Young caregivers and dementia

Young caregivers are people under the age of 30 who provide care for a family member, friend or neighbour. Young caregivers care for people with many different conditions. Some examples include chronic diseases (cancer, arthritis, heart disease), people with mental health disabilities, people with physical disabilities, and more. And some young caregivers provide care to people living with dementia.

Young caregivers can provide personal or emotional care, or some (but not all) provide financial support.

Young caregivers are often a hidden population that help their family and friends. This is because when most people think about caregivers, a child, teenager or young adult is not who first comes to mind. Instead, people tend to think about middle-aged or older adults, people who are perhaps caring for a parent or partner.

It is important to recognize young caregivers, so we can continue creating more resources and supports that are appropriate for their age and unique needs.

The Young Caregivers Association has highlighted the following data about this group in Canada:

In 2012, Statistics Canada identified that there were approximately 1.25 million young caregivers in Canada.
Vivian Stamatopoulos, a sociology research scientist, says that on average, young caregivers in Canada provide between 14 and 27 hours of care per week.
Dr. Stamatopoulos also found that the unpaid help that one young caregiver provides equals yearly savings of $25,000 to $50,000 for the family and health-care system.

Since these statistics were released, the number of people in Canada living with dementia has increased significantly. And it’s likely that the number of young caregivers for dementia has too.

For instance, in 2020, more than 600,000 people in Canada were living with dementia. And by 2050, more than 650,000 family and friend care partners will be needed to support people living with dementia in Canada.

Perhaps you consider yourself a young caregiver. Or maybe your child, coworker, student, client or patient is a young caregiver.

In all cases, here are some things you should know.

Young caregivers do many helpful things

Young caregivers may help take care of a parent, grandparent, sibling, friend, neighbour or someone else. Young caregivers assist with many tasks such as:

Cook for or help the person prepare meals.
Help dress a person with dementia.
Provide an income to help the care of the person.
Provide care and support to other people in their family, like a parent or siblings.

Here are some other roles that young caregivers for people with dementia may have.

Provide emotional support to people with dementia and to their caregivers

This may include:

Listening and trying to understand what the person is going through.
Providing support to other friends and family members.
Calling the person living with dementia regularly (for example, once a day) to check in, especially if they provide care from far away.

In a 2021 research study, some young caregivers shared that sometimes it can be difficult to get the parent or adult who is the main caregiver to care for themselves.

“It's surprisingly difficult to get my mom to take care of herself,” one young caregiver experienced. “And she knows that she's supposed to, right? She knows better than anybody, right? Because she was nurse and a nurse that worked in home care. It's still surprisingly difficult to get her, to get her to access her own self-care. As she's a caregiver.”

When this happens, many young caregivers want to provide support to that main caregiver.

“It’s less about me but more about my dad,” one said: “[…] and me and my brother kind of made a pact being like, ‘we can't let dad quit his job’ because we thought that he needed it as an outlet just for himself. So he doesn't become a full time caregiver.”

Help with daily activities

This may include:

Helping with everyday tasks such as bathing, taking medications or cleaning the house.
Adapting care as a person's needs change. For example, first a young caregiver may go on walks with the person. But if the person’s mobility decreases, perhaps a young caregiver can read with them and play some music.
Making sure the needs of the person are met, such as creating an environment where they can laugh and be happy.
Taking the person living with dementia to medical appointments or programs.

“I would go over in the morning, bathe her, help her dress, help with her breakfast, and then I would drop her off at the day program at our local Alzheimer’s Society, which would run for around eight hours each day,” says Ty, a young caregiver for his grandmother. “So that was such a huge respite for [my] mom.”

Advocate for proper care

This may include:

Attending medical appointments to ensure the proper care is received.
Listening, asking questions and note-taking when the person receives health or social care and support.

One young caregiver for their father living with dementia found that it was helpful to attend appointments, as they had a different view of dementia and their father’s experiences.

They contacted their father’s medical doctor, and told them,“‘…mom can’t be honest in front of you. Because it’ll just piss [my dad] off. And you’re not getting the situation […] they need to be seeing you more than once a year, my mother needs support of her own, he needs to be retested because he hasn’t been tested in 18 months.’ They retested him and he had lost another six points on his [cognitive test] score…”

This young caregiver was able to get better support from their health-care provider, both for their father who was living with dementia and for their mother who was the main caregiver. Had this young caregiver not shared their concerns at the medical appointment, things may have been missed.

Young caregivers have different roles from older caregivers

A lot of what young caregivers do may be similar to what older caregivers are doing. However, since they are younger, they have different kinds of roles and challenges.

Here are some examples:

They may experience stigma because they are young caregivers. Some older caregivers think that young caregivers’ duties are not as significant due to their young age, and may think they have less responsibility. However, this is false.

One young caregiver revealed that she was met with a negative response when sharing her experience with an older colleague who was also a caregiver. The colleague said that her caregiving was “so different than what [the young caregiver] did.” The young caregiver felt angry, because she felt her young caregiver role “[was] not seen as valuable” compared to that of the older caregiver.

Roles within the family may shift for young caregivers. For example, they may take on a parental role in the family unit, helping with finances, caring for younger siblings, or changing their career path to continue caregiving.

One young caregiver helped their family financially: “For me, it wasn't just dealing with dementia,” they said. “When I got here, I was in a really big shock. To see how bad the finances were. [They] just kind of borrowed everything against the house. And so I had a mortgage back home and then trying to keep up with her. That…it was, I was so over, overwhelmed with that.”

There is a lack of age-appropriate services specifically for young caregivers. This can make their experience much harder.

“My support was sort of limited to informal,” said one young caregiver. “You know, chatting through things with my, my family, like my brothers, my dad and my wife, people who were sort of on the inside and knew what was going on.” But they couldn’t find formal supports like young caregiver-specific support groups.

Challenges young caregivers experience are unique

Young caregivers have a lot going on in their lives. And this can include a lot of emotional, physical and social challenges – particularly when society at large does not acknowledge that many children, teens and young adults have a caregiving role.

It is important for young caregivers to get access to help, information and supports when needed.

Many young caregivers are at different stages of their lives than older caregivers, and caregiving can have important impacts on their futures. Here are some examples:

Young caregivers may have to balance caregiving with attending school. Balancing schoolwork with caregiving can become overwhelming for some. Young caregivers may also miss school or work to help with care. This can have negative consequences both financially and professionally.

One young caregiver told researchers that she felt “guilt” for not visiting her parent with dementia as much as she wanted, and at times choosing to visit her mom was “a priority above school,” which caused her to not complete schoolwork on time.

Young caregivers may not be able to join social activities. For some, it can be hard to develop and maintain close relationships with friends due to time constraints.
Young caregivers may have to balance providing care to multiple people. For example, they may have young children of their own, while also supporting a grandparent or parent living with dementia.

Some young caregivers say their roles can put a “strain on their marriage due to difficulties balancing their commitments.” One young caregiver said that he would visit the person with dementia “every night” and that “all the parenting [of my kid] was left to [my] wife.”

Young caregivers may have to adapt their career to their care responsibilities. Some may choose to remain living with or near the person living with dementia. This can cause missed opportunities (education, extracurricular, professional) that would improve their career.
Some young caregivers have told researchers that they can feel “stuck in their life,” and “like a broken record,” as their life seems to revolve around caregiving.

Young caregivers can receive help at the Alzheimer Society

It is so important for young caregivers to feel like they have a community that is supportive. The Alzheimer Society is here to help young caregivers across Canada find their community.

The Young Caregiver Association is another great resource. It was originally founded by the Alzheimer Society of Brant, Haldimand Norfolk, Hamilton Halton, and continues to expand its resources for young caregivers across Canada.

Your local Alzheimer Society can link you to helpful resources, workshops, counselling, support groups and more. To find programs and services in your area, visit alzheimer.ca/Find. For more information, contact our National Information and Referrals Line at 1-855-705-4636 or info@alzheimer.ca.

To learn more about young caregivers for people living with dementia, visit alzheimer.ca/youngcaregivers.