Early-onset Alzheimer's and Young Adult Family Caregivers
When we hear the words “family caregiver,” most of us picture a middle-aged or older adult, typically a spouse or grown child. While those demographics do describe the majority of family caregivers, an increasing number of caregivers are much younger. Nearly 1.4 million children and teens between the ages of 8 and 18 are believed to be acting as caregivers for someone in their family.
According to the American Association of Youth Caregiving, 72 percent of these young caregivers help care for a parent or grandparent with a chronic disease like Alzheimer’s. When the young person is caring for a family member with Alzheimer’s, it is often because their loved one has early-onset Alzheimer’s. This form of the disease can impact people as early as their 40s and 50s.
A Day in the Life of a Young Caregiver
Caring for a loved one can have a long-lasting impact on a young person. According to the Bill and Melinda Gates Foundation, 22 percent of high school dropouts say they were forced to leave school because of their caregiving responsibilities.
If you are wondering what a day in the life of a young caregiver looks like, two projects in recent years can provide insight.
The documentary Much Too Young follows young caregivers throughout their day and highlights the struggles they face and the sadness they feel. The documentary also has a virtual reality app you can download, MTY VR, to witness firsthand what it’s like to be both a young caregiver and a person living with Alzheimer’s disease.
Another film that accurately portrays a family’s struggle with early-onset Alzheimer’s is Still Alice. The film depicts the life of a renowned linguistics professor at Columbia University, Dr. Alice Howland. From the time she begins to experience difficulty finding words to getting lost on her daily run, Alice’s three children watch as their mother’s condition progresses. You witness their efforts to keep her safe and preserve her dignity.
How to Help a Young Caregiver You Know
If a young person you know is having a difficult time juggling the demands of caregiving with their school days or college life, there are steps you can take to help.
- Stay in touch: Isolation is a common cause of depression in caregivers, especially those who are caring for a loved one with Alzheimer’s. For young people, the perception that they are missing out on important life events and milestones can make the risk for depression even higher. Try to stay connected with the young family caregiver and encourage others to do the same. If you can’t be there in person, check in via text message, Skype, phone calls, and email. Make sure they know they aren’t alone.
- Adult day and respite services: Younger people might not understand all of the senior care options that are available and the funding resources that can help pay for them. If you aren’t aware of them either, spend time researching on the family’s behalf. Your local agency on aging is a good first stop. They typically know about adult day programs and respite care at nearby assisted living communities. These can help young caregivers maintain a sense of normalcy in their life.
- Online support: Today’s tech-savvy younger generation might find the support of an online caregiver group to be beneficial. They can connect with people their own age who are facing similar struggles caring for a loved one. The American Association of Youth Caregiving has a wide variety of online resources, as does the Family Caregiving Alliance.
To learn more about early-onset Alzheimer’s, we invite you to listen to memory care expert Rita Altman on Episode 5 of The Senior Caregiver podcast, Navigating the Journey with Alzheimer’s. Rita gives tips for communicating and a reminder to see your loved one as a person, not just the disease. Tune in to learn more.