Have you moved beyond the initial steps of your caregiving journey and now find yourself needing to take more control while your loved one still believes they can do most things independently? Are you noticing that simple tasks are becoming increasingly challenging for them, yet they resist your help? You’re not alone! You’ve entered what we call the “messy middle” stage of your caregiving journey.

We created for you the comprehensive, 20-step caregiving journey roadmap guide, Navigating Dementia Caregiving Roadmap

Connect with us and share your tips:

• Website: https://thecaregiversjourney.org/
• 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]

Full Show Notes

Additional Resources Mentioned

Messy Middle

First Steps - You recognize it’s time to assert more control 

11. Focus on safety. 

• Listen to these podcasts or read these blogs.
• Home Alone - Hear about the deal breakers for living home alone:
• 21 minute TCJ podcast: 6. Home Alone
• TCJ blog: 6. Home Alone.
• Medication - Understand strategies to safely manage medication:
• 20 minute TCJ podcast: 20. Medication Management
• TCJ blog: 20. Medication Management.
• Home Safety - Find approaches to the basics of home safety:
• 25 minute TCJ podcast: 7. Home Safety 
• TCJ blog: 7. Home Safety
• Wandering - Learn ways to manage three types of wandering: outside, inside and during the night.
• 20 minute TCJ podcast: 4. Wandering 
• TCJ blog: 4. Wandering.

12. Continue to prioritize your self-care. 

• Understand how to approach the realities of self-care:
• 23 minute TCJ podcast: 27. The Realities of Caregiver Self-Care
• TCJ blog: 27. The Reality of Caregiver Self-Care.

13. Educate yourself on activities of daily living (ADLs).

• Prepare for changes in your loved ones ability to manage their ADLs.
• Listen to these podcasts or read these blogs on activities of daily living:
• 26 minute TCJ podcast: 9. Preparing for Incontinence 
• TCJ blog: 9. Preparing for Incontinence
• 21 minute TCJ podcast: 14. Bathing and Dressing
• TCJ blog: 14. Bathing and Dressing
• 21 minute TCJ podcast: 15. Personal Care e.g. brushing teeth, trimming hair 
• TCJ blog: 15. Personal Care
• 21 minute TCJ podcast: 16. Eating and Drinking 
• TCJ blog: 16. Eating and Drinking.

14.Create a Care Plan - at minimum a Family Emergency Plan.

• 25 minute TCJ podcast: 33. How to Create a Care Plan 
• TCJ blog: 33. Creating a Care Plan.

Messy Middle - Continued

Second Steps - It’s time for more support

15. Start or increase leveraging dementia/adult day programs. 

• Community resource finder: 
• Select Community Services and choose Adult Day Centers for your search.

16. Start thinking about professional help.

• Educate yourself: 
• Evaluate continuing care communities (even if you never plan to use one) just in case.
• 33 minute TCJ podcast: 28. Home and Community Living Options 
• TCJ blog: 28. Home and Community Living Options.
• Understand the types of paid caregivers:
• 26 minute TCJ podcast: 32. Hiring a Paid Caregiver 
• TCJ blog: 32. Hiring a Paid Caregiver.
• Find an organization to help. Search online: ‘Senior Care Advisor’ + ‘your area’.
• Look for options yourself. Go to the Community Resource Finder sponsored by the Alzheimer’s Association and AARP.

17. Continue your education.

• Take the Savvy Caregiver Advanced training (this can be taken in-person or virtually).
• Delusions:
• 38 minute TCJ podcast: 23. Delusions
• TCJ blog: 23. Delusions.
• Incontinence:
• 26 minute TCJ podcast: 10. Incontinence Begins 
• TCJ blog: 10. Incontinence Begins.

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

Have you completed the first six essential steps of the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage? Are ready to take on more? Do you find yourself wanting to learn faster and more easily than trying to figure everything out on your own? If you answered ‘Yes’, you’re in the right place for the next phase of the dementia “In the Beginning” journey.

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 building knowledge, and preparing for progression, are crucial for sustainable caregiving. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about our comprehensive 20-step caregiving journey roadmap guide: Navigating Dementia Caregiving Roadmap. In this podcast, we’re sharing steps 7–10.

Connect with us and share your tips:

• Website: https://thecaregiversjourney.org/
• 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]

Full Show Notes

Additional Resources Mentioned

In the Beginning - continued

Next Steps - You are ready for more 

7. Continue your education:

• Take the Savvy Caregiver course in person or online.
• Read this magazine:  
• Mayo Clinic Living with dementia: A guide to caregiving and support. 
• Find and take a virtual dementia tour near you. In the United States, in your search engine, type ‘virtual dementia tour’ +  ’your state’. For example: ‘virtual dementia tour Florida’ or, outside the US, replace your state with your country.

8. Start planning for the next stage of care.

• Build your personal support network:
• 21 minute TCJ podcast: 40. Create Your Personal Support Network
• TCJ blog: 40. Create Your Personal Support Network.
• Find and try a memory cafe (Caregivers and care receivers go together).
• Investigate dementia day centers (also known as adult day centers that include dementia care programs) for your care receiver. Community resource finder: 
• Select Community Services and choose Adult Day Centers for your search.
• Ask your loved one’s medical team for a home safety assessment.
• The goal is to have someone evaluate your home for safety and dementia care needs. 
• This is usually available through palliative care, GUIDE program, or an order from a physician.
• You can get a free assessment from social services with this order, or you can pay for an independent assessment from a private organization.

9. Investigate your local government community support: 

• In the US, contact your local Area Agency on Aging. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.
• Call and set up a screening for eligibility:
• They will point you to any free government services where you are eligible. 
• Be sure to find out if you are eligible to get paid to be a caregiver. 

10. Evaluate driving risks. 

• Some US states have specific requirements for individuals with dementia to report their diagnosis and potentially undergo driving evaluations. 
• Listen to this podcast or read this blog:
• 21 minute TCJ podcast: 5. Taking Away the Keys
• TCJ blog: 5. Taking Away the Keys. 

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

Takeaways

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning - Your loved one receives a diagnosis. 

2. The Messy Middle - You begin asserting control; this is when it gets messy!

3. Later On - You are managing all aspects of their care. 

Read More in This Blog here

Have you ever felt overwhelmed because you don’t know what information you need, can’t find reliable sources, or feel frustrated by too much conflicting advice?

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned having a step-by-step roadmap is crucial for navigating the beginning of your caregiving journey. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage. This podcast is bringing the first six essential steps to take immediately after diagnosis.

Connect with us and share your tips:

Donate: https://give.cornerstone.cc/thecaregiversjourney

Instagram: https://www.instagram.com/thecaregiversjourney/

Facebook: https://www.facebook.com/thecaregiversjourneys/

Full Show Notes Here

In the Beginning - First Steps - Right after the diagnosis

1. Choose a palliative care organization.

This will likely also serve as your hospice organization later in your journey.

In your search engine, type ‘Palliative Care’ + ‘the name of your country’ or, in the US ‘the name of your state’.

Schedule an initial consultation with more than one so you can compare.

Educate yourself on what palliative care is:

27 minute The Caregiver’s Journey (TCJ) podcast: 42. When To Call In Palliative Care

2. Create an Advance Care Plan.

Get your legal documents in order and do some initial end of life preplanning with your loved ones input:

Contact your attorney or an elder law attorney NAELA.org.

Listen to this podcast or read this blog on elder law attorneys:

32 minute TCJ podcast: 31. Elder Law Attorneys

Alzheimer’s Association legal documents overview:

Leverage this End of Life Planning Worksheet.

3. Understand the financial situation.

Work with a financial advisor - especially those who focus on seniors. Elder law attorneys can also advise in this area.

Alzheimer’s Association resources overview of financial planning

4. Find support groups.

First and foremost for you. If possible, find a support group you can attend in person:

The Alzheimer's Association support group finder has support groups for a variety of types of dementia.

If your loved one is interested a support group:

Dementia minds has online groups for people living with dementia.

Many local senior centers have support groups for your loved one to increase socialization:

In the US, go to your ‘countyname’.gov website and search for a senior center.

The Alzheimer’s Association 24/7 helpline in the US: 1.800.272.3900.

5. Educate yourself on early caregiving journey topics.

Listen to these two podcasts or read these two blogs.

Memory Loss:

29 minute TCJ podcast: 2. Memory Loss

Communication:

20 minute TCJ podcast: 3. Communication – in the Beginning

6. Investigate the US Medicare GUIDE program.

Listen to this podcast or read this blog:

23 minute TCJ podcast: 39. Is the Medicare GUIDE program for you

Understand if your loved one may be eligible:

https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs.

If you think you might be eligible, find a US Medicare GUIDE program provider near you.

There may be several who cover your zip code so explore options.

Go here to find a GUIDE program:

Enter your state.

Under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’.

Click ‘Display selected’.

You can use the plus and minus signs in the upper right corner to zoom in closer to your area.

When you find the location you want, click on the blue dot and detailed contact information will show.

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning - Your loved one receives a diagnosis.

2. The Messy Middle - You begin asserting control; this is when it gets messy!

3. Later On - You are managing all aspects of their care.

Full blog here

Are you feeling overwhelmed by the complexity of dementia care? Do you find yourself wishing you had more support navigating medical decisions and planning for the future? You’re not alone - and there’s specialized help available that many caregivers don’t fully understand.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we both wish we had understood what palliative care is and how to leverage it earlier in our journeys. Unfortunately, when palliative care was first explained to us, it was explained incorrectly, and neither of us took advantage of all the great things palliative care has to offer.

We recently spoke with Dawn Kolderman, a registered nurse and Senior Clinical Director of Palliative Care Services at Avow, who has more than 30 years of nursing experience with the last 20 focused on palliative and hospice care. Dawn shared invaluable insights about palliative care that we wish we had known sooner.

Connect with us and share your tips:

• Website: https://thecaregiversjourney.org/
• 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]

Full Show Notes

Additional Resources Mentioned

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

Takeaways

Tip 1: Understand What Palliative Care Actually Is

The first step is clearing up common misconceptions about palliative care. 

Palliative care is a holistic approach to a life-limiting disease. This includes dementia — which is indeed a life-limiting disease. 

The key difference between palliative care and hospice care:

• Palliative care patients are at the beginning of their journey and are still seeking aggressive, curative treatment while seeing all their providers and specialists
• Hospice care patients are generally at the end of their journey, no longer seeking aggressive treatment, and focusing on comfort care.

Palliative care is an additional supportive layer of care that works collaboratively with all your existing medical providers. Most importantly, palliative care focuses heavily on the caregiver.

Tip 2: Call Palliative Care In — Here’s How

Many caregivers don’t realize how accessible palliative care is or when to call it in. The answer is simple: the earlier, the better.

Tip 3: Understand the Goals of Palliative Care

Palliative care has specific, comprehensive goals that address both immediate and long-term needs.

Primary goals include:

Relieving physical symptoms first

Supporting the caregiver and family

Education and collaboration

Advanced care planning (ACP). This crucial component involves sitting down with the patient, caregiver, and family to discuss important decisions while your loved one can still participate in these conversations.

Tip 4: What Else You Need to Know About Palliative Care

There are several important aspects of palliative care that many people don’t realize.

Your loved one won’t look sick. The goal is to help them live their life fully.

Early intervention builds stronger relationships.

The nurse navigator’s role is specifically to connect you with community resources you might not know about. 

Read More in This Blog here

Have you ever thought, "I wish I knew how to have a constructive conversation with my manager about how to align my work responsibilities and my caregiving responsibilities?" Today we're sharing strategies to help working family caregivers thrive at both work and at home. We're sharing four tips.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how caregivers often feel torn between their responsibilities at home and their professional responsibilities, which they're trying desperately to fulfill, often without support.

Connect with us and share your tips:

• Website: https://thecaregiversjourney.org/
• 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]

Full Show Notes

https://thecaregiversjourney.org/41-aligning-work-and-caregiving-responsibilities-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

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

Takeaways

Tip 1: Self-Identify and Strategically Disclose

• Assess your company culture first
• Examples of supportive company policies
• Disclose early in the journey
• Plan your conversation
• Frame it collaboratively
• Document everything

Tip 2: Build Flexibility

• Explore flexibility options in your organization
• Propose pilot arrangements
• Consider team involvement
• Create backup plans
• Leverage technology
• Consider career flexibility

Tip 3: Leverage Your Resources

• Connect with colleagues who are also caregivers
• Explore Employee Assistance Programs (EAPs)
• Look for community resources
• Take things off your plate

Tip 4: Plan for the Unplanned

• Understand your benefits and protections
• Create a caregiving budget
• Explore financial resources
• Build an emergency fund
• Prepare for career transitions

Read More in This Blog

https://sueryansolutions.medium.com/40-building-your-personal-caregiving-support-network-9f9639e9ae87

“In the marathon that is caregiving, the difference between exhaustion and endurance isn’t willpower, it’s the strength of the support network we build around us.” Sue Ryan

Are you feeling overwhelmed by the responsibilities of caregiving? Do you find yourself thinking, “I don’t have time to get everything done.” or “I should be able to do this myself.”? You’re not alone, and there’s a better way forward.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned building a strong personal support network is crucial for sustainable caregiving. Studies show that dementia family caregivers face overwhelming emotional challenges.

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]

Full Show Notes: https://thecaregiversjourney.org/40-create-your-personal-support-network-five-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

• 27. The Realities of Caregiver Self-Care https://thecaregiversjourney.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/
• 32. Navigating the Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/
• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Assess Your Needs and Make a List

Ask yourself:

• Do I have time to get everything done that needs to be done?
• Am I physically strong enough to handle all caregiving tasks?
• Do I find myself losing patience or empathy?
• Is my loved one struggling with activities of daily living that I can't manage alone?

If you answered yes to any of these questions, it's time to ask for help. 

Tip 2: Create a List of Who Can Help and What They Can Do

• Think about all the people who have offered to help or who might be willing to help. 
• Map your list of potential helpers to your list of needs. If multiple people can help with a particular task, list them all—it's better not to rely on just one person.

Tip 3: How to Effectively Ask for Help

• Recognize that some people want to help your care receiver, while others want to help you. 
• Be specific and direct about what you need and why you need it.
• Remember that the people on your list have likely already offered to help or have shown willingness to support you.
• Adapt your approach based on the person you're asking. 

Tip 4: When People Offer to Help, Say "Yes"

Avoid these common traps:

• "It would be easier just to do it myself."
• "No one can care for my loved one like I can."
• "I should be able to do this myself."
• "I feel guilty—they have their own busy lives."

Tip 5: Maintain Your Support Network and Adjust as Things Change

• Encouraging open communication with your support team members
• Being proactive about finding new support team members when needed
• Checking in regularly with your helpers to keep them informed and engaged
• Watching for signs of burnout in your helpers—they may experience caregiver fatigue too
• Addressing inflection points in your loved one's care needs

Read More in This Blog https://sueryansolutions.medium.com/36-building-your-personal-caregiving-support-network-9f9639e9ae87

Is the Medicare GUIDE Program for you? Today Nancy and I are sharing insights from Amy Imes of Emory's Integrated Memory Care about the new Medicare Program GUIDE. We're going to help you understand what it is and how to know if you can leverage it. We're sharing three tips.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we are so excited to share this information with you. This is an awesome opportunity to learn about the US Medicare GUIDE Program. With big announcements happening on July 1, 2025, we're excited to give you an overview so you can understand how you might participate in the GUIDE program.

Let us introduce you to Amy. Amy Imes is a gerontological nurse practitioner who is a trusted expert in geriatrics, demonstrating a deep understanding of the unique healthcare needs of the aging population. Throughout her career, Amy has played a pivotal role in building care models—that's important to the GUIDE program—and developing teams that yield superior outcomes. In addition to her clinical work, she is a member of the team at Emory's Integrated Memory Care, which is a nurse practitioner-led primary care practice for patients living with dementia. She's also the program lead for the Medicare GUIDE Program at Emory Healthcare.

GUIDE stands for Guiding an Improved Dementia Experience. It is a US Medicare pilot program that aims to provide better support and resources for persons living with dementia and their caregivers. Which is awesome.

You should know that it's a pilot program. Please let's all support it because we need to prove that this pilot program which focuses on helping dementia caregivers actually works so that this can become a standard part of Medicare and can also be expanded globally. It would be ideal for the US to prove it's worth so that we can help other countries take advantage of these kinds of support because they're watching and they're aware of it.

This is a groundbreaking program that is being offered around the country. So definitely we want to show up and show out as people tend to say sometimes. As of today, July 1st, there are approximately 390 programs across the country that have been vetted by Medicare to provide this program, and so it is really going to have an impact for persons living with dementia.

Full Show Notes

https://thecaregiversjourney.org/39-is-the-medicare-guide-program-for-you-three-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

To find a guide program near you: Go to this CMS website page and put in your state and under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’

Then click ‘Display selected’

You can use the plus and minus signs in the upper right corner to zoom in closer to your area and find the program closest to you.

There may be several who cover your zip code so explore options

Emory Integrated Memory Care: https://www.emoryhealthcare.org/centers-programs/integrated-memory-care-clinic

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

Takeaways

What the Medicare GUIDE Program Offers

One-on-one support and coaching by dementia prevention providers

Care navigation through an often difficult and chaotic healthcare system

Education and training resources for caregivers

Respite care

Tip 1: Understand Your Eligibility

Tip 2: How to Find a GUIDE Program Near Me

Tip 3: How to Integrate GUIDE with Your Existing Medical Team

About Emory's Integrated Memory Care GUIDE Program

For those in the Atlanta area, Emory's Integrated Memory Care is led by nurse practitioners who are all dementia specialists and geriatric specialists. They bring everything under one umbrella with geriatric psych, licensed social workers, and RNs on their team. This eliminates doctor hopping and multiple visits.

Read More in This Blog here

Do you wish you could get a good night’s sleep? We do too!

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we appreciate the insights Dr. Glenna Brewster, PhD, RN, FNP-BC, Assistant Professor at Nell Hodgson Woodruff School of Nursing at Emory University, shared for all of us about her sleep study titled SLEEPMATE, and how we can all create good sleep habits.

Dr. Glenna Brewster’s background is impressive, and her passion for good sleep is inspiring! In addition to her responsibilities as a professor, she is a nurse scientist, family nurse practitioner, and she leads the Emory University Mind at Rest research team, which develops and tests practical, evidence-based programs to reduce sleep problems and improve health outcomes for people living with memory loss or dementia and their caregivers.

Good sleep isn’t just for your care receiver, this is for you too!

According to Dr. Brewster:

Sleep problems, especially if you’re a caregiver or person living with cognitive impairment, are significant. You might have a hard time falling asleep, wake up multiple times during the night, or notice that as the disease progresses there is daytime sleepiness. Sleep disturbances are prevalent both in care partners or caregivers and people living with cognitive impairment.

Dr. Brewster has developed the SLEEPMATE study for caregivers and people living with cognitive impairment and types of dementia. It’s a six-week virtual intervention where you participate together. The study examines whether the intervention is feasible, acceptable, and if it improves sleep outcomes. At the end of this blog post is the link you can use if you’re interested in participating in this virtual study.

This topic is incredibly valuable for us as caregivers. We’ve learned the need for quality sleep — and what not having it is like. We’ve also learned that we’re often so focused on quality sleep for our care receiver, we don’t prioritize our own sleep as caregivers!

One important take-away from Dr. Brewster for caregivers it’s so easy not to consider — or to lose sight of:

Your quality of sleep is every bit as important — and sometimes even more — important than your care receiver’s.

Full Show Notes here

Additional Resources Mentioned

• Dr. Glenna Brewster, assistant professor, shares her innovative study designed to improve the sleep outcomes of persons living with preclinical and early-stage dementia and their caregivers. Brewster is also founder of the Mind at Rest research lab.
• For more information about joining this study, visit mindatrest.org/contact/.
• Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

Takeaways

Tip 1: Practice Good Sleep Hygiene

Tip 2: Limit Daytime Naps

Tip 3: Make Your Bedroom Like a Cave

Tip 4: Schedule Worry Time Earlier in the Day

Tip 5: Keep Your Bedroom for the Three S's

About the SLEEP-MATE Study

Dr. Brewster's study is recruiting pairs. The person who is receiving the care doesn't have to be diagnosed with dementia, just have a complaint or an experience of cognitive changes. Caregivers or care partners—different people want to be called different things based on where in the dementia journey they are—both people participating, both having some type of sleep disturbance or sleep problems.

That could be difficulty falling asleep, difficulty staying asleep (meaning that you fall asleep and then you wake up, and when you wake up, you have a hard time falling back asleep), or significant daytime sleepiness or some other type of impairment during the day. It's for people who are living within the contiguous US. Each of you gets an honorarium for participating as a thank you for your time and investment in participating in the study.

If you have any questions or want to find out more about the study, please reach out at 404-712-9164 or you can check out their lab's website at www.mindatrest.org.

"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

Read More in This Blog here

“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