Tips for teens who are caring for people with dementia

As family, neighbours and community members, teenagers sometimes provide care to people living with dementia. Here’s some information that can help these young caregivers.

Teenage boy cooking with his grandmother

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

Dementia caregivers who are teenagers – sometimes called “young caregivers” – can experience unique challenges around this, too.

For example, sometimes young caregivers can feel that their friends do not understand them. Or they may have duties at home that make schoolwork more difficult to finish on time.

Some teenage caregivers have caregiving-related issues and activities on their mind on top of school and their social life. This type of worry and stress affected Olivia, a young caregiver in Toronto.

“I would say schoolwork was a little bit hard,” Olivia shares. “Also, just the fact of leaving her [my grandmother] at home alone...leaving the house when we needed to go to work or school. And having that extra [thought] just in the back of your head, like, ‘Oh I hope nothing happens where she falls’, things like that.”

An important thing to remember is that, like Olivia, you are not alone as a teenage caregiver. Many other teenagers are going through similar things.

Here are some tips teenage caregivers for people with dementia have shared.

1. Contact your local Alzheimer Society for help

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

Visit alzheimer.ca/Find to contact your local Alzheimer Society.

 

2. Practice patience and be kind to yourself if you get frustrated at times

“It's difficult to, I would say, just repeat the same task over and over again, and not get a little bit frazzled,” Olivia says.

Some days will be more challenging than others. Feeling anger, frustration or guilt sometimes is common for young caregivers. Try these tips when you notice these emotions:

3. Look for positive ways to spend time with the person you are caring for

Young caregivers suggested that “reminiscing about old memories” helped to avoid arguments by moving on to pleasant topics. Try watching TV or movies, or going on walks as well, if the person you care for is able.

When you can, try to shift your attitude towards caregiving to bring more positivity into your life. Using humour can be a helpful way to do this.

“My best advice to all those new to this situation is: Use a lot of humour! You have much to gain!” one teenage caregiver told researchers in 2016.

For example, try to find moments in the day to laugh together. Laughter has many benefits for our health. Researchers have found that laughter may improve your immune system, feelings of pain, sleep quality, breathing, depression and anxiety. However, more information is still required before making any specific recommendations.

That being said, always make sure that you are not laughing at someone else’s expense. Everyone deserves respect.

4. Try to make time for activities and routines outside your caregiving role that bring you joy

It is important to set time aside for yourself, no matter what. Even when it’s not easy to do, it can be a really great way to take a break and balance other responsibilities.

“It’s very, very hard just because when you have other stuff going on as well,” Olivia says. “It's tough having that extra load on your plate. So I would definitely say [it’s important to] find time to also take care of [my grandmother] and juggle other things in life.”

Teenage caregivers told researchers that directing “energy outside the home through sport, dance, choir and even volunteering” was beneficial.

Other teen caregivers have said that regularly “watching TV, having family meals, going shopping or on holidays” either with your family or by yourself can help.

And another teenage young caregiver suggested, “You try to continue with your life as normal as possible without things influencing you.”

5. Talk to your friends, if you feel comfortable

“I have a couple close friends who actually know my grandma's condition,” Olivia says. “It's hard going out [during] high school. All these people want to go out and stuff, right? Go to parties and things like that. And it is difficult because when my friends are like, ‘Oh, you should come to the [social event].’ But I can't because I got to stay home and watch my grandma.”

Sharing what you are going through with your friends can make you feel more comfortable around them. That way, if you need to reschedule hanging out with them, they will already know about your caregiving responsibilities. Maybe they can help you out sometimes too.

6. Choose how you want to respond to comments about your experience

One teenage caregiver for a person with dementia experienced “pretty rude’” comments from students at school when they learned about her mother’s condition.

In this kind of situation, other teenage dementia caregivers have told researchers “it can be helpful to  simply [ignore] people who are judgmental or unsympathetic” and to consider “openly sharing information about [dementia] with those willing to listen.”

Remember that you cannot control others’ behaviour, but you can control how you respond to and interact with others.

7. Try to have a positive, but realistic attitude

Many young caregivers aim to improve the life and health of the person they are helping.

But try to understand that you cannot make everything perfect. You can just do your best.

 “When he’s watching shows or reading his books, we like to let him be, but once in a while our grandma wants us to go and have some coffee with us or take him for a walk and that’s when we participate with him,” one teenage caregiver told researchers. “It’s not really challenging or enjoyable. He’s just silent. He doesn’t really like conversation; he just likes to get to go where he needs to.”

This young caregiver understands that the person with dementia is not always going to be actively engaged in activities. Sometimes they just want to sit in silence, and that is okay.

8. Seek support from your community, whether that is through work, religion, extracurricular activities or at the Alzheimer Society

Some teens find community in unexpected ways.

One teenage caregiver told researchers that she found social connections in her mother’s long-term care home:

“Getting to know a whole new community was kind of nice,” the teen caregiver said. “You always drive by long term care buildings, and […] never really think about it. But then you go there, and you're there alone and get to know people and kind of make some people's day, you know? […] some people don't really get visited often. You just saying ‘Hi’ can make someone's day. […] I would volunteer there […] so it was really nice to like, get to know some of this staff as well. And I know that my mom likes seeing me, so I can look forward to doing that. And not just for her, for everyone else there.”

The benefits of increasing our social connections have been known for a while now. According to researchers, increasing the amount and quality of our social relationships has been proven to improve our health.

9. Share your experience with siblings (if you have them) and friends, and try to see caregiving as an opportunity to become closer

Young caregivers in several research studies (here and here, for example) have spoken of being “grateful to have a sibling to confide in.”

If you don’t have siblings, or your siblings do not help out, try reaching out to friends to talk to instead. Having friends to talk to is just as powerful.

10. Connect with other young caregivers through social media

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.

Also 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 care.

11. Know that other supports exist for teen caregivers of people living with dementia

  • Young Caregiver Association has Powerhouse, a program for young caregivers with many different options, including summer camp, weekly respite, life skills coaching, counselling (group and individual) and teen programs. Powerhouse is for young caregivers aged 15 to 25. In-person services are offered in Ontario only.

12. Use phone-only support services if that's better for you

13. Access free mood-support services across the country

  • BounceBack is a free mood lifting program that helps you build skills to manage anxiety and depression through coaching and videos. Offered in multiple languages across Canada for ages 15 and up.
  • Kids Help Phone offers a 24/7 mental health support chat for youth. Reach them by texting CONNECT to 686868.all.
  • Black Youth Helpline is available every day across the country at 416-285-9944 or toll-free 1-833-294-8650. 1
  • Hope for Wellness Help Line is available 24/7 by calling 1-855-242-3310 or chatting on their website with services available in Cree, Ojibway, Inuktitut, English, and French and open to all Indigenous people across Canada.

14. Ask your doctor or health-care providers for local support in your area

Doctors or other health-care providers and social service workers often know about other support services (that might be helpful) you may be able to access as a young caregiver.

They can also provide referrals to different kinds of therapies, such as talk therapy.

15. 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 teenager or young caregiver support groups.

Go to alzheimer.ca/Find to get your local info, or call 1-855-705-4636 (or email info@alzheimer.ca) to get connected with your area team.

Other helpful resources

You are not alone. There are resources and supports available for you.