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The Covid-19 pandemic provided insight into existing gaps in programs for mental health and well-being across generations. As a pre-teen during the pandemic, I saw an increase in household responsibilities among young people, including caring for loved ones in New York. Providing care to loved ones in an environment where access to support services was ever changing due to Covid-19 and the landscape of education was extremely stressful.
I cared for my grandmother who recently passed away from Alzheimer’s Disease. My mother had cared for her grandmother with Alzheimer’s Disease, too, often going to her house on weekends to spend time, clean, cook, and help out in any way she could.
Policy decisions have not kept up to include young caregivers. Caregivers below 18 have been left out of needed legislation, formal support programming and respite even in this post pandemic world.
Reflecting on this notable absence, faith-based organizations have the opportunity to be a catalyst for change and work with governmental agencies, private and public sector organizations to increase resources for teenagers caring for loved ones with chronic diseases.
The rates of dementia and chronic disease are on the rise especially in marginalized communities. In addition, there is an increase in multigenerational households where teens play a pivotal role in caregiving – a fact highlighted by the pandemic. New York has programs that support caregivers, including families under the Consumer Directed Personal Assistance Program (CDPAP). The program gives empowerment to families; however, it is directed to those over the age of 18. A large step into recognizing the heterogeneity of caregiving and the need to support different caregivers is outlined in the National Strategy to Support Family Caregivers. The strategy here is that local/state/nonprofit organizations will be aligned to direct recommendations to the federal government. This is an incredible coordinated effort – however, as noted the caregiving youth is often left out of the data for many reasons. The largest study looked at young adult caregivers ages 18-25 which still does not touch upon needs of people under 18 to be recognized and supported. Larger studies are needed to understand the nuances of being a youth caregiver especially in the areas of mental well-being.
How many of you as teenagers provided support to your loved ones in the form of respite, meal delivery, transportation accompaniment, or technology support for a grandparent? Have you been embarrassed to share your frustration with your friends about how difficult it was to bathe and dress your loved one in order to attend an event? All of this while struggling, especially during the height of the pandemic, to keep up with school work, sports, and your newspaper route or restaurant job. Research has shown that the frequency and level of intensity of caring for loved ones as a youth is related to higher levels of developmental risk in many domains including – social, physical health, and academics.
A systematic approach to understanding the needs of the caregiving youth is needed in order to tailor interventions. Utilizing faith-based organizations as a coordinated approach is one way to help us feel understood and share the best strategies.
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