"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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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.'"