In case you aren’t aware of it yet, November is National Family Caregiver Awareness month. I guess that makes it official. But for us, every month is a time to consider, understand and be aware of all things caregiver.
When I was a full-time family caregiver, before I founded this site, I had neither the time nor inclination to research caregiving statistics and surveys. But…for the past three-and-a-half years, I’ve made up for it. The best way for us to find out what you need, is to get to know you. Take a few minutes to read up on just who you are.
The Family Caregiver Alliance defines a caregiver as “an unpaid individual (a spouse, partner, family member, friend or neighbor) involved in assisting others with activities of daily living and/or medical tasks.” Paid or formal caregivers provide care in-home and in a care setting, such as a residence or rehab facility.
Statistically, there are some astounding numbers to be considered.
- There are 65.7 million adult family caregivers who make up 29% of the adult population of the United States.
- 52 million of these caregivers provide care to adults, aged 18+, who are sick or disabled.
- 43.5 million of them care for someone 50+ years of age.
- 14.9 million care for someone who has Alzheimer’s or dementia.
- LGBT adult caregivers are a bit more likely to have provided care to an adult friend or relative in the past six months—21% vs. 17% of their heterosexual counterparts.
- Caregiver services were valued at $450 billion per annum in 2009 and this will likely continue to be the largest source of long-term care services as the 65+ population in the United States will more than double between the years 2000 and 2030.
There’s no room on the page for (and you don’t have the time to read) all the information that’s been gleaned from studies conducted by so many sources. But…
- More women than men are caregivers – 66% in fact, and a third of them take care of two or more people.
- Male caregivers are half as likely to provide personal care (bathing, toileting) for a loved one, than their female counterparts.
It’s interesting to note how the gender balance shifts between age groups. Male:female caregivers are counted as just about even in the 18-49 year old care recipient pool. Among spousal caregivers 75 and older, both sexes provide equal amounts of care. In a MetLife study, both men and women are likely to be caregivers in near-equal proportions in the LGBT community.
I don’t need to show any more statistics for you to understand that not only are you not alone as a caregiver, but you’re a member of a huge and ever-growing population. Every caregiving situation is different. Though many of us can no longer hold down a job because we’re so depended on, some of us work to pay for home care. Women, especially, suffer enormous economic hardship as a result of their caregiving duties. These problems are not going away.
Emotionally and socially, the effect on caregivers’ lives really can’t be measured. Our Forums are full of stories of isolation and hopelessness. So, what can we do?
In 1981, when the Centers for Disease Control issued it’s first warning of a rare form of pneumonia affecting a small group (41) of young, gay men. Today we know it as AIDS, and there are tens of millions of people infected with the virus. We can learn a great deal from the first brave souls who founded Gay Men’s Health Crisis (GMHC). They made some noise, made the news and got noticed. They refused to take no for an answer. They made demands. When they got no response, they kept making demands. They brought about change because they understood how important community education and awareness was to their cause. Through their own devices and connections, they raised enormous sums of money for AIDS’ research and finally, the government had to acknowledge their plight and their power. Granted, the gay community mustered up a lot of very well-to-do and powerful individuals who have given millions over the past 30+ years. AIDS went from something too scary to talk about to being an international cause and it all started as a grassroots movement.
As I go around talking to people about what we do at The Caregiver Space, it seems everyone either is or knows someone providing care to an elderly parent, a child, a spouse or a friend—they just don’t know how many lives have been affected by it. I’m aware that the well-to-do members of our community rarely take on unpleasant caregiving duties themselves, but hire people to do it for them. It doesn’t mean they care any less; they just have the means to get someone else to do the work. Caregiving is a subject no one seems to want to think about (let alone discuss) until it happens to them. I get it—people don’t want to picture themselves on either end of caregiving because they know it means sickness, old age, physical disabilities and both failing health and failing mental capacity can’t be far behind. They’re scared…so they close their eyes to it and they don’t know what it’s really about until it happens to them, because no one is telling them. It’s too uncomfortable a topic of conversation.
When you consider the fact that adult family caregivers make up close to a third of the population of this country, we really wield some significant political clout. The voter turnout in the last presidential election was just over 129 million—our 67.5 million translates into a lot of votes.
Despite our numbers, many of us are isolated—either by choice or circumstance. We are often housebound and the idea of joining and becoming active in anything outside of our caregiving duties seems unthinkable. But it’s high time caregivers made some noise and made progress in getting the help we so badly need.
We provide a service valued at $450 billion and counting. Shouldn’t there be some means of compensation for what is frequently a full time job? It doesn’t matter whether you’re a Republican or Democrat—neither party is going to bat for us. I guess what I’m saying is somehow we need to band together, get recognized as the force that we are and be heard. We’re coming up on a presidential election year in the United States—what better time to flex our muscle. We’re being taken for granted. It’s not fair. It doesn’t seem just.
As I read your posts in our Forums and witness how much of a toll caregiving is taking on individuals and families, it makes me want to do something about it. My initial vision for The Caregiver Space was to provide our community with a source of emotional support and valuable information. My newfound insight makes me want to take it to another level—one that gets us the recognition, representation and compensation we deserve. When the time comes and I need your feedback, I hope that you will rally to the cause.
Right now, having a month named for us will have to serve as a source of some recognition—so Happy Caregiver Month all. Celebrate yourself and all you do for others.
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.