Advertise on podcast: The Caregiver's Journey

“An accurate early dementia diagnosis is essential. It can make a significant difference in how families navigate the diagnosis.” Esther Kane, MSN, RN Your loved one has been diagnosed with dementia… but do you ever wonder if they’ve been diagnosed with the correct type? Do you find yourself thinking: “This diagnosis doesn’t quite fit what I’m seeing.” You’re not alone. Getting the correct diagnosis opens the right doors to support, care, and community that you might not have known existed. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned firsthand that not all dementias are the same. Understanding the specific type of dementia your loved one has ensures they’re receiving the correct medical care and helps you connect with the education, targeted support groups, and research opportunities tailored to your loved one’s specific needs. In this post, we’re sharing insights from Esther Kane, a registered nurse and the Director of Support and Education for the Association for Frontotemporal Degeneration (AFTD). As a director of nursing in multiple memory care facilities, Esther’s entire career has been supporting and caring for individuals living with all types of dementia. In her role at AFTD, Esther works to advance early, accurate FTD diagnoses in order to improve the quality of life for those impacted by the disease. We’re exploring five essential tips for ensuring your loved one receives the correct dementia diagnosis and how to leverage this knowledge for better care. Full Show Notes https://thecaregiversjourney.org/54-why-the-right-dementia-diagnosis-matters-five-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Alzheimer’s Association 10 signs of dementia: https://www.alz.org/alzheimers-dementia/10_signsNavigating Dementia Caregiving Roadmap guide: https://thecaregiversjourney.org/guides/Association for Frontotemporal Dementia (AFTD): https://www.theaftd.org/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Learn More About Dementia and Push to Dig Deeper Tip 2: Find Your Specific Diagnosis Community, Resources, and Support Tip 3: Monitor Disease Progression and Prepare Tip 4: Investigate Clinical Trials Tip 5: Understand the Genetic Risk Associated with This Diagnosis Read More in This Blog https://sueryansolutions.medium.com/53-why-the-right-dementia-diagnosis-matters-five-essential-tips-alzheimers-and-other-dementias-b6afe1179898?postPublishedType=repub

"Dementia is not just a medical journey, but it's a financial and emotional one." – Devon Banning, CFP Are you avoiding the financial conversation with your loved one because it feels uncomfortable or overwhelming? Do you find yourself wondering how you'll afford care as your loved one's needs increase? Are you concerned about making the right financial decisions during this challenging time? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we know that money is often the last conversation we want to have, but it's inevitable. We have to have it. Today, we're sharing five essential tips for navigating the financial aspects of dementia caregiving with Devon Banning, a Certified Financial Planner with Moran Wealth Management. Devon has more than 15 years of experience across a range of roles in the financial industry, and he brings invaluable depth of experience with dementia family caregiving. He's spent the majority of his career managing financial lives for individuals and families, many of whom were suddenly thrust into the caregiving role due to dementia. Here's what makes this conversation easier: it'll be much more manageable when we respect our loved ones' dignity, independence, and their wishes throughout all of our conversations. Today is about helping you learn options for taking your next step—options that are going to make you feel more confident without needing to have all the answers at one time. This episode supports step three of our Navigating Dementia Caregiving Roadmap Guide: understand the financial situation. If you've been putting this conversation off, you're definitely not alone. This is an area many caregivers hesitate to step into. It's deeply personal, and it can feel intimidating—especially if we wish we'd addressed it 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 https://thecaregiversjourney.org/53-the-dementia-care-financial-conversation-five-essential-tips-alzheimers-and-other-dementias-2/ Additional Resources Mentioned Moran Wealth Management https://moranwm.com/ Disclaimer:This podcast is for educational and informational purposes only and does not constitute investment, legal, or tax advice. The views expressed are those of the participants as of the date recorded and may change without notice. Nothing discussed should be considered a recommendation or solicitation to buy or sell any security or to engage in any particular investment strategy. Listeners should consult their own financial, legal, or tax professionals before making any financial decisions. Moran Wealth Management is an SEC-registered investment adviser. Registration does not imply a certain level of skill or training. Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Get the Financial Conversation Started Use these 8 steps to guide the conversation Understand the different stages of financial considerations Understand The Financial Position of Your Loved One Consider Leveraging a Financial Planning Expert Read More in This Blog https://medium.com/@sueryansolutions/financial-planning-for-dementia-caregiving-five-essential-tips-edf00b98be82

Are you prepared if a major storm threatens your area? Do you know whether to evacuate or shelter in place with your loved one who has dementia? Have you created a communication plan that accounts for potential power outages and cell tower failures? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how storm season brings critical decisions that require advance planning. Whether your loved one lives at home or in a care community, preparing for storms demands special considerations for people living with dementia. Recently, we spoke with Celeste Lynch, Executive Director at Moorings Park Grand Lake in Naples, Florida. With nearly 40 years of experience in senior living leadership, emergency planning, and resident safety, Celeste shared invaluable insights on storm preparedness from both the care community and at-home perspectives. If you're following along with the Navigating Dementia Caregiving Roadmap Guide, today's topic aligns with Step 14: Create a Care Plan and Family Emergency Plan. Let's explore four essential tips for weathering storms safely with your loved one who has dementia. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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/52-preparing-for-stormy-weather-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Navigating Dementia Caregiving Roadmap guide: https://thecaregiversjourney.org/guides/Moorings Park community: https://www.mooringspark.org/ FEMA assistance programs: https://www.fema.gov/DisasterAssistance.gov: https://www.disasterassistance.gov/Relief organizations such as the Red Cross: https://www.redcross.org/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways We shared 4 tips: Preparing Ahead of Time Decide whether you will shelter in place or evacuateStrengthen Your Communication Plan Before, During, and After the Storm Post storm, safely get them back in their routine Read More in This Blog here

"The difference between TV as comfort and TV as chaos isn't the screen—it's understanding how the changing brain experiences what's on it." Do you rely on television to help occupy your loved one's time? Does your care receiver seem agitated or anxious when the TV is on? Have you noticed them leaving the room when a show is playing or struggling to follow programs they once enjoyed? 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 what soothes us as caregivers can actually cause distress for people living with dementia. In this episode, we spoke with Allyson Schrier, co-founder and president of Zinnia TV and former caregiver for her husband with frontotemporal dementia, about why regular TV can be problematic and what we can do about it. Let's explore four essential tips for managing TV time effectively. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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 Zinnia TV https://www.zinniatv.comSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Be Thoughtful About What’s On TV The answer isn’t to take TV away completely. We need to be thoughtful about what we put on the TV and pay close attention to how our loved ones respond. Tip 2: Target Something That Creates Curiosity Without Agitation The goal is to find programming that engages without overstimulating or causing your loved one to fall asleep (because daytime sleeping can lead to nighttime wakefulness). Tip 3: Leverage Simulated Presence Therapy The innovative approach of simulated presence therapy takes advantage of how people with dementia can experience confusion between what’s on screen and what’s actually happening — and uses it to benefit them. What is simulated presence therapy? Research has shown that when someone will only take medication or follow instructions from a specific person (like a daughter or doctor), showing them a video of that person giving the instruction can work just as effectively as having the person physically present. Tip 4: Create Engaging Alternatives On Your Own Beyond television, there are creative ways to provide visual engagement that work better with how the dementia brain processes information. Observe and Adjust Managing the television experience for someone with dementia isn’t about finding one perfect solution. What works today may not work next month as the disease progresses, and that’s reasonable. The process is about observing how your loved one responds and adjusting accordingly. The key is understanding the changing brain experiences television very differently than we do. Through being thoughtful about what’s on the screen, targeting content that engages without overwhelming, leveraging simulated presence therapy, and creating our own alternatives, we can turn TV time from a potential source of agitation into a positive opportunity for comfort and connection. Read More in This Blog here

Are you struggling to pull your family together to create a working support system for someone living with dementia? Do you find family members disagreeing on what needs to be done or how to help? You're not alone, and there's a path 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 that transforming family dynamics into effective teamwork is one of the most challenging—yet most rewarding—aspects of the caregiving journey. In this episode, we spoke with Dr. Barry Jacobs, a clinical psychologist and family therapist who brings both professional expertise and personal caregiving experience to this conversation. Barry cared for his mother with vascular dementia and his stepfather with Alzheimer's disease for seven years, and he co-authored the AARP Caregiver Answer Book with his wife, psychologist Julia Mayer. This content aligns with Step 8 of our Navigating Dementia Caregiving Roadmap: Start Planning for the Next Stage of Care, particularly when building your personal support network of family and friends. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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/50-family-dynamics-in-caregiving-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Barry’s website www.caregiveranswerbook.comBuy the Caregiver Answer Book on Amazon https://amzn.to/4i9V9ZLNavigating Dementia Caregiving Roadmap guide https://thecaregiversjourney.org/guides/#guidesSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Transforming your family into an effective caregiving team isn’t easy. It’s worth the effort — not just for your loved one with dementia — but for every member of your family. These four tips provide a framework: Create consensus (everyone on the same page).Define an ongoing format for decision making (regular meetings with clear rhythm).Build a family caregiving plan (who does what and when).Plan to deal with conflict (don’t let disagreements become disrespectful).

Do you know what you need to do immediately after your loved one passes? Many caregivers don't. Are you worried about missing important tasks or feeling overwhelmed by the sheer volume of administrative, financial, and legal responsibilities? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've navigated the challenging process of handling death-related responsibilities firsthand. Between us, we've experienced the loss of multiple loved ones and learned valuable lessons about what needs to be done and when. 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 If you are following along with our 20 step Navigating Dementia Caregiving Roadmap guide this is part of Step 20. This is the first guide listed on our guides page. There are many things that can be done ahead of time. We covered these in podcast episode 30 - End of life preplanning and blog as well as in the matching worksheet you can find on our website in the guides section called ‘End of Life Service Worksheet’. Click here to get to the Guides page, scroll down to find the sheet. Tip 1: Prioritize these things immediately after death1. Tip 2: Move to this list within the first few days and weeks Tip 3: Over the next few weeks and months - manage their estate Tip 4: Focus on the things to prioritize once the estate has been closed

Are you feeling overwhelmed trying to care for aging parents while raising children? Do you find yourself stretched thin between different generations, each with their own unique needs? My name is Sue Ryan. As a caregiver for loved ones with Alzheimer’s and other types of dementia, I understand the unique challenges faced by those in the sandwich generations. I recently spoke with Christy Byrne Yates, a licensed educational psychologist and author of “Building a Legacy of Love: Thriving in the Sandwich Generation.” Christy has personally navigated the challenges of caring for aging parents while raising her own children, and she brings both professional expertise and lived experience to help families thrive during this demanding season of life. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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 Chirstyyates.com - https://www.christyyates.com/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: C — Choose Your Role as a Caregiver The first step in successfully navigating the sandwich generation is making a conscious choice to embrace your caregiving role. Many people say “I didn’t choose this.” or “I had no choice.” We always have a choice. Even not making a choice is still a choice. Tip 2: A — Address the ‘Elephants’ in the Room Successful sandwich generation caregiving requires having difficult conversations early and often. These are the ‘elephants’ dancing in every family room that everyone sees — but no one wants to discuss. Tip 3: R — Recharge Through Ruthless Self-Care Recharging takes on critical importance when you’re caring for multiple generations. Self-care isn’t selfish — it’s essential for everyone you’re caring for. Tip 4: E — Enlist Your Support Team You’re not meant to journey alone, and this is especially true for sandwich generation caregivers who face multiple competing demands. Building a comprehensive support team is essential for sustainable caregiving. Tip 5: S — Surrender Control and Embrace Grace Perhaps the most challenging aspect of sandwich generation caregiving is accepting that you cannot control everything, even though you desperately want to. If everyone could just do things your way, life would be so much easier — but that’s not reality. Read More in This Blog here

Have you noticed yourself feeling sad when your loved one can't remember their phone number? Do you find yourself withdrawing from friends or losing patience more easily? These feelings might be grief—and you may not even realize it's happening. 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 grief doesn't only come after our loved one passes away. It's present throughout our entire caregiving journey, from the moment of diagnosis through each individual change along the way. The good news is that understanding grief—recognizing it, honoring it, and learning to move through it without getting stuck—can transform how we experience our caregiving journey. Today we're sharing six essential tips to help you navigate grief with grace and compassion. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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/47-navigating-grief-throughout-caregiving-six-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Guide: Navigating Dementia Caregiving Roadmap: https://thecaregiversjourney.org/guides/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Read More in This Blog here

Have you reached the point where you're now fully responsible for your loved one's care and safety? Do you find yourself guiding others or managing all aspects of their daily needs? You've entered what we call "later on"—the final stage of the caregiving journey, and while some aspects may feel more manageable, new challenges and emotions emerge that require specific attention and planning. This final phase completes our comprehensive 20-step roadmap for dementia caregiving, covering the essential steps when you've moved beyond the messy middle into full caregiving responsibility. Connect with us and share your tips: Website: https://thecaregiversjourney.org/ 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] Guide: Navigating Dementia Caregiving Roadmap https://thecaregiversjourney.org/guides/ Donate: https://give.cornerstone.cc/thecaregiversjourney Full show notes Additional Resources Mentioned Later On - You are now managing all aspects of their care 18. Plan for their End of Life Service:   You may have done this with your loved one just after their diagnosis. If not, do this without them now:26 minute TCJ podcast: 30. End of Life Service PreplanningTCJ blog: 30. End of Life Service PreplanningLeverage this End of Life Planning Worksheet.  19. Call in hospice. If you are not working with palliative care or a US Medicare GUIDE program organization (both of these are able to tell you when it’s time to call in hospice)Find a hospice organization. Get a doctor's referral. Schedule an initial evaluation. It’s almost never too early to get the initial evaluation, so don’t wait.Search ‘hospice’ + ‘your country’ - or in the US - ‘your state’. Scroll down until you get below the sponsored links where it says ‘Places’:Click on ‘More places’ to get a list with a map.  Notice rating stars and those located around your area.Schedule an initial consultation with two so you can compare.Educate yourself on when to call in hospice:26 minute TCJ podcast: 29. When To Call In HospiceTCJ blog: 29. When To Call In Hospice. 20. Continue your self-care. Learn about Anticipatory Grief.  Read this AARP article:How To Manage Mourning a Loss Before It Happens.Honor your grief, be compassionate with yourself, reach out for support:Each of us navigates the loss of our loved one in our own time and way.It’s reasonable when your caregiving journey ends you may feel any or all of:A sense of relief because your journey has ended and your loved one is no longer suffering, Guilty at the same time because you feel relieved.A loss of your own identity, from prioritizing your loved one for so long.Not sure what to do next.If you feel lost, reach out to your family, support group, faith community, friends, professionals. Most importantly - reach out! 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. 

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/thecaregiversjourneyInstagram: 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 AloneTCJ blog: 6. Home Alone.Medication - Understand strategies to safely manage medication:20 minute TCJ podcast: 20. Medication ManagementTCJ 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 SafetyWandering - 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-CareTCJ 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 Incontinence21 minute TCJ podcast: 14. Bathing and DressingTCJ blog: 14. Bathing and Dressing21 minute TCJ podcast: 15. Personal Care e.g. brushing teeth, trimming hair TCJ blog: 15. Personal Care21 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. DelusionsTCJ 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/thecaregiversjourneyInstagram: 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/44-navigating-dementia-caregiving-roadmap-in-the-beginning-steps-7-10-alzheimers-and-other-dementias/ Additional Resources Mentioned Navigating Dementia Caregiving Roadmap Guide 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 NetworkTCJ 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 KeysTCJ 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. 

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/thecaregiversjourneyInstagram: 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 LinkSupport 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 specialistsHospice 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/thecaregiversjourneyInstagram: 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 firstExamples of supportive company policiesDisclose early in the journeyPlan your conversationFrame it collaborativelyDocument everything Tip 2: Build Flexibility Explore flexibility options in your organizationPropose pilot arrangementsConsider team involvementCreate backup plansLeverage technologyConsider career flexibility Tip 3: Leverage Your Resources Connect with colleagues who are also caregiversExplore Employee Assistance Programs (EAPs)Look for community resourcesTake things off your plate Tip 4: Plan for the Unplanned Understand your benefits and protectionsCreate a caregiving budgetExplore financial resourcesBuild an emergency fundPrepare for career transitions Read More in This Blog https://sueryansolutions.medium.com/40-building-your-personal-caregiving-support-network-9f9639e9ae87