When is it time to consider dementia care?

First things first, what is dementia care? Dementia care, or memory care, typically describes a senior living community, or perhaps a wing or hallway in a senior living community, that is designed specifically for people with dementia. This type of community could be assisted living, skilled nursing, a standalone building, or even a split building that is licensed as assisted living but offers a dementia care unit. 

Perhaps one of the most common questions I get asked is, “How do I know when it’s time to move my loved one into dementia care?” Believe it or not, I actually offer a simple, one-sentence answer: 

If you’ve been thinking about it, it’s probably been time for a while.

The reason I offer that simple answer is because I have seen many families wait far too long to move a loved one into dementia care. I would say, on average, people wait about two years too long to make the move. And, rightfully so: they have seen Hollywood depictions of dementia care units as terrifying, white-walled spaces that offer no engagement with the outside world. Residents are sat in wheelchairs near windows, forced to stare outside all day. Visitors come to see them, and they do not engage, or do not recognize their family members. 

In reality, this is not at all what current dementia care environments are like: most communities are attractive, inside and out, and offer activities, meals, and outings catered to meet the needs of people with dementia. 

But how do you know when to move someone?

Very, very rarely have I ever seen someone with dementia moved to dementia care too early. In fact, I’ve only seen this happen twice in my career. In both cases, the residents were far too mild in their dementia to “fit in well” with the other residents. Very often, however, I find myself thinking, “Wow, this resident would’ve done really well here if they’d moved in a couple years ago!”

Here are some reasons that you may want to consider moving someone into a dementia care community:

1. Life at home isn’t working out. Perhaps your loved one has been living alone, and it’s clearly unsafe to continue letting them do that. Maybe they’ve been living with you, but their care needs are far too great. Perhaps you have tried a home care agency, but they’ve been unreliable, and you are stuck bearing the weight of the caregiving burden. 
2. You are exhausted. Most caregivers I meet don’t even think of themselves as caregivers; instead, they just believe that it’s their duty to care for the person they’re caring for. They put themselves second, and don’t believe that their own exhaustion is a good reason to consider moving their loved one. I’m here to tell you: it is. If you are exhausted, your loved one is going to receive worse care. You, too, have a life to live.
3. Their physical or emotional care needs have gotten significantly greater. Perhaps dad has dementia and he’s become incontinent. Maybe your spouse has dementia and has started raiding the fridge every chance she gets. These are just two of the reasons that someone’s care has extended past the point that you are able to do it by yourself, or even with a small team.
4. They live in assisted living or independent living, but they seem to be missing meals, forgetting to dress themselves, or are withdrawing from activities. Dementia care communities are specialized environments built for people with dementia. The best example is mealtime: in assisted living, the staff typically does not go fetch all of their residents to bring them down to meals. In dementia care, we ensure each resident is seated and ready to eat before we bring out the food.
5. They are bored, depressed, or generally withdrawing from human interaction. Engaging in normal, everyday conversation can be difficult for someone with dementia if they have trouble keeping up. One of the best things about dementia care communities is that residents are around people of their cognitive level: they’re able to engage, relax, and enjoy activities that are built for them and their new friends.

I’ve often found that dementia care communities become a last-ditch resort instead of the first potential option. Guilt is a huge factor when it comes to deciding to move a loved one, as many families feel like they “have to be” the 24/7 care provider. Truly, though, you can still be an amazing caregiver when your loved one lives in dementia care. In fact, you may both be healthier and happier for it.

Rachael Wonderlin is a dementia care consultant, author, trainer, and community designer. She has a Master’s in Gerontology from UNC Greensboro, and owns Dementia By Day, LLC.