(Editor’s Note: I am republishing this commentary, which originally appeared on Caregiving.com on March 1, 2005, as background for today’s post, “A Theme for You.” Note that, in my commentary, I refer to “care recipients”; we began using the term “caree” in 2010.)

Our annual survey says, again, that only 66% of family caregivers are satisfied with services in their communities. Denise Brown takes a politically incorrect look at why some communities come up short when it comes to helping family caregivers.

Every year, visitors to Caregiving.com and subscribers to Caregiving! newsletter complete our annual survey, which asks for feedback on their experiences at home, in the family and within their community. Every year, the survey asks this question: Are you happy with the services in your area?

This year, 66% of respondents indicated that they were satisfied with the services in their areas, down from a one-time high last year of 75%. The satisfaction numbers from previous years were: 66% in 2000, 68% in 2001 and 65% in 2002.

If you think about satisfaction in terms of a grading on a report card, then our communities are not even getting a D–consistently.

What’s interesting about the consistent failing of our communities is that, more than ever, community organizations have moneys available specifically to help family caregivers. Since 2001, federal moneys have been ear-marked for family caregivers in communities throughout the country through a program called Family Caregiver Support Program, developed by the Administration on Aging (AoA) of the U.S. Department of Health and Human Services (HHS). (To learn more the program, please visit here.)

So, if money is available to help, why doesn’t it? My thoughts, as they relate to my experiences.

Let’s Research How Well Research Impacts Caregiving
In 2002, I attended the Third International Conference on Family Care; the purpose of the conference was to gather professionals from around the globe to share information about programs and services that help family caregivers. A large contingency attended from Australia; this contingency included professionals working with family caregivers and the family caregivers themselves, all who participated in presentations that highlighted the programs and services available in their country.

The contingency from the U.S. consisted of program managers from Area Agencies on Aging (recipients of the Family Caregiver Support Program funding), other community-based providers, and researchers. No U.S.-based organization brought a family caregiver. Presentations from the U.S. focused heavily on research. During one luncheon keynote address, a U.S. researcher gave a particularly confounding and confusing analysis of her latest research, research meant to help us reach family caregivers.

At the end of the presentation, a member of the Australian contingency turned to one of my colleagues and asked him: “Tell me. Do you do anything in the U.S. to help family caregivers other than research?”

After the luncheon, I attended a break-out session during which one of the presenters immediately shared a personal experience that contradicted the keynote presenter’s research findings. The room almost shook from all the head-nodding; “That’s right,” we all agreed.

I am a believer in research, research within reason, that is. Research is a critical component to program development for family caregivers. Initial research in the mid 1990s showed just how many households (one in every four) are involved in the caregiving experience. Subsequent research has proved that spousal caregivers, in particular, are at a greater risk of dying before their care recipients—just because of the stress and fatigue of the caregiving experience. And, effective research will continue to shed light on needs of family caregivers. In particular, I’m interested in research that helps me understand some trends that I currently see: That one family caregiver cares for more than one care recipient, that care recipients stay home longer and longer (rather than being placed in a nursing home) because of a family member’s loving care, that early diagnosis of a chronic illness means more and more care recipients are under 60 years of age (many services that help are available for persons 60 years of age and older).

Every year, in my annual survey, I ask respondents what’s the hardest part of caregiving. Year after year, they say the hardest part is finding time to socialize with family and friends. Family caregivers also say they struggle to find affordable help, as well as to get help from other relatives. There’s no time and no help—and that hasn’t changed since 1996, when I published my first survey results. Funding continues to be available for research. Where are the funds so that family caregivers have access to respite care—qualified, affordable help—so they can actually take some time for themselves, if only to run to the grocery store?

Unless It’s Really Hard To Do, It Probably Isn’t Right
Last week, I was contacted by a researcher affiliated with a large university. She wanted to list my web site as a resource for other researchers and family caregivers. She sent me an e-mail asking me about my “sponsorship.” I wrote back, asking for clarification. “What do you mean,” I asked, “by my sponsorship?” Her clarification: She wanted to know on what research I had based the information I created and posted on my site. Hmmm… I just wasn’t even sure how to respond. I responded the best I could, which was: My day-to-day experience listening to family caregivers since 1990, coupled with my gut, is my research.

Her concern? She worried that other researches would feel that she was endorsing my web site and that they would question her about my research. I just couldn’t help but shake my head. Why are we making this so hard, I wondered? If we go through this just to let someone know that a web site called Caregiving.com is available, what must it be like for family caregivers to actually get help?

A write-in answer to our annual survey probably says it best:

“Have people who would orient you on how to deal with red tape.”

Other family caregivers wrote:

“A better information system, to let caregivers know what is out there, what needs are being met, what needs are being considered, what the progress is, what remains to be addressed. I’d like to see a bit of a friendly co-op type arrangement like there used to be when I was raising my child as a single parent. It would be wonderful if caregivers could get together and informally help each other without all the bureaucracy of the overworked and underpaid agency representatives. Isolation is the biggest problem. Even though I’m not alone, and I know that I’m not, the maze to finding what I need is hydra-headed and frequently feels insurmountable.”

“The Dept. of Aging adequately staffed for the cities’/counties’ elderly population. Funding for communication and computer technologies to speed-up the processing of the endless paperwork. Information required by and between agencies would be streamlined and shared online (with printouts available to all who don’t trust computers or fear loss of information). State and county agencies open longer hours (evenings and Saturdays) to benefit/accommodate working caregivers by offering job sharing and flex hours to their employees.”

It’s Not Us, It’s Them
The day after being contacted by the university researcher wanting me to have conducted research in order to recommend my web site, I received a phone call from  another large university. The university was organizing a conference for professionals in its state who work with family caregivers; would I be interested in giving the keynote speech?

Of course, I said, and agree to a reduced fee, reduced out of respect for the very limited budgets of the professionals who will attend. During the course of our discussion, I asked what messages the conference would like the keynote to deliver. Many agencies and organizations had developed programs for family caregivers, I was told, but were having difficulty attracting family caregivers to these programs because the family caregivers don’t self-identify. And, the conversation continued, many agencies are very territorial about their programs; the hope was that the keynote could inspire the attendees by encouraging them that they all make a difference and the family caregiver does not care where a program comes from, only that help is available.

Ahhhhh, I thought, the two biggies that paralyze agencies: 1. The belief that family caregivers must knock on their agencies’ doors on their own accord and unless they do, cannot be reached; 2. The belief that they are the only agency that can provide helpful services and programs.

Let’s look at No. 1 first. Sometime in the late 1990s, the idea became prevalent that agencies experience great difficulty in reaching family caregivers because these family caregivers don’t self-identify, i.e., family members caring for an aging relative don’t believe they are “caregivers” so don’t search for caregiver programs. Funding was given for research to prove this very point. (You’ll find the research here; scroll down to Findings on Communicating with Family Caregivers.)

This is an interesting problem—using the word “caregiver” to describe programs for family caregivers who don’t call themselves caregivers. I knew this when I started my business in 1994, which is why, from the very beginning, I described my products as being “for persons who care for aging relatives.” Worked for me—without spending any money on research.

In 2002, I found myself sitting in a task force meeting, discussing the possibly of working with a national organization to hold a local town hall meeting for family caregivers. During the meeting, the idea, again, was discussed about the lack of family caregiver self-identification as a barrier to family caregivers participating in programs. I couldn’t contain myself any longer. I said: “I believe that this isn’t a problem we should put on the family caregiver. This isn’t their problem. This is our problem of word choice. And, it’s our marketing problem.”

Silence. Stares. The marketing professional person for the organization that received funding for the research about family caregiver self-identification countered with an interesting argument: Their research results, she said, prove that a family caregiver receives better treatment in a doctor’s office if they do, in fact, state that they are a family caregiver.

Because she was quite heated in her follow-up to my comment, I thought it best to let the issue drop. And, her insight was helpful to know. I wondered, though, if all that research money was worth that finding. What if we had used that research money instead to fund what family caregivers really, really want: More affordable, qualified help. What would the impact be on a family caregiver then?

Because, in my many years of listening to family caregivers, no one has ever said to me: I would like to know what to call myself in order to get better treatment in a doctor’s office. And, quite honestly, I haven’t heard a family caregiver request more funding for research on the caregiving experience since 1998. Requests—cries, really—for more help, more help in the home where care is provided, continue.

If I had a dollar for every time I heard an agency representative tell me that they can’t reach family caregivers because family caregivers don’t self-identify, I would be debt-free (hurray!). I can’t imagine any business using this argument to explain why it can’t (or won’t) reach its customers. Case in point: I became a professional life coach last year. As I was completing my training program, I joined a listserv of professional coaches. Because coaching is a new service offering, much of the discussion between members of the listserv involves marketing: Finding clients, attracting the right client, building a base of clients. Not once has a coach said: “Well, people don’t self-identify as needing a coach, so we can’t reach clients.”

I worked with family caregivers in 1990 and 1991 in Hunterdon County, New Jersey, managing that county’s state-funded respite care program (New Jersey Statewide Respite Care Program). Fifteen years ago, we had such a demand for the program that we worried about having a waiting list. We never advertised.

In 2000, the New Jersey Statewide Respite Care program had a budget of $6.75 million through which it provided respite services for 7,575 participants.  In 2002, The National Family Caregiver Support Program allocated states $129,192,000; states, in turn, used that money to provide respite services to 76,000 family caregivers. New Jersey had 5% of the national budget—but was able to provide services to 10% of the number of family caregivers of the national program. (See end of article for links to reports on both programs.) Another way to look at the figures: The national program provided respite services to 1,520 family caregivers per state. New Jersey alone served 7,575 program participants. (Update: On February 1, 2012, I took a look at the numbers again. The data I reference here was taken from a 2000 survey of the Respite Care program. The number of participants is actually the number who participated in the program between 1993 and 1999, rather than the number who participated in 2000. I’m currently looking for better figures for a comparison between New Jersey’s program and the national program.)

It’s disconcerting to hear community-based agencies that have received funding for family caregiver programs continue to say that, regardless of having the money needed to create programs for family caregivers, family caregivers still don’t use their programs.

And, this is the fault of the family caregiver???

Providing services to family caregivers is hard work. I’ll be the first to admit it. To keep my business in business, I’ve worked other jobs, taken on debt, worked long hours. But, reaching family caregivers is my hard work. Family caregivers have enough of their own hard work without me adding to it.

Today, family caregivers are everywhere. Speak their language. Create programs that help them. Go where they go. They’re customers of your program. Treat them as such. Then, you’ll find each other.

It’s OUR Program
In the past, many agencies (locally and nationally) were very territorial about serving the needs of family caregivers. They didn’t want to work together, they didn’t want to pursue collaboration in order to avoid duplication, they didn’t want to explore the possibility that expertise outside their agencies exists. The result has been a maze of programs and services that provide pieces of the puzzle. And, often, those pieces never fit together.

Recently, I have seen some gains in collaboration, particularly between non-profit and for-profit organizations. I could see some real progress. The news that a university wanted to me to address those territorial concerns in a keynote address made my heart sink. When will we get past this, I wonder?

When I first started my business to help family caregivers, I was one of perhaps five (four were new) national organizations (non-profit and profit) devoted to helping family caregivers. Because only five of us existed, I thought it would be a good idea to introduce myself to the other three (the fourth already knew me; we referred family caregivers to each other) and suggest that we consider ways to work together. Well, I just didn’t have much luck connecting with the organizations.

So, I decided to concentrate on my own work, putting my nose to the grindstone, so to speak. When the federal moneys became available, in 2001, I couldn’t think of better news. I have products that help family caregivers; surely, these AAAs won’t recreate the wheel and will look to those who currently work with family caregivers.

No such luck. The wheel is recreated, over and over. The town hall meeting is just one example.

Harry Wiland and Dale Bell produced a PBS special called “And Thou Shalt Honor” which aired nationally in October 2002. The special was a huge success; Wiland and Bell capitalized on their success by creating town hall meetings. (In 2002, hosting town hall meetings was all the rage; it was another national organization whose task force meeting I attended.) The cost of a hosting a Wiland-Bell town hall meeting? According to its web site, “corporate sponsors contribute $75,000 to participate fully in market exposure of the Town Hall Meeting Road Show; one or more Venue Sponsor organization(s) to contribute $50,000 (collectively) to the conduct of the Town Hall Meeting in their locale.”

I’m not sure why and when the idea for the town hall meetings took hold. I think a town hall meeting certainly has its place, although the idea seems to have disappeared as quickly as it appeared. I also think that $125,000 could pay for 10,000 hours of home health care (at an average of $12.50 an hour) or 10 hours of home care for 10 weeks for 100 family caregivers.

I’m just not sure why organizations commit $125,000 to one night (and to paying the salaries of Wiland and Bell) rather than to helping 100 family caregivers for 10 weeks.

As the family caregiver issue became hot, more and more task force committees were created to discuss ways to help family caregivers. Organizations even received funding to teach other organizations how to form coalitions to help family caregivers, i.e., funding became available to sponsor meetings about how to hold meetings about helping family caregivers. (You can learn more about these coalitions here.)

I did develop a nice relationship with one of the organizations that started when I did. I did consider selling my web site to this organization in the fall of 2003. I was burnt-out from working other jobs to keep my business afloat, from trying hard to form relationships with other organizations that help family caregivers, and from worrying constantly about whether or not I could pay my bills. When I approached the this organization about perhaps buying my web site, I was told it had no value. At the time, I was particularly worried about my online support groups; I really didn’t want to leave the members in a lurch if I did go out-of-business. When I asked if the organization would take care of my online support groups, I was told: “Sure, we will. But why would someone want to have something like that? You can’t make any money off of those.”

Oh, my. End of discussion.

The Dance of Funding
Some of the Area Agencies on Aging (AAA) that have received federal funding have done a tremendous job in helping family caregivers. I heard from an AAA last week who had received funding to help male family caregivers; these male family caregivers told the agency that they needed help with cooking. So, the agency created a series of cooking classes for them (now, that’s cool). I’ve spoken at conferences sponsored by AAAs (the one in Springfield, Ill., comes to mind) that have generated great attendances to their caregiver conferences.

The ones who haven’t, though, really haven’t.

One AAA that I know has allocated almost one-third of its family caregiver funding, according to a source, to its Home Delivered Meal program. That would be a no-no, a misallocation of funds. The agency does this out of deference to the city’s mayor, who insists that as much money as possible fund its hot lunch program for seniors. Certainly a worthy cause. But, at what price to family caregivers? I hope the remaining 70% are effectively spent on family caregiver programs, but I’m just not convinced.

I worry that some AAAs have just rolled family caregiver funding dollars into their existing programs, believing that their existing programs meet the needs of family caregivers. (Note: They don’t.)

AAAs are unmatched in their ability to provide services to older adults. AAAs were created with that purpose—to serve older adults in our communities. Meeting the needs of older adults varies greatly from meeting the needs of the family caregiver. Two different clients means two very different approaches.

The Bottom Line: Funding and Fear
I do feel it’s important for organizations that reach family caregivers to share how they do that. So, from 1999 until 2002, I presented at an annual aging conference about my online support groups. This past fall, I held two free teleclasses for professionals on how to start online and telephone support groups. I share how easy, cost-effective and manageable these types of support services are. I offer all the information needed to start these support services. I explain why family caregivers like these kind of support services, especially the online support groups: The groups are always open, are easy to get to, and easy to use. They’re a busy, overwhelmed, sleep-deprived family caregiver’s best friend.

I’m always taken aback by a common question when I share this information: What’s your funding source, the professionals want to know. No matter how many times I’m asked, it’s still such a surprise. I don’t have a funding source for my online support groups. When I first built a web site, I learned what keeps visitors coming back: A community. So, I worked on building a community, which meant online support groups. Family caregivers benefited from the groups. Why would I need funding?

What’s particularly frustrating is the implication, from agencies, that without funding, programs that work won’t be considered.

A few months after the free teleclasses, I had an interesting discussion with an attendee of the teleclasses. She and her colleagues really enjoyed the teleclasses, she said, but they probably won’t add the services I suggested. This isn’t an uncommon reaction, she said. We’re afraid to do these things, she explained, so we don’t.

We Don’t Have Customers, So We Don’t Need Customer Service
Last summer, I contacted a program manager for the family caregiver program in upstate New York on behalf of a member of one of our online support groups. “Beth,” the family caregiver, was at her wit’s end trying to get help in caring for her father (who was very verbally abusive). I called the AAA in Beth’s area, identifying myself (I’m Denise Brown from Caregiving.com, calling on behalf of a member of one of my online support groups, who is in a crisis). The cold welcome I received, from the receptionist to the program manager, still sticks with me. A care manager finally contacted Beth, but only after I did some arm-twisting.

In responding to my annual survey, Beth wrote about her experience in trying to get help:

“I feel the health care professionals need to support the caregivers, in means of group counseling of some kind. I live in Catskill, N.Y., and I got rejected many times when asking for help. I would always be told my father does not qualify because I have him living with me so that means I can take care of him as he is not alone. This is not fair to me, as I had no rest. I was on the go with him 24 hours a day for 11 months.”

Compare my phone call to the AAA with one I made to a privately-owned organization that manufactures clothing for disabled persons. Peg, another member of that same support group, was having a terrible time with her mom, who undressed to her birthday suit regularly. I contacted this company, asked for help and, within five minutes, was giving Peg’s address to the company president, who was sending Peg a pair of one-piece pajamas with a zipper in the back (so her mother couldn’t remove the pjs) at no charge.

Again, the staff at the AAA received funding to help family caregivers like Beth. The manufacturer doesn’t, choosing to instead to win its customers with effective customer service.

And, let’s not forget that the AAA funding is actually our tax dollars.

Resources:

2002 Stats from AOA on Family Caregiver Support Program (Click on 2004 Report): http://www.aoa.gov/AoARoot/Program_Results/Program_Evaluation.aspx

2000 Stats from New Jersey Statewide Respite Care Program: http://www.cshp.rutgers.edu/PDF/Respite_report.pdf

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