Caregiving Research — Caregiving Years Training Academy

Caregiving Years Training Academy

Caregiving Research

For nearly three decades, we have asked family caregivers about their experiences — what wears them down, what sustains them, and what they need to keep going. This is what they have told us.

Our research approach
Most research stops at the burden. Ours asks the critical second question: What helps?
Large-scale national surveys document the strain family caregivers carry and that strain is real and growing. But very few studies ask family caregivers to name what energizes them, what gives them hope, and what small things make it possible to keep going. We ask family caregivers to share their experiences in their own words in every survey we conduct. We believe capturing stories is as important as capturing data. And we believe the question, What helps? must be at the heart of our work. It is not a common question in family caregiving research. It should be.
30
years of surveying family caregivers
1996
year the research began
4
studies in this research series

Research studies

Available now
Study 01
Fatigue & Hope
125 family caregivers rated their fatigue and hope, named what drains them, and described what keeps them going. The findings reveal a group running on empty — yet still holding on to something.
125 respondents  ·  Analysis by Eesa Kazim, University of Illinois
Read the research → Available now
Study 02
Stress
What are the primary sources of stress for family caregivers — and what strategies, supports, and small habits help reduce it? Findings from our ongoing caregiver stress survey.
1,359 respondents  ·  Ongoing since December 2015
Read the research → Available now
Study 03
Financial Impact
Caregiving carries a hidden financial cost that most family caregivers absorb alone. This study examines the economic strain of caregiving — lost income, depleted savings, and the everyday expenses that add up — and what family caregivers say they need most.
72 respondents  ·  Analysis by Caregiving Years Training Academy
Read the research → Evidence of impact
Study 04
The Six Caregiving Stages™
Across 284 evaluations from family caregivers and healthcare professionals, the data shows that understanding your caregiving stage changes how you experience your journey.
284 evaluations  ·  Family caregivers & healthcare professionals
View the evidence →

About this research

This research series began in 1996, when Denise Brown started sending annual surveys to family caregivers — a practice she learned early in her career at a trade magazine. The surveys asked family caregivers to describe their experiences in their own words, not just check boxes. That commitment to listening closely has guided every study since.

The survey data spans nearly three decades, making it one of the longer longitudinal records of family caregiver experience in the country. Analysis of the current series is conducted in partnership with student researchers from the University of Illinois Urbana-Champaign.

We research to develop programs and services that matter, train professionals who create positive impacts, and drive the discussion around caregiving issues to create change.

Denise M. Brown conducts her research independently, without grants or outside funding. She invests her time into studying the caregiving experience in order to develop the programs and services that can improve the lives of family caregivers. She shares her research so others can develop what family caregivers need.

For Certified Caregiving Consultants

The CCC Research Hub

All of our research is available in full to Certified Caregiving Consultants (CCCs). We developed the CCC Research Hub so that consultants bring their best insights into every client conversation and every community they serve.

Learn About the CCC Program →

Participate in our research

Share your experiences with us.

When you complete our surveys, you help us create the programs that truly help family caregivers. We have ongoing surveys open now — and every response matters.

See Our Open Surveys →
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Explore our free library of interactive tools built for family caregivers.
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Research conducted by Caregiving Years Training Academy. Survey data collected annually since 1996. Current series analysis conducted in partnership with student researchers from the University of Illinois Urbana-Champaign. The Six Caregiving Stages™ is a proprietary framework. © Caregiving Years Training Academy  ·  careyearsacademy.com