Tips for kids who help take care of people with dementia
Kids sometimes help care for people living with dementia. Here’s some information that can help these young caregivers.
It can be hard to help care for a person living with dementia. They may be a parent, grandparent, neighbour or friend. It can also be stressful sometimes.
Dementia caregivers who are children – sometimes called “young caregivers” -- can experience unique challenges around this too.
Here is more information about dementia, and some tips young caregivers in this age group have shared.
Some information about dementia
When people have dementia:
- They may forget people, things or places
- They may get confused
- They may have trouble speaking, seeing and/or taking care of themselves
There are lots of different types of dementia. Here are a few of the most common types:
- Alzheimer’s disease
- Vascular dementia
- Lewy body dementia
- Frontotemporal dementia
- And more.
Each type of dementia can affect a person in different ways. So learning what type a person has can help.
Why do some people get dementia?
Scientists don’t know why some people get dementia. But they are working hard to find out, so they can stop it from happening and help the people that live with it. Here are some things that scientists know about dementia:
- You can’t get dementia from another person, like the cold or the flu. If someone in your family has dementia, this doesn’t mean you will get it for sure.
- Dementia is not a normal part of growing old.
- Most people who have dementia are over 65 but sometimes people in their 20s, 30s, 40s or 50s can get it. As people get older, their chances of developing dementia increase.
How can we know if someone has dementia?
A diagnosis is the term health-care providers use when they figure out what is making a person sick or unwell.
To give a dementia diagnosis, health-care providers do a number of physical and mental tests. These tests help figure out if someone is showing signs of dementia. Once the health-care provider has enough information collected, along with medical history, they should be able to provide an official diagnosis.
It can take time for family and friends to understand a diagnosis. Talk to a health-care provider or social service worker if you need help adjusting and understanding what a diagnosis might mean for you and your family.
If you are helping to take care of someone with dementia, here are a list of tips that may be helpful for you:
1. It's okay to have strong feelings about caregiving
Some kids who find out that a family member or friend has dementia say they feel shocked or confused for a long time. Or other feelings can come up, like worry, fear or anger. These emotions are normal – you are not alone.
2. Talk to a trusted adult about how you are feeling
Talking to a trusted adult can help. This could be a parent, guardian, teacher, counsellor or neighbour. This is someone who is thoughtful, a good listener and believes you when you tell them something. Ask them any questions you may have. Being honest can help.
Visit Kids Help Phone’s website to learn more about how to identify a safe adult and how to start a conversation.
3. Accept that your life at home may change
It is normal for your home life to change when you help to support someone living with dementia. Some kids have to help with housework. Others might need to spend more time with the person living with dementia, and help them with meals or getting dressed. And some kids might help care for their siblings more.
4. Try to appreciate special little moments with the person with dementia
One young caregiver said that hearing the person say “I love you” made them happy. Other young caregivers enjoy sharing a snack or going to the park with the person living with dementia. Looking at photos or videos together can be fun too.
What activities do you and the person living with dementia enjoy? Sharing those moments together can be a great way to feel closer.
5. If possible, have your parent or guardian tell your teacher or school about the person you help care for
Teachers often do not know what young caregivers are or who in their classroom might be one. It can be helpful to tell them about what you are going through.
This can help if you need more time with schoolwork, arrive late to class or have to miss some school to help at home.
Try to get in touch with the school guidance counsellor as well. If you don’t know how to do this, ask a parent, guardian or teacher.
6. Talk to trusted friends or classmates
Other children may not know what it is like to be a young caregiver, or what dementia is. But it can help to talk to other students or trusted friends about what you are going through, if you are comfortable. You never know if someone else is going through the same thing.
7. Think about asking to see a counsellor, social worker or therapist
If you are feeling overwhelmed or stressed, having a safe space to talk can be very helpful. Ask your parent/guardian, teacher or doctor if they could get you in contact with someone.
It is helpful if the social worker, counsellor or therapist know about your experience, and about dementia. These are trusted adults who can help you talk through your emotions.
The Alzheimer Society also has resources to connect you with too. Locate your local Society at alzheimer.ca/Find or email [email protected] (or call 1-855-705-4636). You can also call the Kids Help Phone at 1-800-668-6868.
8. Connect with other kids who are going through similar experiences
Some kids find it helps to talk with their siblings. Share what you all are going through. And help each other out if you can.
Going to support groups with other kids with similar experiences can also be helpful. This can mean kids who are helping with dementia care, or who are caregiving for other conditions or illnesses.
Here are some resources that you might find helpful:
- Young Caregivers Association hosts virtual workshops you can attend. Email [email protected] for more information.
- Young Caregivers Connect has an online discussion forum, as well as a monthly virtual support group.
- Alzheimer Society of Saskatchewan online young caregiver support group. You don’t need to be from Saskatchewan to join—people in other parts of Canada can participate too.
- Lorenzo’s House offers a virtual support group for kids aged 4 to 8, and another for kids aged 9-12, who have a parent with young onset dementia. Every year, Lorenzo’s House also hosts a virtual Youth Summit, bringing together young caregivers from around the world. Visit their website here to learn more. They also offer a virtual support group for kids whose parent with young onset dementia has passed away, on the 4th Wednesday of each month.
9. Get involved in activities you enjoy
Being a young caregiver can take up a lot of time. But try to still make time for things you love to do. Whether that is sports, art, listening to or making music, talking to your friends, reading or writing. Do something just for you!
10. Learn what other young caregivers recommend
Below are some tips from other kids who help a person living with dementia:
- Be there to listen when the person with dementia or a family member needs to talk.
- Be patient with the person. Some days will be better than others.
- Do activities with the person with dementia that they enjoy. For example, playing card games, going for walks or painting together.
- Use clear and simple language and speak slowly.
- Help the person stick with a daily routine.
- Offer to help with things that the person may find difficult. Early on, this could be helping them remember names. And later, it could mean helping to feed their pets or fold laundry.
11. Text or call for emotional support and other help if you need it
- Kids Help Phone – Call 1-800-668-6868, text CONNECT to 686868, or chat on their website to get support 24/7.
- Black Youth Helpline - Available every day across the country at 416-285-9944 or toll-free 1-833-294-8650.
- Hope for Wellness Help Line – Available 24/7, call 1-855-242-3310 or chat on their website with services available in Cree, Ojibway, Inuktitut, English, and French and open to all Indigenous people across Canada.
Other websites with helpful information
You are not alone. Resources and supports are available to help you.
- Alzheimer Society of Canada - What kids need to know about young onset dementia
- Young Caregivers Association – Resources for young caregivers
- Forward with Dementia - Dementia resources in other languages
- Association for Frontotemporal Degeneration – Kids and Teens
- Alzheimer’s Association – For kids
- Dementia Australia – Dementia in my family
- Alzheimer’s Research UK – Juniors and Young kids
- Dementia UK – Resources for children and young people
- Dementia Australia – Dementia in my family
- Canadian Virtual Hospice – KidsGrief.ca
- AMI-Québec/RAANM – KARE Magazine - This magazine includes information and stories about what being a young carer is like, emotional regulation and self-care strategies, tips for balancing school and caregiving, media recommendations, and where to find help.