The stigma of dementia is changing through initiatives designed to provide youth education and support.
In the world of dementia care, we are finding increasing numbers of supports and education for adult caregivers – those who are perhaps spouses, adult children, or other extended family members. The one population of caregivers that often gets missed are youth. This particular group includes children and grandchildren. It can be particularly challenging for youth, who may often juggle school with caring for a parent or grandparent who has dementia, while also going through the many complex experiences that youth can face.
The stigma of dementia is a significant barrier for those whose lives are touched by it — either as a person with dementia or as a family member. Teens and young people may feel isolated because dementia is still not well known or understood by their peers, and they may be worried about being judged. In our experience of supporting caregivers, we find children and youth often grow up more quickly than their peers due to the increased demands of their role as caregiver.
So how do we support youth who are caregivers? Knowledge is key. Just like adult caregivers, youth need to understand the various types of dementia, the different ways they can be effective in providing support, and how to care for themselves. Youth caregivers also need the opportunity to ask questions and speak about what is happening in their life and to seek out a community of support. Young people particularly need validation and space to process the expectations of their situations. The fact that dementia is spoken about more openly in the media and public sphere is helping to remove the stigma associated with the disease.
Initiatives that connect youth to those with dementia help normalize those relationships and provide opportunities to learn about and connect with formal support services. McCormick Dementia Services has provided dementia education outreach to students at St. Thomas Aquinas High School and is involved in a new youth-focused dementia collaborative based out of Toronto that focuses on youth engagement, empowerment, and dementia education. The Spare a Thought for Dementia program is an organization that is focused on creating a world where youth are supported in their roles as care partners and advocates for persons living with dementia.
If you know someone who might benefit from joining a local community of youth caregivers of someone who has dementia, or even just needs individual support from a social worker, please feel free to have them contact us.
Submitted by the Social Workers at McCormick Dementia Services.