Tips for young adults who care for a person with dementia

Young adults sometimes provide care to people living with dementia. Here’s some information that can help younger folks provide care.

A group of young adults smiling

Taking care of a person living with dementia can be rewarding. And it can also be stressful at times.

Dementia caregivers who are younger (under 30) can experience unique challenges around this, too.

For example, some young caregivers live or have grown up in unpredictable and unstable home environments. Due to this, they may avoid coming home or visiting after moving out. Many young caregivers may want to feel more like their friends who may have less responsibilities and more free time. Young caregivers may not have as much time for socializing and activities.

This happened to Ty, 26, a young caregiver in Toronto. “When people asked me to hang out, sometimes I would just have to say, ‘Hey, sorry, I can't, I'm helping out my grandma,’” Ty explains.

Feeling guilt is quite common among young caregivers. For example, when leaving home to attend school, as Ty also did: “I can't really do much [caregiving] and I feel bad about it. I felt I abandoned my family, in a way. And that was tough,” he explains.

Balancing life on top of caregiving responsibilities can be another challenge – as well as a way to cope. “I do extracurriculars, which is really good for my stress, and I go play volleyball, I do CrossFit. And I have a great group of friends that I love hanging out with,” Brittany, 23, explains. “I go on walks on the weekend. It's kind of my time to be with my family. So a calendar is kind of how I manage everything. But I have my priorities and it’s work and family. So I always make sure those are first before anything else.”

Here are some other tips young caregivers have shared with us.

1. Contact your local Alzheimer Society

Your local Alzheimer Society may have support groups or programs available for the person with dementia, yourself, or other family or friends. There are also other print and online resources they can provide you with.

“It can be very daunting because you don't know which resource to go to, and you don't know how to navigate these situations,” says Ty. “So having someone there to help was really helpful. And my grandmother also really loved those, our [local Alzheimer] Society had day programs, which were super helpful.”

Go to alzheimer.ca/Find to get your local info.

2. Take breaks from providing care if you can

If you can, getting involved in activities such as sports, community or school events, can be a helpful way to take personal time to rest.

For example, one young caregiver mentioned their part-time job helped them stay productive, while providing a needed break from caregiving: “It's kind of nice, like working […] my days are super long. So if I don't really want to go home and kind of face seeing my mom, I can still work, which is nice.”

3. Try to share what you're going through with trusted people

Many young caregivers find it hard to speak with others about what they are going through. However, talking with others, whether they are family, friends, a counsellor or a health-care provider, can be very helpful. It can also be a great way to acknowledge and reflect upon your feelings.

“During university, I decided that I wanted to share my caregiving story with two of my close friends,” Ty recalls. “And I remember the moment very clearly. We were just sitting in a parking lot, hanging out. And after telling them about my experiences, I remember feeling really great. Like a weight was lifted off my shoulders. And interestingly, they told me that they were also caring for their grandparents, as well! It was an unexpected, but very liberating feeling.”

4. Connect with others who have similar experiences

Sharing what you are experiencing with others in similar situations can help with coping, as well as contribute to a sense of community and belonging. One young caregiver found it nice to have an “understanding” with her friend whose mother had a similar disease. She explained that it’s nice when you “don’t have to explain how you feel.”

Check with your local Alzheimer Society about support groups. Ask them if they have an “adult child” or “young caregiver” support group, as some offer these services.

Here are some other organizations to consider contacting:

5. Practice self-care – however that looks to you

Ty recommends to “…do things that you genuinely enjoy and try to take time for yourself, however that looks. For me, I tried to just do things that I enjoyed. For instance, I personally love going to the gym, working out and playing sports. I also enjoy the social aspect that comes with physical activity!”

For other young adults, self-care can include doing creative projects. “I love to do paint by numbers and things like that and that's been what's really helpful for me,” said another young adult caregiver.

6. Celebrate the small moments

Caregiving can be difficult, but some young caregivers have found it helpful to celebrate the positive parts of caregiving, even if they’re small.

A young caregiver in a 2021 research study said, “I really do think that […] this different kind of love for your parent in that it's like a very unconditional love of, you know, they can act in certain ways and it can be hurtful because of the disease, because of the illness. But […] it doesn't impact you, in the way that you care about them it obviously impacts you, it hurts, it’s terrible. But you know, you have this love for them that will prevail, and you want to take care of them and give the care and just have them be comfortable and happy and celebrate […] those small moments.”

7. Remember that everyone's normal looks different

It can help to consider your caregiving situation as your new normal. Let go of things that have changed since becoming a caregiver for a person with dementia. For example, repeating the answers to questions may now be a normal part of your day and that is okay.

In 2021, a young caregiver explained, “It's not my burden to bear. It's not [my father’s] burden to bear. It's just a ‘thing-that-happens’ kind of deal. Just normalize it within my own life and that's kind of what helps me the most.”

8. Trust your instincts

One caregiver said that the best advice they could give to any caregiver is that “the decision that you [made] at that time was the right one.”

9. Pre-plan time for yourself

Setting aside time in your schedule to prioritize and fulfill your own needs is an important way to balance caregiving responsibilities with other parts of your life.

 “I also make it a goal every day to work out. I find that even before my mom's diagnosis, like, like getting a workout in each day helps me mental health wise, I don't think I would be sane if I didn't,” says one young caregiver.

10. It can be helpful to open up to others through counselling, therapy or peer support

“I do have a counselor that I speak with regularly who helps me a lot,” a young caregiver said in 2021.

Check with your local Alzheimer Society to access individual support at alzheimer.ca/Find.

The Government of Canada also has some great resources listing mental health support available within your province or territory. One of these resources is Wellness Together Canada, which offers mental health and substance resources and support. Call 1-866-585-0445 or visit wellnesstogether.ca/en-ca/contact.

The Canadian Mental Health Association also offers BounceBack, a free mood lifting program for young adults.

 

Even talking to trusted co-workers at your workplace can help.

“I'm very young. But hearing adults talk about what they do with their parents, it's more relatable than necessarily talking to my friends, because the people I work with have gone through something maybe similar. So it's nice to have that relatability there,” says Brittany.

Social media can also be a powerful tool to connect with other young caregivers.

Check out Care-tertainment: The Social Media Mavens of Dementia Caregiving hosted by Hilarity for Charity, to start finding people who are building a space on social media to talk about dementia caregiving.

Some young caregivers find that connecting with others through social media can make them feel less alone. For example, TikTok activist Nicole Petrie is a young caregiver for her mom with frontotemporal dementia.

11. Know that supports exist for young caregivers

  • Ask your health-care provider if there are local services nearby that would fit your needs.

12. Phone-only support services are also available to you

13. Remember that Alzheimer Society experts in your area can provide dementia-specific help

The Alzheimer Society in your area specializes in dementia support and can connect you with counselling, support groups, experts and information.

Check with your local Alzheimer Society and ask them if they offer adult children support groups.

Go to alzheimer.ca/find to get your local info, or call the national office at 1-855-705-4636 (email info@alzheimer.ca) to get linked up with your area team.

Other helpful resources