What can you expect when someone you love gets diagnosed with dementia?
Whether you’re new to caregiving or already in it, there are five big categories of change that every caregiver can expect. My goal is to help you prepare, in the best way possible, for what’s ahead.
Here’s what to expect after a dementia diagnosis, and one more change I’d add.
1. Thinking Changes: Dementia Isn’t Only Memory Loss
Let’s get the one we’re all familiar with out of the way first. No matter what type of dementia someone has, they will experience changes in their thinking.
And it may or may not be memory. We don’t have to have memory problems to have dementia.
It can be changes in their attention. Their ability to learn information. Their ability to follow instructions, be socially appropriate, understand language or speak it. All of those fall under thinking changes, and every person with any type of dementia will have problems with thinking.
So however your loved one is doing with their thinking today, expect it to change. They already have some challenges, and they’re going to have more. Either their current symptoms will get worse, or they’ll develop new thinking problems, or both.
2. Physical Changes in Dementia
The second category most of us might be familiar with too. No matter what type of dementia the person has, they will experience physical changes.
They will likely start to have problems using their body:
- Walking, moving, coordination and balance
- Picking something up or moving things around
- Seeing the environment accurately
- Even eating, and tasting food
3. The Impact on You, the Caregiver
The third thing every caregiver can expect is that dementia will have a profound impact on you.
Absolutely, caregiving can be rewarding. There can be so much joy and love in it. I want to say that first.
But as you prepare to care for a loved one with dementia, it’s important to know it will also come with incredible amounts of stress. Perhaps frustration, confusion and overwhelm.
That’s part of the process. It doesn’t mean you’re doing something wrong.
It means this is a really, really hard condition. There are limited specialists available. Lots of medical and healthcare providers don’t have much training or information on dementia. And there’s a lot of misinformation out there, so the more research you try to do on your own, the more confusing and overwhelming it can get.
So we can’t deny it. If you’re caring for a loved one with dementia, it will have an impact on you. Some of it positive. Some of it really hard, uncomfortable and difficult.
4. Frustration With the Healthcare System
I hate that this is a category, but it seems to be the case. If someone you love has dementia, you will likely experience some frustration with the healthcare system.
That could be:
- Trying to get things approved by insurance
- Getting appointments at a time and day that work for you, and soon enough to actually help
- Finding doctors and healthcare providers who have training in dementia and know what they’re talking about
- Finding ones who do, but only have a short amount of time with you, so you can’t get all the information
I explain why so many providers have so little dementia training in 5 facts about dementia caregiving every caregiver needs to know.
Then there’s figuring out how to qualify your loved one for certain services. Getting the right paperwork in place. Checking all the boxes.
All of this on its own can feel like a really difficult full-time job. And that’s before the actual caregiving, your own life, and everything else you’re responsible for.
If you’re in the first few months after a diagnosis, I lay out where to start in where to get help after a dementia diagnosis.
Our healthcare system, at least here in the United States, can feel really confusing and overwhelming in many ways. It helps to be prepared for it. So when it happens, you can think, “Oh, yep. This is part of the deal. I knew this was going to happen. This must be what it feels like.”
5. How Dementia Changes Your Relationships
The fifth thing we can all expect is that caring for someone with dementia is going to change your relationships.
It will change your relationship with the person you’re caring for. The dynamic shifts. If you’re a spouse, you may go from intimate conversations and romance to being more of a caregiver, a caretaker, a care partner, doing things you never would have done before. If you’re an adult child caring for a parent, it can feel like the roles have reversed.
It will also change your relationships with other people in your life.
If you’re caring for a parent and you’re married, it might change the relationship with your spouse. Maybe it brings you closer together, as you realize how supportive and understanding your spouse is. Maybe it adds some tension, as your spouse has a hard time with how much time you’re giving to caregiving.
It can change your relationships with family and friends, too. You’ll see some of them step up to the plate and be there for you, love you, care for you and support you in the most amazing and profound ways. That’s my goal and wish for everybody.
Not everybody gets that.
What most people see is that friends and family have no idea what to do. They feel very uncomfortable. They may not understand enough about dementia to understand everything you’re going through. And they might pull away. They might disappear, or move to the background, and you might find yourself with fewer relationships than you had at the beginning.
The Relationship With Yourself Changes Too
I should add one more. You’ll experience changes in the relationship you have with yourself.
Hopefully those changes will be really great. You may realize you’re capable of so much more than you thought. That you’re stronger than you ever imagined. That you’ve developed a sense of commitment, and boundaries, and a sense of knowing you’re doing the best you possibly can, even when other people don’t realize it.
There’s a lot of self-growth that happens in caregiving. That certainly doesn’t get talked about enough.
If these five changes sound familiar and you want to learn to work through them, it helps to have people around you who get it. Inside the Care Collective, we talk about this every single week: not only what’s happening, but how to get through it, how other Careblazers are getting through it, and how we can support one another along the way. You can learn more here.
