“If you’ve cared for one person with dementia, you’ve cared for one person with dementia. For those of us who find ourselves caring again — on a second, third, or even fourth journey — we learn each journey is different. We’re continuously learning, navigating new challenges, and feeling new emotions.” Sue Ryan

How do you think you would feel if you were caregiving for a second or third person living with dementia? Would you feel more prepared because of your previous experience? If you answered “yes,” you might be surprised by what research is revealing about experienced caregivers.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, both of us have been caregivers more than once. We recently learned about enlightening research from Dr. Emily Mroz, Ph.D., a social-behavioral scientist and Assistant Professor, Tenure Track, who is conducting research at The Nell Hodgson Woodruff School of Nursing at Emory University. Emily coined the phrase “experienced caregiver.” Her research is shedding light on a common phenomenon that affects millions of families: providing care for multiple loved ones diagnosed with dementia, throughout adulthood.

Dr. Mroz studies how people think, feel, and act within their social and personal environments. With training in developmental psychology, gerontology, geriatrics, and public health, she uses her multidisciplinary perspective to develop resources and interventions that support people living with serious illness, family caregivers, and those who are bereaved.

Through her research and interviews with caregivers, Dr. Mroz has identified crucial insights about experienced caregivers that challenge common assumptions and offer practical guidance for those stepping into the caregiving role again.

Today we’re sharing four essential tips for experienced caregivers navigating their second or third dementia caregiving journey.

Tip 1: Avoid Assumptions About Who Is Prepared to Be a Dementia Caregiver

One of the most pervasive myths about caregiving is that experience automatically equals preparedness. It’s reasonable to assume people who have been caregivers before will feel more prepared the second or third time around. As Dr. Mroz discovered, experienced caregivers tend to laugh at this assumption.

Reasons why we make this assumption:

• We believe dating experience helps us recognize red flags and know what we want in a partner.
• We think raising one child prepares us to raise another.
• We assume navigating one career challenge makes us better equipped for the next.
• We believe this pattern seems logical for most life experiences.

Caregiving is different:

• Dr. Mroz’s research reveals a surprising finding: new caregivers often underestimate challenges and report feeling more prepared.
• The hardships and trauma caregivers experienced in previous roles can actually diminish our sense of preparedness.
• Experienced caregivers actually overestimate the challenges ahead and report feeling less prepared, despite our previous experience.
• These aren’t character flaws — they’re realistic responses based on our lived experiences.

Key insights:

• We cannot assume someone is ready for caregiving simply because we’ve done it before.
• Each person’s preparedness depends on individual circumstances, health, resources, and emotional state — not just previous experience.
• Experienced caregivers know firsthand how difficult the journey can be. This knowledge can actually create anxiety about facing those challenges again.

Tip 2: Assess How Prepared You Really Feel

If you’re stepping into the caregiving role for a second or third time, it’s crucial to honestly assess your preparedness across multiple dimensions. Dr. Mroz’s research has identified three distinct ways people feel prepared to be caregivers:

1. Skills and Insights:

• Practical knowledge about navigating the caregiving experience.
• Understanding healthcare systems and knowing what questions to ask doctors.
• Recognizing symptoms and progression patterns.
• Having strategies for daily care challenges.

2. Confidence and Readiness:

• Your internal sense of “I can do this” and “I’m ready for this challenge”.
• Emotional preparedness and belief in your ability to handle whatever comes next.
• Mental readiness to take on the caregiving role again.

3. Health and Resources:

• Your physical health and mental well-being.
• Financial resources available for caregiving needs.
• Access to support systems needed to sustain caregiving over time.
• Current life circumstances and competing demands.

The problem with experienced caregivers focusing only on skills:

• While we often have valuable knowledge from our previous journey, we may lack confidence because of what we went through before.
• We may not have the health and resources we had during our first caregiving experience.
• We might know exactly how to navigate Medicare and the medical system, but feel emotionally drained about dealing with them from our previous experience.

Being honest about all three dimensions helps you understand what support you need and prevents you from thinking you ‘should’ handle everything because you’ve “done this before.”

Tip 3: Don’t Hesitate to Get Involved in Skills Training and Support Groups

One of the most damaging assumptions experienced caregivers face is that they don’t need help because they’ve already been through this journey. Unfortunately, this assumption also often comes from others and impacts experienced caregivers sharing they need help.

The infrastructure challenge:

• Much of the caregiver support infrastructure has been designed with new caregivers in mind.
• Evidence-based programs, support groups, and educational resources are often marketed to first-time caregivers.
• Experienced caregivers can be made to feel the resources aren’t meant for them.

Why returning to training and support groups is valuable:

Refresher Benefits:

• You’ll be reminded of strategies you used in your previous journey.
• Every caregiving situation is different — what you needed before may not be what you need now.

New Learning Opportunities:

• The field of dementia care is constantly evolving with new research, treatments, and resources.
• What you learned one, five, or ten years ago may have been updated.
• New caregiver tools and strategies are regularly developed to help you.

Opportunities to Give Back:

• Your stories and insights help others who are just beginning their journey as caregivers.
• Helping others creates a meaningful sense of purpose alongside your own learning.
• Your experienced perspectives are valuable to support groups and training programs.
• Sharing stories reminds you of lessons, resources, strategies, tools you’ve used.

Validation and Connection:

• Being around others who understand the challenges provides crucial emotional support.
• Whether they’re new to caregiving or experienced like you, community connection matters.
• Shared experiences create bonds and reduce isolation.

Needing support doesn’t diminish your experience or expertise — it acknowledges that caregiving is inherently challenging, each experience is unique, and everyone benefits from community, education, and resources.

Tip 4: Share Your Stories with Grace, Not Judgment

The stories we tell about our caregiving experiences have profound power to shape our health, well-being, and sense of identity. Dr. Mroz’s research focuses specifically on how caregivers tell stories from their past exper- iences and how these narratives can influence their preparedness for future caregiving roles.

Approaching your experiences with grace means:

Not Judging Yourself:

• Avoid harsh self-criticism about decisions you made or things you didn’t know.
• Don’t beat yourself up for moments when you felt overwhelmed or made mistakes.
• Remind yourself it is our goal to do the best we can with available resources and knowledge.

Focusing on Growth and Learning:

• When reflecting on difficult experiences, identify what you learned about yourself, your resilience, and ways to provide care.
• Look for moments of strength, love, and connection alongside the difficulties.
• Recognize your capacity to handle challenges, even when they felt overwhelming.

Acknowledging the Full Experience:

• Don’t minimize the challenges or overlook moments of joy, meaning, or connection.
• Both the struggles and the meaningful moments are part of your story.
• Honoring both is key — neither all negative nor unrealistically positive.

Recognizing Context:

• You couldn’t possibly know in the moment whether an experience was ultimately “good” or “bad”.
• With time and perspective, you can often see growth, learning, or unexpected benefits.
• Context matters — what seemed devastating at the time may have led to important insights.

The therapeutic value of storytelling:

• Stories told with grace and self-compassion tend to be more empowering and healing.
• How you tell your caregiving stories can be connected to your health and sense of preparedness.
• Sharing stories with others — in support groups, with family, or in research — often provides meaning and validation.

The Reality of Multiple Caregiving Journeys

Dr. Mroz’s research addresses a phenomenon that will only become more common as our population ages. Many people will find themselves caring for multiple family members with dementia throughout their adult lives — perhaps a grandparent, then a parent, then a spouse, or various combinations of family members.

Each caregiving journey is unique:

• The care recipient’s personality, type of dementia, and progression pattern create different experiences.
• Family dynamics vary with each diagnosis and journey.
• Your own life circumstances, health, resources, and support systems change over time.
• What worked in one caregiving situation may not work in another.

This reality means it’s important for even those of us who are experienced caregivers to approach each new caregiving role with fresh eyes, acknowledging our valuable experience, our current needs, and our limitations.

Breaking Down Barriers to Support

One of the most important insights from Dr. Mroz’s work is recognizing how assumptions about experienced caregivers can create barriers to getting needed support.

Common barriers:

• Family members and friends assume experience equals preparedness.
• Healthcare providers may not assess experienced caregivers’ current needs.
• Experienced caregivers feel pressure to appear competent and in control.
• Experienced caregivers hesitate to join support groups or classes meant for “newcomers”.

Breaking down these barriers requires:

• Education and the awareness that experienced caregivers still need support.
• Assessing all caregivers’ needs regardless of previous experience.
• Permission for experienced caregivers to acknowledge limitations and seek help.
• Recognition that sometimes experienced caregivers need even more support because they understand the challenges ahead.

Move Forward with Realistic Expectations

The goal isn’t to discourage those of you who are experienced caregivers or make you feel helpless. It’s to support your creating realistic expectations and ensuring you receive the best support for you and your care receiver.

Experienced caregivers bring valuable assets:

• Better understanding of healthcare systems.
• More realistic expectations about disease progression.
• Proven resilience, coping strategies, and solutions.
• Knowledge of what questions to ask and resources to access.

The key is balance:

• Recognize your strengths while honestly assessing current needs and circumstances.
• Leverage your knowledge while getting support for your current situation.
• Ask for help — It’s wisdom gained through experience, not weakness.
• Knowing how challenging caregiving can be, you’ve already learned no one, including you, should navigate your caregiving journey alone.

You’re Not Alone in This Journey

Whether this is your first, second, or third time as a dementia caregiver, you’re part of a community of people who understand the challenges you face. Your experience is valuable, your struggles are real, and your need for support is valid.

The research being conducted by Dr. Mroz and others is helping to create better understanding of experienced caregivers and develop resources specifically designed for your unique situation. By participating in research, sharing your stories, and connecting with other caregivers, you’re contributing to knowledge that will help future caregivers.

Most importantly, give yourself grace.

Caregiving is one of the most challenging roles anyone can take on, and doing it more than once doesn’t make you superhuman — it makes you remarkably dedicated and resilient.

Dr. Mroz’s Study — The Importance of Research for Experienced Caregivers

Dr. Mroz’s study is part of a growing recognition that experienced caregivers represent a significant population with unique needs and strengths. Her virtual research study involves participants completing surveys about their caregiving experiences and sharing their stories to help researchers understand the differences between new and experienced caregivers.

Study details:

• You are a valuable resource. Research is incredibly important for developing resources specifically tailored to experienced caregivers.
• Focuses on people currently in active caregiving roles, including those early in their journey with a second or third care recipient.
• Participants receive a $50 gift card honorarium.
• Sessions are conducted virtually and take between one to two hours.
• You can participate alongside other dementia caregiver research studies. If you’re interested in participating, click HERE

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We’re all on this journey together.