Kids in dementia-affected families need help understanding the disease, but most educational resources are designed for adults. A touching new website at www.aftdkidsandteens.org is a useful exception created to teach young folks about Frontotemporal Degeneration(FTD), a complex form of dementia.
Although the website was developed by the Association for Frontotemporal Degeneration (AFTD), it could be helpful to young people learning about dementia in general. Site content is divided into two sections: one part for children aged 4 to 11 — and one part for teenagers. Both include facts about the disease enriched by first-hand testimony from young people dealing with a loved one’s behavioral changes.
Since Frontotemporal Degeneration (FTD) often strikes people who are younger than most Alzheimer’s patients, it’s common for FTD patients to be actively engaged in parenting. When they display disruptive behavior like explosive anger or extreme apathy, it can create real emotional chaos for their children. Any caregiver who has watched a loved one in the throes of a panic attack or delusion knows how such situations can provoke strong emotions — from pity to embarrassment, and even rage. The site offers kids tools that help reduce the traumatic sting of these painful incidents.
One key resource is the site’s compelling trove of written and videotaped reactions from kids who have dealt with the disease. Heartfelt letters remind kids that they are not alone. Hearing the brave, honest stories of other children and teens offers young readers a sense of hope and connectedness. Site content also encourages kids to get involved with a support group — good advice for family members of any age!
To appreciate the power of the AFTD Kids Site, watch the video testimony of a teen who lost her mom to FTD. Olivia G., a 17-year old, talks about how she felt when her mother had uncontrollable outbursts in public. Her video, which also appears on YouTube, will touch viewers of all ages. We know that it’s hard to be calm and understanding in the face of dementia, but Olivia’s words remind us that love and compassion are essential resources for dealing with the disease. She gives us a poignant reminder that we need to react to dementia from a place of deep understanding. Sometimes kids say it better than we can.