Published on: May 20, 2018
by Women’s Brain Health Initiative:
While millennials are often perceived as “selfish,” “entitled,” and “lazy” compared to other generations, there is a hidden group of individuals within this segment of the population that is far from these stereotypes – young carers. The Change Foundation, an independent health policy think-tank that works to inform positive change in Ontario’s health care system, defines a young carer as “a child, youth or young adult that provides physical, medical, emotional or other supports to a parent, grandparent or sibling.” This group of millennials has no time for their friends or cellphones, but instead is facing the immense responsibility and accountability of taking care of their loved ones.
According to the 2012 Statistics Canada Report, “Portrait of Caregivers,” over one-quarter (28%) of Canadians, or an estimated 8.1 million people, have provided care to a chronically ill, disabled, or aging family member or friend, and caregivers between the ages of 15 and 24 account for 15% of this figure. The Change Foundation suggests that the percentage of youth in a caregiving role is even higher than reported, as there is no data for young caregivers under the age of 15. The foundation further indicates that caregiving responsibilities can start in children as young as five.
In the U.S., a report released in 2005 by the National Alliance for Caregiving and the United Hospital Fund estimated that there were at least 1.3 million caregiving youths, between the ages of 8 and 18, nationwide.
Despite these staggering figures, young carers are often an invisible population of caregivers, partly because there are limited methods to capture the voices and statistics of young people, and partly because it is the norm to think of children as requiring care, not providing it. The needs of caregivers – both young and old – must be addressed, particularly in light of the fact that the number of Canadians who will require care is rapidly rising (for instance, a 2012 report from the Alzheimer Society of Canada predicts that by 2031, the number of individuals living with cognitive impairment, including dementia, may reach 1.4 million – this nearly doubles the 2011 figure of 747,000 Canadians).
The Day-To-Day Impact
Because young carers are often overlooked, they typically do not receive the care and support that they themselves need – which is especially troubling because they are a group that is typically more vulnerable, and require help and resources the most. Without the proper support, young carers may encounter educational, health, and social barriers that can last a lifetime. These barriers translate into costs and lost opportunities for young carers and for society as a whole.
As a result of their age and their stage in life, young carers tend to be less flexible with their careers and ability to take time off work. Trying to balance school, work, and social activities with their heavy responsibilities at home can be daunting and may at times seem impossible. Many young carers have yet to establish their own path of post-education, marriage, and children. The time that they spend caring for their loved ones compromises and sacrifices many aspects of their personal lives.
With this significant responsibility, there is also a shift in power and a change in the dynamics of the caregiver/patient relationship at a young age. As a result of these unique obstacles that young carers face, there is not only the need to provide them with the appropriate resources, but there is also a growing concern that the individuals they are caring for may not be receiving the level of care that they should be. Asking young carers to provide medication and emotional support, with fewer financial resources to support treatment and/or accessibility options, imposes significant pressures that are difficult to work through and to appropriately balance.
The Emotional Impact
The emotional toll of caring for an ailing parent or relative can be incredibly burdensome, particularly without a network of support. Adolescent caregivers, especially teenagers, often face a different set of challenges than adult caregivers. As The Change Foundation observes, young carers often grow up quickly and lose their childhoods too early. They can experience feelings of anger, isolation, loneliness, and grief – with some young carers suffering from depression or anxiety.
For many young carers, their school and work suffers because of their enhanced responsibilities and they typically have limited time to socialize with their peers or to participate in extracurricular activities. For others, though, the additional obligations help build self-esteem, compassion, resiliency, and independence, and they learn many important life lessons at an early age.
Dr. Peter Rabins, director of geriatric psychiatry at Johns Hopkins University, says that for teenagers, caregiving is difficult in part because it is unusual. “It’s a huge adjustment, even for very well-adjusted kids,” notes Dr. Rabins who co-authored The 36-Hour Day: A Family Guide to Caring for People who have Alzheimer Disease, Related Dementias, and Memory Loss.
Balancing the day-to-day and emotional impact of caregiving is difficult, but fortunately with greater awareness and education, there are support networks to lean on, and the list of available resources continues to grow.
Speaking from Experience: Advice from one young carer to another
When we asked a young carer, Kathryn Fudurich, if there was any advice that she could share with others, she had the following suggestions based on her personal experience caring for her mother and her grandfather with dementia.
Make time for yourself as much as possible.
Make time for the person with Alzheimer’s as stress free as possible.
Try to squeeze out every good moment that you can – while you can.
Be patient and understanding.
Try your best to take things day by day.
As things change, find support in online materials, counsellors, and the medical community.
Importantly, when it comes to awareness and education, Kathryn says, “I have definitely noticed the increase in resources for children of people living with early onset Alzheimer’s, as well as an increase in representation of this demographic in the news, in the medical community, and in my own network. When this started for me with my mother’s diagnosis I was 21, the majority of the people I connected with on the complexities of dealing with this diagnosis of a parent were middle aged, with parents going through the same thing as my mother, but age 70 and over. I found comfort in these bonds and relationships – but it was when I finally met others my own age (apart from my brothers), young women and men who were facing the same obstacles as I was career-wise, socially, and emotionally, that I felt more understood and felt a little relieved.”
In 2011, a group of young individuals affected by Alzheimer’s disease in different ways established the Young People Against Alzheimer’s (YPAA) to raise awareness among a young demographic through a series of events and initiatives, including its annual Toronto-based gala, Memory Ball. The event is targeted at young professionals and raises funds for the Alzheimer Society of Toronto, as well as provides an opportunity for young caregivers to meet and connect.
To date, the Memory Ball has raised nearly $500,000. “We wanted to do something to raise awareness and funds for a disease that we felt was completely misunderstood by our generation,” says Kathryn Fudurich, a co-founder of Memory Ball whose mother was diagnosed with early-onset Alzheimer’s disease in her early fifties.
“This disease is still misrepresented as only ‘an old person’s illness’ and that’s something we have been trying to change. We are also attempting to create an online community for those with parents under age 65 who have been diagnosed to come and connect. From personal experience, I know that finding someone who is not only going through the same thing as you, but who also is in a similar life stage to you, offers support and relief that is hard to beat.”
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