Support for Young Carers | YMyHealth

When Carrie Aalberts' grandmother was suddenly thrust into dementia following a serious car accident, her father became an overnight caregiver with little guidance or support. That childhood experience sparked a lifelong passion that would lead Aalberts to earn her Master's in Gerontology and eventually create Dementia Darling, one of Instagram's largest caregiving communities.

In this candid conversation, Aalberts shares invaluable insights about the unique challenges facing young caregivers and offers practical advice for building essential support systems.

How do you define a "young caregiver"?

Carrie Aalberts: “I definitely think anyone under 50, sometimes even 60. And honestly, it starts even younger than people realize. We see caregivers who are toddlers. There are kids caregiving for their parents or grandparents, so youth caregivers are absolutely part of this conversation. This is becoming so common, yet it's still not being talked about enough.

For people in their 20s and 30s, our millennial friends, this is where we're establishing our lives. We're trying to figure out how we fit in the world, how we're going to support ourselves financially. The sandwich caregivers, those caring for both children and aging parents, face an especially challenging situation.”

What makes caregiving uniquely challenging for millennials?

“These are supposed to be your prime years where you're establishing yourself and figuring out your place in the world. But look at what millennials have experienced: we've lived through multiple historical crises and have had to adapt in ways previous generations didn't.

We're having fewer children and getting married less frequently because we're trying to survive. With technology, we're on 24/7. When our parents' generation went home from work, that was their time. Now, you're never truly off.

On top of that, many of us are trying to heal parts of ourselves and break generational patterns while learning about boundaries. How do you do that when you're caring for someone? I've had to change my language because caregivers have told me, "Please don't say loved one because I don't necessarily love this person, but I'm taking care of them." That's so valid. Someone could have been abusive to you, and now you're their full-time caregiver. That adds another layer of grief on top of everything else.”

Are there different categories of caregiving that require different forms of support?

“Absolutely. I often hear from younger people who try to find community by going to support groups, only to find they're the only person in their 20s or 30s in a room full of 80-year-olds caring for a spouse. It's just not the same experience.

There's a whole spectrum of caregivers, and all are valuable and needed. We see people who live full-time with their person, providing 24/7 care. But we also see long-distance caregivers who are still mentally on call all the time, coordinating care from afar. There are caregivers who can't be there physically but do research, handle finances, or manage legal preparations. Some people show up to cook and clean. Friends who come to hang out with your mom are caregivers too.

The misconception is that if you're not living with someone and showering them, you're not really their caregiver. But if you're providing any type of care to help someone live their life fully, you're a caregiver. Even helping your neighbor get their mail because they can't walk down the driveway is a form of caregiving.”

What about caregivers whose loved ones move into assisted living or memory care?

“This is so important. A big misconception in senior care is that if your person goes to a community setting, you've failed and you're not a caregiver anymore. That's absolutely not true. You are still on 24/7. Even if you turn your phone off, they'll probably find you.

I used to say to families, "We have your loved one now, you can be the daughter again." I've learned to take that back because they've always been the daughter, and that never stopped. They also became a caregiver. It's important to acknowledge that your caregiving changes, but it's still all valid and vital, no matter what kind of care you're providing.”

What are the most important areas of support that young caregivers need to focus on early in their journey?

“First, I want to acknowledge that it's frustrating to hear you now have all these things you need to do when you just got a diagnosis or became a caregiver. But these are things to strive for and keep in mind.

Community is everything. Unfortunately, with how technology has changed our lives, we've become more separated physically. We need to start looking for community right away, not wait until a crisis hits, because then we're not going to find the people we need.

Look for what's out there, whether it's physical groups in your community or virtual support groups. You can find incredibly specific groups now, like a millennial support group for people caring for mothers with frontotemporal dementia (FTD). It's incredible.

I also want to say that when finding community, the people you think will show up don't always do so. That can be really disheartening, but don't waste time wishing those people would show up. Sometimes your caregiving journey brings new people into your life because they understand. Other caregivers will understand you in a special way.”

What healthcare professionals should young caregivers reach out to for resources?

“Many people don't realize that individuals living with dementia can benefit from occupational therapy, speech therapy, and physical therapy. These specialists can lead you to resources you wouldn't find through general practitioners.

Case managers and care managers are incredibly valuable. You can often get connected through your area's Agency on Aging, and through various caregiver associations, sometimes on a sliding scale or even free if you qualify. They help you navigate what's available in your area and what you need to get creative with.

I also want to mention the app Steady (S-T-E-A-D-I-I), which offers free care management specifically for dementia caregivers. It's amazing. There must be similar resources for other conditions as well.

Social workers at hospitals can point you in the right direction. And if you can find therapists who specialize in caregiving, especially those who are caregivers themselves, that can be incredibly helpful.”

Why is mental health support so critical for young caregivers?

“I need to be frank about this because the statistics are alarming. About 40% of caregivers die before the person they're caring for, according to a Stanford study. That's a dark statistic, but it's real.

Mental health is serious. You cannot put it on the back burner. If we're not taking care of our mental health and physical health, we're not just hurting ourselves. Poor mental health significantly increases your risk for dementia, which is something many caregivers fear, especially if they're caring for someone with dementia.

Caregiving leads to high rates of depression, anxiety, and chronic stress. We're learning about cortisol levels and how stress affects our overall health. From the beginning, remember it's not selfish to take care of yourself. It's necessary. If you don't take time for yourself, the universe will force you to. I didn't take time for myself and fell down stairs a month ago with a serious injury. The universe was telling me to stop and sit down.”

How can caregivers practice self-care when they have so little time or energy?

“First, speak up in your daily life about your caregiving. People are often quiet about it, but almost everyone has a connection to caregiving. When you're confident in speaking up about your role, you'll be surprised at who will offer help or connect you with valuable resources.

If you feel comfortable, share your experience. There are millions of people around you dealing with similar situations. Even if you're not religious, communities like churches often show up for their caregivers in incredible ways.

Try to make an appointment for yourself every time you make one for your loved one. Keep it fair and balanced. You're just as important.

Find ways to weave things you love into activities with your person. It doesn't always have to be about what they want. You can watch a movie you want to watch together. You can invite them to make your favorite cookies. This can be a form of self-care while still being present.”

The issue of siblings not showing up is incredibly common.What advice do you have?

“This is probably one of the biggest issues I see, along with finances and finding respite care. That video I made about siblings not showing up was one of my biggest ever. Celebrities have even messaged me about it. This doesn't discriminate. It happens across the board.

It's so valid to feel angry when you're showing up and others aren't. But at some point, you have to let them be what they are. The biggest thing is trying to start conversations early about what you're comfortable with and setting realistic expectations.

When you have conversations, remind everyone: we're not against each other here. We're on the same team for this one person. Sometimes siblings think they're doing things for you when really, you're both doing things for your parent.

Lean on their strengths. If your brother won't help with physical care, but he's good with money, let him handle finances. If he can call the banks or the doctor, that's still caregiving. Ask: What are you comfortable with? Give people permission to do something that feels more comfortable for them.”

How do you handle siblings who stay away because they "don't want to remember them like this"?

“This is so difficult. I tell people: your loved one didn't choose this, and they wouldn't want this either, but this is reality. That doesn't mean you can just not show up. They didn't choose this; you didn't choose this. Yes, it's horrific, but two things can be true at once: this is terrible, and this is still my person and they're still here.

Having family education sessions can be really helpful. I've been on Zoom calls with families where I can explain that mom isn't being difficult; it's her brain change. She doesn't actually hate you. She doesn't know who you are right now because she's in a different timeline. Pushing on empathy and sharing resources can help people understand.

If siblings are far away and don't understand the severity, send pictures and videos. Show them what you're dealing with 24/7 versus what they see for an hour on holidays.”

How can young caregivers maintain friendships when friends don't understand?

“This is heartbreaking. I learned from kids in programs like Lorenzo's House, which supports families dealing with young-onset dementia, about how devastating this can be. One girl told her best friend in college about her dad's dementia, and her friend said, "That's too heavy for me," and stopped talking to her.

First, protect your heart. If you have a feeling a friend isn't going to get it or they're too immature, maybe don't share so much with them. Think about having a friend you can escape with, someone you don't always talk about caregiving with.

Sometimes giving expectations can help. Tell a friend: "Sometimes I'm going to want to talk about this, but sometimes I don't. I'll bring it up if I want to talk. When I do, I just need you to listen and tell me this sucks. I don't need you to solve anything."

For friends of caregivers: reach out to them. Say, "You don't have to answer, just know I love you." Those messages go so far.

Don't give up on finding understanding friends just because one person let you down. The people who do understand are out there.”

What are your top recommended resources for young caregivers?

“Here are some essential resources:

Steady App (steadii.com): Free care management specifically for dementia caregivers
Hilarity for Charity (HFC): Seth Rogen's organization offering support groups for millennial caregivers, Black millennial caregivers, young men, and various dementia types. They also have a Caregiver Roadmap and respite grants
Lorenzo's House: Supports families of young-onset dementia (anyone with dementia under 60), with groups for caregivers as young as three years old
NAMI (National Alliance on Mental Illness): Great mental health resources
Alzheimer's Association 24/7 Hotline: For dementia-specific support
Zen Caregiving Project (zencaregiving.org): Mindfulness resources, webinars, and printable worksheets for caregivers
Family Caregiver Alliance: Comprehensive caregiver resources
Caregiver Action Network (caregiveraction.org): Free caregiver resources

Don't forget to check associations specific to what you're dealing with. Most conditions have their own associations that offer local and state support groups.”

What are the top three things you want young caregivers to remember?

“First, know that you are worthy of support. You are worthy of your health and well-being. You deserve community. Give yourself permission to make finding support a priority for yourself and your loved one.

Second, you are not alone. I know it feels that way at 3 a.m. when you're crying on the floor. But there are thousands of people crying alone at 3 a.m., too. In those moments when you feel hopeless and helpless, reach out. Do not hold onto that alone.

Third, give yourself grace. Give yourself grace when things don't go as planned with finding community or getting the right mental health resources. Give yourself grace if your therapist doesn't work out or you miss an appointment. Don't beat yourself up. Every day is a new chance. Every decision is a new chance to put yourself first whenever possible.”

Want to hear more from Carrie, aka @dementiadarling? Check out the YMyHealth podcast on all streaming services and on our YouTube channel!

Finding Support Systems for Young Caregivers: A Q&A with Dementia Expert Carrie Aalberts