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

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: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org

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

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