What Alzheimer’s and dementia caregivers really need but rarely get

Lolita Tramel, DNP

Submitted photo

A good starting point is the Alzheimer’s Association website, which offers educational materials and updates on the latest research. They also offer a 24-hour helpline. Here in the Valley, the Desert Southwest Chapter provides early-stage programs, education and support groups to help connect caregivers with each other. I always encourage families to explore this resource as soon as a diagnosis is made.”

Opinion

Tramel: From daughter to caregiver — my journey with Alzheimer’s and the lessons learned

We often ask caregivers to do everything — manage medication, finances, emotions and full-time jobs — but we rarely ask what they need. As someone who’s lived it and now serves others, I can tell you their needs are urgent.

When my mother was diagnosed with Alzheimer’s, I didn’t realize I was stepping into a long, complicated beginning. It was a role I never trained for, a journey I never asked for, and a level of emotional and physical exhaustion I never imagined.

Like so many caregivers, I didn’t just care for my mom, I fought for her until she passed. Now, through my work, I meet families every day doing the same, often with few tools, little support, and no roadmap or training.

The Alzheimer’s Association says nearly 12 million Americans are unpaid caregivers specifically for dementia and Alzheimer’s patients. Another 53 million people nationwide are providing care and support to loved ones with other chronic conditions or disabilities, according to the Centers for Disease Control and Prevention.

Many of these selfless and caring people suffer from burnout, isolation, depression, anxiety, decision-making fatigue and medical ailments of their own that get pushed to the back burner. Most of us have heard stories of caregivers passing away before their care recipient, particularly among spouses.

What Alzheimer’s and dementia caregivers really need and rarely get are support systems that ease their burden, alone time to care for themselves, resources tailored to their personal journey, training, respite, mentorship and community. These tools exist, but where do we find them?

This is what keeps me up at night, wondering how we can do more to support these caregivers. A good starting point is the Alzheimer’s Association website, which offers educational materials and updates on the latest research. They also offer a 24-hour helpline. Here in the Valley, the Desert Southwest Chapter provides early-stage programs, education and support groups to help connect caregivers with each other. I always encourage families to explore this resource as soon as a diagnosis is made.

There are also a number of adult day care centers in the Valley that not only provide hours of respite and peace of mind to the care partner but can be critical for the member. These adult care centers can be an important way for your loved one to receive additional recreational enrichment experiences.

Non-medical home care services, like Hearts For Dementia, also can offer families a lifeline with much-needed flexibility and relief. Whether it’s a few hours a day, full-time, or just a couple of days per week, a trained caregiver can assist with daily tasks, companionship, personal care, mobility, and more.

And now, thanks to the Centers for Medicare & Medicaid Services, no cost healthcare support is available to those who qualify. Almost 400 participants across the country, including Hearts For Dementia, are rolling out this new dementia care program to increase care and improve access to services and support, all free to Medicare beneficiaries.

This new model, called GUIDE (Guiding an Improved Dementia Experience) is a game-changer, and was created to provide ongoing support.

For those searching for even more help and training, I’ve spent months developing a master class, specifically for Alzheimer’s and dementia caregivers which will soon be available. This new educational course will cover everything from daily activities and safety planning to effective communication and self-care.

My goal with this program is to equip people with the knowledge to support their loved one and the tools to help them care for themselves. While this curriculum requires a fee, I do have a host of blogs, and video tutorials available on my website at no cost to help people navigate this difficult journey.

I couldn’t save my mother from Alzheimer’s, but I can honor her by helping others walk this road with less fear, more knowledge, and real support. That’s why I built Hearts For Dementia. We were never meant to do this alone. With the right tools, support, and community, it is possible to tend to someone else’s needs, but we must preserve our own.

Editor’s note: Lolita Tramel, DNP is a doctor of nursing practice and dual-board certified family and psychiatric mental health nurse practitioner. She is founder and CEO of Scottsdale-based Hearts For Dementia. Please send your comments to AzOpinions@iniusa.org. We are committed to publishing a wide variety of reader opinions, as long as they meet our Civility Guidelines.