Caregiver Compliance Training & Surveying | Nevvon

The Hidden Costs of Dementia Care: How Training Can Ease the Burden on Family Caregivers

Written by Allan Levine | Apr 8, 2025 2:00:00 PM

According to research published in Alzheimer’s & Dementia: Translational Research & Clinical Interventions, unpaid caregivers are responsible for 45% of the $271 billion annual cost of dementia care—a staggering $123 billion in unpaid labor and out-of-pocket expenses. The findings were summarized in this McKnight’s Home Care article and based on a 2024 study led by Dr. J. Scott Andrews and colleagues, available here.

Behind that number are millions of family members navigating the emotional, physical, and financial challenges of caregiving—often with little to no training. For home care agencies, this presents an opportunity to reimagine caregiver support. By offering accessible dementia care education through tools like GUIDE and PocketRN, providers can lighten the load for families and improve outcomes across the board.

Family Caregivers: An Essential, Under-supported Workforce

Caring for a loved one with dementia isn’t just a few extra chores. It involves medication management, behavioral interventions, daily hygiene, fall prevention, and emotional support. In many cases, family caregivers are expected to perform complex care tasks without any clinical background.

Yet they are often excluded from formal training programs. According to the Alzheimer’s Association, nearly 60% of family caregivers rate their emotional stress as “high” or “very high”, and over one-third report symptoms of depression. 

These are not isolated cases—they reflect a growing national crisis. The demand for dementia care is rising as the population ages, but professional caregiver shortages leave family members to fill the gap.

The Training Gap That Compounds the Crisis

While professional caregivers receive at least some structured training, most family members are left to figure it out on their own. This lack of education has real consequences:

  • Increased risk of injury (e.g., falls, wandering)

  • Higher rates of emergency room visits

  • Unintentional harm due to missed medications or misunderstandings

  • Emotional exhaustion that leads to burnout or breakdown

Even for paid caregivers, the quality of dementia training varies widely. Agencies using paper-based systems or fragmented learning tools often struggle to ensure consistency, leaving caregivers unprepared and clients underserved.

For agencies working with both professional and family caregivers, this creates a serious risk: poor care quality, high turnover, and dissatisfied clients.

A Better Approach: Including Families in the Caregiver Training Ecosystem

Here’s where Nevvon can help.

Training That’s Accessible, Practical, and Multilingual

Nevvon’s mobile-friendly, asynchronous training platform built specifically for home care. It offers:

  • Bite-sized dementia care lessons that fit into caregivers’ schedules

  • 11+ languages to serve diverse households

  • Modules on fall prevention, communication strategies, infection control, and more

  • Designed for both professional and family caregivers

By giving families access to the same essential training content, agencies can improve care continuity, reduce errors, and show they value family involvement. It’s also an efficient way to ensure everyone around the client understands how to respond to dementia-related behaviors.

PocketRN: Live Support When Families Need It Most

For moments when online training isn’t enough, PocketRN provides real-time access to registered nurses who specialize in home care.

  • Available nights, weekends, and holidays

  • Caregivers can ask questions and know that someone is right there with them when something might come up.  

This support can reduce unnecessary hospital visits, build caregiver confidence, and improve client safety—all without adding strain to agency nurses.

Together, Nevvon and PocketRN empower both paid and unpaid caregivers with the knowledge and support they need, when they need it.

GUIDE

The Centers for Medicare & Medicaid Services (CMS) is also recognizing the vital role of family caregivers through its GUIDE (Guiding an Improved Dementia Experience) Model, going fully live July 2025. This initiative is designed to support people living with dementia and their unpaid caregivers by funding community-based, person-centered dementia care. A key element of the GUIDE Model is providing caregiver training, education, and support services, including respite care and 24/7 access to a care navigator. PocketRN is a participating provider in the GUIDE Model, offering on-demand nurse support to caregivers as part of this CMS-backed program. By formally integrating caregiver education into the care delivery model, CMS is signaling a shift: family caregivers are not just part of the care journey—they’re essential to its success.

Why This Matters for Agencies

Many agencies focus their training investment solely on paid staff. But in dementia care, family caregivers are often a daily presence—helping with medication, redirecting behavior, even performing personal care.

When families are excluded from the education process, everyone loses:

  • Care becomes inconsistent

  • Clients experience more stress and confusion

  • Agencies get more after-hours calls, complaints, or turnover

On the flip side, agencies that share access to platforms like Nevvon and PocketRN position themselves as client-centered, high-quality providers. They also gain:

  • Higher client satisfaction

  • Fewer emergency escalations

  • Improved caregiver retention

  • A competitive edge in recruitment

Policy Gaps and What Agencies Can Do

Despite the scale of the problem, family caregiver training is not widely supported by public policy. Most states don’t reimburse agencies for providing education to unpaid caregivers. But that doesn’t mean it’s not worth doing.

Home care providers that proactively offer training to families can:

  • Differentiate themselves in a competitive market

  • Reduce liability through better-informed caregivers

  • Strengthen client trust and loyalty

  • Meet the expectations of value-based care models

Even small investments in education and support—like sharing select Guide modules or offering limited PocketRN access—can make a meaningful difference.

The Bottom Line

The $123 billion burden on unpaid caregivers isn’t just a statistic. It’s a reflection of millions of people doing their best with too little support.

Home care agencies have the tools to change that—right now.

By extending dementia training and nurse support to families through Guide and PocketRN, providers can reduce risk, improve care, and help caregivers feel less alone.

It’s not just good care—it’s the right thing to do.