The Caregiver's Journey Podcast

"When it comes to caregiving, the assumption about being able to take what we've learned and just naturally grow is not always going to be true."

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, and we recently learned about enlightening research from Dr. Emily Mroz, a researcher at Emory University's School of Nursing who coined the phrase "experienced caregiver." Her research is shedding light on a common phenomenon that affects millions of families: providing dementia care for multiple loved ones throughout adulthood.

Dr. Mroz is a tenure-track assistant professor and social behavioral scientist who studies how people think, feel, and act within their social and personal situations. 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.

Full Show Notes

https://thecaregiversjourney.org/37-studying-experienced-caregivers-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• Dr. Emily Mroz, assistant professor and social-behavioral scientist, discusses her research on improving how patients and caregivers navigate serious illnesses such as dementia, end-of-life care and bereavement.
• Link to study flyer here
• To join this study, visit survey.qualtrics.emory.edu/jfe/form/SV_cYfshxWcThSSV5s.
• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

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

Tip 2: Assess How Prepared You Really Feel

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

Tip 4: Share Your Stories with Grace, Not Judgment

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:

• 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 about one to two hours
• Can participate alongside other dementia caregiver research studies
• Research is crucial for developing resources specifically tailored to experienced caregivers

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“An educated and confident family caregiver who knows what to do in their role is really the absolute best medicine for the care receiver.” Dr. Carolyn Clevenger

Do you know extensive research specifically focused on dementia caregivers is being conducted? Are you aware of innovative studies designed to equip family caregivers with navigation skills? Now you will, and you’ll be learning about valuable opportunities to strengthen your caregiving journey.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we are continuously learning new ways to support our health and well-being, and that of our care receivers. We recently discovered the groundbreaking dementia caregiver research, the CANDO Study, Dr. Carolyn Clevenger, DNP, RN, GNP-BC, AGPCNP-BC, FAANP, FGSA, FAAN, Professor at the Emory University Nell Hodgson Woodruff School of Nursing is conducting. When most people think about dementia research, they focus on studies involving people living with dementia or pharmaceutical treatments. This crucial area of research focuses on supporting the family caregivers themselves.

Dr. Clevenger is a professor and gerontological nurse practitioner who is nationally recognized as an education leader in advanced practice nursing and geriatrics. Carolyn founded, and directs, the comprehensive dementia care model called Integrated Memory Care (IMC), which provides memory and primary care in a single integrated approach for people living with dementia and their care partners.

Full Show Notes

https://thecaregiversjourney.org/36-learn-to-navigate-support-systems-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• Dr. Carolyn Clevenger, a nationally recognized educational leader in advanced practice nursing, geriatrics and gerontology, shares her groundbreaking work on dementia family caregiver education programs that teach new caregivers how to transition into the role and navigate various support systems.
• For more information about joining this study, visit scholarblogs.emory.edu/CAN-DO/.
• Savvy Caregiver course: Available face-to-face or online (in-person version includes support group benefits)
• “Best Programs for Caregivers” website: A collaboration between the Benjamin Rose Institute on Aging and Family Care Alliance featuring only research-proven programs.
• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Additional Resources Mentioned

Takeaways

Tip 1: Understand Different Levels of Care Early

• Home-Based Care
• Community-Based Programs
• Residential Care Options

Key considerations:

• Each level has different eligibility requirements and payment structures
• Availability varies by state—some follow federal guidelines, others have state regulations
• People often wait until they desperately need memory care but try to access assisted living instead, creating unnecessary stress

Tip 2: Stay Ahead of Financial Challenges

• Protect your assets while maintaining oversight
• Understand the early warning signs
• Watch for judgment impairment issues

Tip 3: Leverage Legal Support from Elder Law Experts

• What sets elder law attorneys apart
• Specialized dementia expertise
• Long-term benefits

Tip 4: Take Evidence-Based Classes

• What makes evidence-based courses effective
• Measurable outcomes

The CAN-DO Study: Training Caregivers as Navigators

Dr. Clevenger's current research project, CAN-DO (Caregiver As Navigator Developing Skills Online), trains family caregivers to navigate four critical systems: healthcare, financial, legal, and family systems.

Course structure:

• Six-week online course following three families through different types of dementia
• Each day presents real-life scenarios with appropriate responses and preventive measures
• Videos from subject matter experts including elder law attorneys, investigators, estate planners, and healthcare providers

Is your loved one in a memory care community, or are you considering moving them into one? Understanding how to build a collaborative relationship with the care team is crucial for ensuring the best outcomes for your loved one.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that creating a true partnership with care community staff can dramatically improve quality of care and reduce stress for everyone involved.

We recently spoke with James Lee, CEO and co-founder of Bella Groves, an award-winning memory care community. With over 17 years of experience in senior living and memory care, James has developed valuable insights on how to transform what is often an adversarial relationship between family caregivers and professional caregivers into a collaborative partnership.

Full Show Notes

https://thecaregiversjourney.org/35-build-a-partnership-with-your-care-community-six-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Assess the Overall Fit

When looking for a memory care community, many families focus on practical aspects like location, price, and amenities. While these factors are important, James suggests that philosophical alignment and rapport with the management team are even more crucial for long-term success.

When evaluating potential communities, James recommends shifting your mindset from "us versus them" to "us collectively versus dementia." This perspective can transform the relationship from the beginning.

Tip 2: Embrace the Community Aspect

Moving your loved one from home to a community setting represents a fundamental shift in their care environment—from one-on-one care to being part of a group.

Tip 3: Acknowledge Your Role Has Changed

When your loved one moves into a care community, your role shifts from being the primary caregiver to being a care partner working alongside professional caregivers.

Tip 4: Recognize That the Diagnosis Will Progress

A critical aspect of the care partnership is understanding that your loved one's condition will continue to change over time. In fact, by the time someone moves into a memory care community, they're often in the steeper part of their dementia journey where changes happen more rapidly.

Tip 5: Acknowledge Your Grief

The dementia journey involves ongoing loss, a phenomenon Sue calls "drip grief." As your loved one's condition progresses, you experience new losses almost daily—abilities that disappear, memories that fade, personality changes that emerge.

Tip 6: Engage with the Community Caregiving Team

The families whose loved ones have the best quality of life tend to be those who actively engage with the care team. This engagement goes beyond basic communication to building genuine relationships with the people caring for your loved one.

Building a True Partnership

Creating a collaborative relationship with your loved one's care community team isn't just about being nice—it's about achieving the best possible outcomes for your loved one with dementia.

By reframing the relationship from "us versus them" to "us collectively versus dementia," you can transform what is often an adversarial dynamic into a true partnership. As James explains, "You are your loved one's expert, we are dementia experts. And the two together give us the best chance to get this right."

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Adding a new caregiver to your support team can be a challenging transition, whether they're coming into your home, assisting your loved one who lives alone, or joining the care team in a memory care community. This transition can be particularly difficult for those caring for loved ones with Alzheimer's or dementia, as changes in routine can cause confusion and resistance.

If your loved one doesn't think they need help (and let's be honest, many don't), don't give up too quickly. Be patient and allow the process time to unfold. As one experienced caregiver shared, "He told the new caregiver for at least the first couple of weeks, every time she came, 'You need to go home.' She would just smile at him and say, 'Well, I'm not going home just yet.'"

Are you prepared for others to take care of your loved one? Do you have a care plan in place? Having a comprehensive care plan is one of the most important tools a caregiver can create — not just for emergencies, but for everyday peace of mind.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned the importance of creating a care plan for our loved one. We spoke with Amanda Lukoff, co-founder and CEO of Eleplan, about what a care plan is and how to create one that works for your unique situation.

Amanda's journey to creating Eleplan was deeply personal. Her brother Liam, who has autism, is her "North Star" and the inspiration behind her career path, including going to law school for special education law. Through observing her parents' caregiving journey with Liam, Amanda recognized the need to capture all the knowledge that lived in her parents' heads so that others could provide care that truly honored who Liam is as a person.

Connect with us and share your tips:

• Website: https://www.thecaregiversjourney.com
• Donate: https://give.cornerstone.cc/thecaregiversjourney
• Instagram: https://www.instagram.com/thecaregiversjourney/
• Facebook: https://www.facebook.com/TheCaregiversJourneys/
• Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/
• Email: [email protected], [email protected]

Additional Resources Mentioned

• Episode 32: Navigating The Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/
• Eleplan Website: https://www.eleplan.com/
• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Full Show Notes

https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementias

Takeaways

Tip 1: Start with the Basics

The first step in creating a care plan is to document the essential information that would allow someone to provide short-term care (even for just 30 minutes) while you step out.

This includes:

• Emergency contacts
• Medications and dosages
• High-level meal preferences
• Allergies
• Relevant medical conditions

Tip 2: Outline Preferences and Daily Routines

Beyond the basics, a good care plan should capture what makes your loved one unique—their preferences, personality traits, and daily routines.

Your care plan should include:

• Likes and dislikes
• Daily schedule and routines
• Bedtime and morning rituals
• Behavioral patterns
• Emotional triggers (both positive and negative)

Tip 3: Document What to Do in an Emergency

Crisis situations demand clear instructions. Your care plan should outline:

• What constitutes an emergency for your loved one
• When to call 911 vs. other resources
• Who to contact and in what order
• Special instructions for EMTs or ER staff
• Location of important medical documents

Tip 4: Collect Key Contacts and Documents

Gathering important documents in one accessible location is critical for seamless care. This includes:

• Insurance cards
• Healthcare directives
• Power of Attorney documents
• Guardianship forms
• Medical history and medication lists

Tip 5: Keep Everything Accessible and Current

A care plan is only effective if it's up-to-date and easily accessible. Amanda frames this with an important question:

"Do I have a system that is as dynamic as the needs of my loved one and the ever-changing piles of documents and information?"

Whether you're using a physical binder, shared digital documents, or a specialized platform like Eleplan, the key is having a system that makes updates easy and ensures the information is available whenever and wherever it's needed.

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