Empowerment

The Support I Wish I Had When Caring for My Mom with Dementia is Finally Available and Here’s How to Get it

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Looking back on my 12 year dementia caregiving journey, I often wonder how it could have been different had I had support.

The memories of being awake at 2 a.m. with no idea of what to do next, still shake me to my core. Sure, there are hotlines to call for support, but I never knew if the person on the other end truly understood dementia care or had any firsthand experience as a caregiver. And in the middle of the night, panicked and exhausted, who wants to explain their entire situation to a stranger? I certainly didn’t.

Today, 6.7 million Americans have been diagnosed with dementia—and countless more are living with it undiagnosed. Whether or not a doctor has officially delivered the diagnosis, caregivers often find themselves already deep into a complex journey—one they’re navigating largely on their own.”

Throughout my caregiving journey, I was never provided a guidebook, a training session, or even a roadmap for what was ahead. I was consistently reminded to take care of myself, but respite care, breaks, or meaningful rest? They all felt financially, logistically, and emotionally out of reach to me. Also, Medicare-provided resources applied exclusively to my mother, not to me as her caregiver.

From my work with thousands of family caregivers in the Daughterhood community, I know this is the reality you— the dementia caregiver—face time and time again. But now, something is beginning to shift.

I’ve recently learned that Medicare is testing a groundbreaking new program called GUIDE—Guiding an Improved Dementia Experience. The more I explored it, the more I realized how much it could have changed my life as a dementia caregiver – and how much I hope it can change yours. It’s a first of its kind: finally a program that’s designed to meet and address ALL of the needs associated with dementia caregiving – including 24/7 access to caregiver education, training, and support services, and up to $2,500 a year in respite care. That’s in addition to services and support provided to the actual person with dementia. And perhaps most importantly, it’s free.

As long as you meet the following criteria, you qualify: 

  • Your care partner has Medicare (but not Medicare Advantage)
  • They have a diagnosis of dementia (which will be provided or confirmed by GUIDE providers, so don’t worry if you don’t have one) 
  • They are not enrolled in hospice or they’re not living in a nursing home

Here at Daughterhood,  we believe that GUIDE gets the point – dementia caregiving is a full-time job that requires robust, holistic support of both the person living with dementia as well as you, their caregiver. FINALLY, here’s  an opportunity to calm the chaos of care coordination in dementia caregiving, and to get you the real, consistent support you deserve. 

We want to make it as easy as possible for you to access GUIDE’s services. So, we’ve gotten together with a partner, PocketRN, to bring you GUIDE information and resources. So whether you decide to enroll with PocketRN or a provider of your choosing, here’s how it will work: 

Your provider (PocketRN, or another of your choice) will start with a comprehensive assessment to confirm your eligibility (including a dementia diagnosis, if needed). From there, you’ll be paired with a dedicated care coordinator who will walk alongside you throughout your journey. They’ll connect you with personalized education, caregiver training, respite options, and 24/7 access to a care coordinator. If you choose PocketRN, it will be like having a nurse in your pocket, ready to answer questions any time, day or night. Best of all, it’s fully covered by Medicare, so neither you nor your loved one will pay a single cent. 

Should you prefer to research and work with a different provider from PocketRN, you can find a list of other GUIDE providers here. Our goal as Daughterhood is to connect everyone who needs and wants GUIDE’s support with a provider who can help.  

The GUIDE program officially launches on July 1st, and over the next four weeks, we’re committed to making sure you’re in-the-know and fully prepared. We’ll be sharing everything you need to know—how to sign up, what benefits are available, and how to make the most of this support. You’ll hear from us through our podcast and dedicated Circle discussions, where we’ll answer your questions and walk with you every step of the way.

You can also visit our new dementia caregiving page on the website for ongoing, easy access to everything related to the GUIDE program and our partnership with PocketRN. It’s your one-stop hub for resources, updates, and support. Caregiving shouldn’t be something you face alone—and now, with GUIDE, it doesn’t have to be.

If this program had existed when I was caring for my mother, I believe my experience would have been completely different. GUIDE has the potential to transform the experience of a caregiver—and, perhaps most importantly, to support your healing and well-being as a caregiver while you’re on this journey, and long after the caregiving journey ends. You matter just as much as the care you give. Don’t forget that.

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