities of young-onset dementia and help families better navigate a complex and often confusing journey.

The initiative, developed through the Wisconsin Dementia Resource Network (WDRN), reflects nearly a year of work among professionals across agencies, including Wisconsin dementia care specialists and representatives from the Alzheimer’s Association Wisconsin Chapter. Their process and the tools they developed was detailed in a recent WDRN webinar recording that outlined the challenges of young-onset dementia.

Responding to a growing need

Krainer, who manages the dementia resource network, said the project began after their advisory board members repeatedly reported a noticeable rise in younger individuals seeking help.

“They had more frequent contact with individuals living with younger onset dementia,” she explained, noting that these individuals and families also often struggled to access services tailored to their needs.

Unlike late-onset dementia, which typically affects individuals over age 65, young-onset dementia can appear as early as a person’s 30s or 40s and accounts for roughly 5% of all dementia cases. But despite its impact, the condition remains less visible in public health planning and community services. Recognizing these gaps, Krainer assembled a workgroup that included herself, Jen Harders and Trisha Witham, both dementia care specialists with Wisconsin Aging and Disability Resource Centers, and Heidi Neeley of the Alzheimer’s Association Wisconsin Chapter.

The team initially set out to create a “caregiver map”—a visual tool to guide families through the dementia journey. But early discussions revealed a core restraint to that approach: the experience of young-onset dementia doesn’t follow a predictable path.

Building on that concept, they created two tailored resources:

• A guide for obtaining a cognitive evaluation for younger individuals – Click here to download a pdf of the guide
• A broader “Now What” guide specifically for people with young-onset dementia and their care partners – Click here to download a pdf of the “Now What?” guide

Both guides are designed to be flexible, non-linear tools that meet people wherever they are in their journey. “We wanted to make sure it wasn’t overwhelming, but still acknowledged that there are different roadblocks,” Witham said.

The team emphasized that young-onset dementia presents distinct social and medical challenges. Diagnosis can take up to four years on average, with patients often seeing multiple doctors before receiving answers. Symptoms may also differ from typical dementia presentations. Memory loss is not always the first sign; instead, individuals may experience changes in judgment, behavior, or executive functioning. These differences can lead to frequent misdiagnosis as mental health issues or stress-related conditions.

Compounding the difficulty, many individuals are still working, raising children, or supporting aging parents at the time of diagnosis. This can result in financial strain, disrupted careers, and shifting family roles.

“There’s a lack of awareness and understanding,” said Harders, noting that stigma and limited peer support can further isolate those affected.

A personal catalyst

The webinar highlights a family’s personal experience navigating Huntington’s disease, a genetic condition that can cause young-onset dementia symptoms. The challenges endured when one family member’s diagnosis initially went unrecognized, as their behavioral changes were attributed to relationship issues rather than neurological decline. The experience highlighted how easily dementia symptoms in younger individuals can be misunderstood; and the devastation caused by a delay in diagnosis or misdiagnosis. An accurate diagnosis resulted in a “shift from blaming behaviors to looking at the brain,” said the family member. That story became a powerful motivator for the team’s work.

The creation of the Young-Onset Dementia guides marks an important step toward improving support systems for young-onset dementia in Wisconsin. But the team hopes their work will also spark broader awareness and replication in other regions.

“People enter the journey at different points,” Krainer said. “We wanted something that allows them to start where they are—and keep moving forward.”

Related links:

Find the link to a recording of the team’s webinar about creating the resources, and links to all past WDRN webinars and resources, on the WDRN Resource Library webpage

Our “First steps after diagnosis” page has more information about what to do after a dementia diagnosis

Visit our “For Caregivers” webpage with links to resources and hotline numbers to call related to Alzheimer’s disease

Find contact information and links to memory care clinics throughout the state on our Memory Clinic finder page.