Guiding Families Through Long-Term Dementia Care

I started working with older adults when I was only 15 years old. My best friend and I would go twice a week to volunteer at a local skilled nursing facility. I remember one day she said to me, “You’re really good at working with old people.” This was a funny thing to hear, because I had not realized that working with older adults could be something that people were “good” or “bad” at. I asked her, “Is that a skill?” and I remember her saying, “I think so, maybe you should work with old people for a living.”

Honestly, that was the first time that anyone ever talked to me about working with older adults as an option for my future. No one ever talks about choosing geriatrics as a career path.

Just like that, no one ever talks about what happens after you move a loved one into a long-term dementia care community. Everyone wants to talk about caring for loved ones with dementia at home. There is a ton of information out there for people who need advice for when mom won’t take a shower, or for when dad keeps trying to drive the car. But what happens, I asked myself, when someone needs to move a person into a care community? What information is out there for them? As it turns out, there isn’t a lot.

 I have worked in three different dementia care communities and I have visited and spoken at even more of them. Even though all of these communities are different, I still get asked similar questions from family members. Questions like, “What can I do with my mom when I visit?” or, “How can I leave after my visit without upsetting my sister with dementia?” and even, “Should I give my dad a room phone?” I pretended that I was a caregiver looking to move my parents into long-term dementia care, and turned to Google to start researching. I was alarmed to find that there was almost no information about what happens after you choose long-term dementia care for someone.

Each chapter in my book is a new chapter about what to expect, what to look for, and what to do when someone you know lives in a dementia care community. I cover the basics right off the bat: what dementia is, what dementia care is like, and how to talk to a loved one with a form of dementia. Each chapter in my book also includes at least two real-life, true stories from my time working in care communities to help explain confusing or challenging topics. I have changed my residents’ names and identities, but the stories are true.

My hope is that people who read this book will come away from it confident and guilt-free about choosing a dementia care community. They will know what to expect as their loved one’s dementia progresses, and they won’t feel as though they are floating, adrift in the ocean without information or help. Choosing a care community for a loved one’s care can be a unique blessing, and I hope that people who read my book will feel this way.

Rachael Wonderlin holds an MS in gerontology from the University of North Carolina–Greensboro. The memory care director of Senior Services of America, she is the author of the blog "Dementia By Day."  Her book, When Someone You Know Is Living in a Dementia Care Community: Words to Say and Things to Dois available now.