How do we help caregivers who don’t know they are caregivers?

january 13, 2023

by Adele Crouch, PhD, RN, AGCNS-BC

Alexandra Drane and ARCHANGELS are on a mission: to reach and support unpaid caregivers, even those who don’t identify themselves as caregivers.

In a recent webinar in the Caregiving Now series, Ms. Drane highlighted startling statistics about caregiving and the toll it can take. As a nurse researcher, I love good stats; however, that is just a piece of the caregiving puzzle. As Ms. Drane reminded us, (citing Paul Brodeur): “Statistics are human beings with the tears wiped away.”

Those statistics reflect an alarming prevalence of psychological stress among caregivers, exponentially worse for the so-called “sandwich generation” who are taking care of children and older adults. In recent work with the CDC, ARCHANGELS found that more than half of sandwich generation caregivers had active suicidal thoughts in the past 30 days, as shown below:

      Prevalence of active suicidal thoughts within the last 30 days:

• Those with no caregiving responsibilities: 5%
• Those caregiving for someone under age 18: 0%
• Those caregiving for someone over age 18: 0%
• Those caregiving for someone under 18 and someone over 18: 52%

ARCHANGELS’ Approach

ARCHANGELS is a national organization focused on reframing how caregivers are seen, honored, and supported, using data, stories, and partnerships. They produce research to increase awareness of caregiving, assess the intensity of caregiving and stressors through the Caregiving Intensity Index^TM and link caregivers to existing resources to meet their unsupported needs.

As Ms. Drane describes it, they do this by being “omni-channel, shameless hustlers.”

Caregivers are everywhere. The latest data indicate that about 43% of us are caregivers, up from 21% in 2020 (before the pandemic). We most often think of a caregiver as someone who physically takes care of a family member, such as a wife taking care of her husband who has dementia and needs help with everyday tasks. While this is a classic example of a caregiver, there are so many other ways caregiving can look.

• Do you check on your neighbor to make sure they are doing okay? Do you offer to shovel their walk? You’re a caregiver.
• Do you drop your kids off at school and ensure they are fed when they return home? You’re a caregiver.
• Do you coordinate your child’s after school activities while also coordinating your parent’s relocation to an assisted living facility? You’re a caregiver.

This is important because as Ms. Drane said, “We (caregivers) can’t get support if we don’t see ourselves in that caregiver role.” In fact, half of all caregivers do not even respond to the term. In her research, Ms. Drane found that caregivers describe themselves with the following words:

Caregivers are everywhere, so we need to meet them where they are. That’s why ARCHANGELS is “omni-channel.” They meet caregivers where they are through engagement with retailers, television, work, social media, advocacy in the community, direct to consumer advertising, organizations such as the YMCA, and faith-based organizations, to name a few.

Okay, once someone has had an aha moment, and realize they are a caregiver. What’s next? The next step is a self-assessment to measure how caregiving is affecting someone’s well-being and how well they are coping with potential stressors such as money and family disagreements. This platform, the Caregiving Intensity Index^TM, takes two minutes to complete and produces a “score” of green, yellow, or red. Being ‘in the red’ means that they may be carrying a heavy load with inadequate support. In one recent ARCHANGELS campaign with perimenopausal women caregivers, 33% were in the red, including 60% of those in the sandwich generation. The platform also provides links to existing resources that address specific stressors affecting a caregiver’s well-being.

Be a resource…don’t wait to be asked. In a vivid and poignant analogy, Ms. Drane compared overwhelmed caregivers to a drowning person. “Drowning does not look like drowning…unfortunately, what that looks like is they will just sink, hands by their side, quietly underwater.” Most caregivers, she said, are not waving their hands in the air yelling for help. We need to throw the life buoy, reach out and put the life buoy in their hand. She ended with practical advice on how we can all support caregivers, including:

• Be a ‘red’ phone – a person to call when someone needs help or are ‘in the red’.
• Keep an eye out for individuals who may be in a caregiving role and may need help.
• Go to your employer and request they share any caregiving resources they have. You may be surprised at the support your employer has in place already.
• Share your caregiving story with someone. Help them to identify themselves as a caregiver, determine their intensity score, and seek resources if needed.

As a nurse I have always valued caregiving; however, this discussion really opened my eyes to the vastness of unpaid caregiving and the need to support those carrying that heavy burden.

Register today for our next Caregiving Now seminar on January 18, 2023, 12:00-1:00PM ET, featuring Rabbi Richard Address and Reverend Tyrone Pitts. We’ll delve deep into the spiritual dimensions of caregiving and how to mobilize faith communities to support caregivers.