We Need to Invest in Family Caregivers
So much funding supports research rather than family caregivers.
“Caregivers in general, especially new ones, are very uncertain about what they need to do, how much and what kind of things to do… (T)hey feel guilty about not doing more.” ~ a family caregiver
“My mom is a huge fall risk, and I can't keep her safe.” ~ a family caregiver
What’s the difference between these two comments from family caregivers?
About 23 years.
The first comment comes from a survey I did of family caregivers in 1997. The second comment comes from a family caregiver who completed our on-going stress survey in 2020.
In 23 years, we have yet to truly change the caregiving experience.
In 1996, I launched my first online support group so that family caregivers could conveniently connect to support when they had a free moment. An in-person support group can be a great solution as long as the group convenes when you can attend. Of course, during our pandemic in-person support groups paused with hopes that they will re-launch at some point.
This morning, I realized that Facebook, which now houses thousands of caregiving support groups, is probably the company that most transformed the caregiving experience.
Facebook had what I didn’t (lots of money and resources) to make it possible for anyone to easily and quickly start a group to connect with anyone in a similar situation. You can join a group for those who care for parents, for those who care for a family member with a rare disease, for those who live in your community. You can connect with fellow family caregivers all over the world and throughout your neighborhood. In many ways, Facebook normalized the caregiving experience because it scaled the experience through its billions of members.
What does it say that Facebook, which never directly marketed to family caregivers, became the winner in terms of supporting family caregivers?
The caregiving space could have created programs and services that help family caregivers. But the priority became using money for research rather than help that helps. In February, I read about two research caregiving projects totally more than $5 million:
One received $2.14 million to study extended family caregivers of persons with dementia
One received 3.5 million to provide a grieving support group on Facebook so that grieving family caregivers can post photos
I can’t imagine how much money over the past 23 years has funded projects which literally study what’s already been researched or simply research what common sense would know to be true.
Imagine if we used $5.64 million to send $500 to family caregivers in need. That money could have helped 11,280 family caregivers with supplies, home care, medications and food.
We have failed family caregivers. Now’s the time to truly do better. We’ve spent enough on researching what we already know. We need to spend money to change the daily lives of family caregivers. We need to invest in family caregivers.
Please share your experiences about the financial impact of a caregiving experience. You also can tell us about your stress.
Please join our pilot program and receive free training on how to care for a family member. Our instructors all have a personal caregiving experience.
I share insights, including a comparison of the family caregiver caregiver experience in 1995 to today, on my YouTube channel.
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