Let’s start at the beginning. What do you wish people knew?
The beginning is often the hardest, when you know something is wrong, but you don’t have a diagnosis or plan in place. In an ideal world, dementia care is something you’d discuss with your loved one before they decline. But that’s the ideal world.
It’s complicated, because people’s brains do change as they age. A big part of our Dementia Roadmap is helping people understand what’s normal aging versus when you should be concerned. A classic example: It’s normal to forget where you put your keys. It’s not normal to forget what a key is or how to use it. Some people notice changes in their interactions – a kind person suddenly becomes cruel. It’s a painful place to be.
At this stage, it’s about knowing your person well enough to know when their behavior is off. And trusting yourself even if others who aren’t as close to them can’t see it. This is when you want to take them to the doctor for a baseline evaluation of their cognition.
In this “ideal world,” what kinds of conversations should you have with your loved ones?
It’s important to have conversations about aging. If your person has dementia or it’s suspected, it’s critical to document who they want making medical decisions. When they can't advocate for themselves, they need somebody who's legally documented to advocate for them.
Then, there are painful conversations about quality of life. It's really hard. Especially in communities of color, as we tend to not talk about that stuff. We just assume that the family's going to take care of them. But “the family” is going to have different opinions. Often those differ from what the person wants.
Be prepared as difficult family dynamics may emerge. There tends to be one person who is closest to the person struggling with cognitive issues. That person will need to develop self-trust and get their family member in to see the doctor.
"You will have to do things that you’d never do if your person wasn’t sick. To keep your person safe, you will have to take away their keys. You will have to hide their medications. You will have to baby proof your house. You will do things that feel invalidating. This is especially hard if the person you are caring for is your parent. It’s hard, and you will feel bad. This is why you need a support network." – Channing Tate, PhD, MPH
What if your person refuses to see their doctor or take a cognitive test?
Unfortunately, you just have to ride this phase out. Continue to advocate for your person to see their doctor. Legally, this person is an adult. You can’t force them. Your only other options are to get a guardianship or conservatorship. You must prove to the courts that your person is incompetent and can't make their own decisions. It's a whole layer of stress and pain for everyone involved.
Can family members work with their loved ones’ doctors?
Yes, let your doctors help you. A good doc can say to your loved one, “I’m concerned about you. I really think you need to get this evaluation.” Sometimes patients will listen more when a doctor expresses concern.
It’s also appropriate to write a note or leave a voicemail for their doctor. Let them know that you’re bringing your loved one in, express your concerns, then ask: Can you make sure this gets addressed? If they say no, it might be time to find your person a new doctor.
Communicate with the doctor about the other aspects of your person’s health. Specifically ask about other things that could be causing decline. Diet, medications, diabetes and even heart disease can contribute. Ask the doctor to explore all options that could be affecting your person's decline.
"Dementia is a disease that changes your loved one's brain structure. As they get sicker, they become less like the person that you knew. The disease changes their personality and their behavior. Every day will be different, and you’ll need to roll with it in real time. Recognize that they aren’t choosing to behave the way they are behaving." – Channing Tate, PhD, MPH
You use the word painful a lot. Can you speak on this?
As a caregiver of someone with dementia, your entire world is about keeping that person safe. And to do so, you must give yourself permission to take care of yourself from the start. You may feel guilty and unsure, but it’s essential to take respites to recharge and refuel.
When I speak of pain, this is what I mean: You will have to do things that you’d never do if your person wasn’t sick. To keep your person safe, you will have to take away their keys. You will have to hide their medications. You will have to baby proof your house. You will do things that feel invalidating. This is especially hard if the person you are caring for is your parent. It’s hard, and you will feel bad. This is why you need a support network.
Are you talking about therapy?
I'm a big proponent of mental health services, so, yes, go to therapy if that feels right to you. They can help you set boundaries that will allow you to continue doing the things that feed your soul.
But I’m also talking about connecting with caregiver support groups so you can talk to other people who are going through it. Because unless you’ve cared for someone with dementia, you don’t understand. There are groups on social media and in-person group meet-ups. The Alzheimer’s Association website has resources. You may need to look for a bit, but they are out there. You'll find a lot of wisdom and advice in those rooms. They can help you find clarity even when you're just trying to figure out if something is wrong.
What do you wish you knew when you were at the beginning stages?
I wish we would have known more about the resources that were available to help my dad and to help us. Many people find themselves in the in-between – not wealthy enough to finance the care that’s needed but unable to qualify for assistance through Medicaid. Consult the area agencies on aging as they can help you find caregivers, support groups and other resources. Work with a care coordinator who can help you understand their insurance and available resources. If there’s someone in your life who wants to help, let them do the research while you’re caring for your person.
What should people keep in mind as they navigate this journey?
Dementia is a disease that changes your loved one's brain structure. As they get sicker, they become less like the person that you knew. The disease changes their personality and their behavior. Every day will be different, and you’ll need to roll with it in real time. Recognize that they aren’t choosing to behave the way they are behaving. It’s hard to not feel frustrated or argue with them when they are in a feedback loop with information that’s not true. Let them speak while recognizing that dementia is driving their behavior and thought processes. Again, it’s painful. This is why your support network is so important.
Additional Resources
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