Last week, I wrote an essay, When Researching for Tomorrow, Pay for Today’s Help, in which I proposed that 30% of any dollars used to fund disease research be spent on services to help family caregivers today.
In response to my essay, I received this message through Twitter:
“Excellent article abt funding research to find a future cure, but nothing abt funding research to help today’s carees and caregivers.”
This message perplexes me a bit. Funding research today will help tomorrow’s family caregivers, rather than those today. My concern is that too much is spent on research which may or may not help those in the future rather than spending more on services to help those in need today. But, in the spirit of a lovely Wednesday, I will rewrite the question to read:
“Denise, how do you feel about money spent to research the caregiving experience?”
Great question!
First, let’s take a look at the purpose of disease-based research versus the reason for researching an experience, like caregiving. Pharmaceutical companies and academia research a disease in order to find treatments (like medications) and a cure. The focus on researching an experience is different—the goal is to find an understanding, a coping technique, a helpful strategy. Researching a disease is about finding a solution. Researching an experience is about making it better.
Let’s also separate the difference between market research and academic research. I’m all in favor of market research about caregiving and family caregivers. Market research creates better products and services. Today, market research can be done fairly quickly and frugally. For instance, I sponsor an Annual Family Caregiver survey (which is really my market research about you) which costs me some time and a little bit of money. It’s impact, though, is great as I create webinars and support systems that you want.
On Monday, I posted a notice about a company interested in learning about your experiences with personal health records. The company approached me about capturing your experiences through a survey. I’m happy to help, I said, as long as you offer an incentive for those who complete the survey. So they did. I love market research for this reason: You get an instant pay-off (a gift card or, in the case of my annual survey, a free, 30-minute coaching session with me) and, in the near future, you’ll have a better product or service to use in your caregiving experience.
National Alliance for Caregiving does regular surveys of the family caregiver experience. The survey of family caregivers, most recently done in 2009, gives us great data: The number of family caregivers in the U.S., the demographics of family caregivers, and the common stressors.
So, let’s take a closer look at the research academia focuses on for family caregivers.
This is where I instinctively illicit a loud and heavy sigh.
My concern about academia researching caregiving is that money is spent to find out what common sense will already tell us. For instance, consider this recently-released research, as reported by PsychCentral.com
Adult daughters caring for a parent recovering from stroke are more prone to depression than sons, Marina Bastawrous told the Canadian Stroke Congress Aug. 16. The congress is co-hosted by the Canadian Stroke Network, the Heart and Stroke Foundation, and the Canadian Stroke Consortium.
Caring for a parent who has experienced a stroke results in a dramatic shift from the usual parent-child relationship. “Stroke can be particularly challenging for families,” says Bastawrous, a masters degree candidate at the University of Toronto. “Taking care of elderly parents can bring out family strengths and family weaknesses.”
Don’t we already know this? The article concludes with the researcher’s recommendations, learned as a result of the research:
To remove some of the strain − financial and emotional − innovative thinking is required. “Our healthcare system is not sustainable in the face of rising costs,” says Dr. Cameron. “We need to plan.”
Here’s what Dr. Cameron envisions as part of this plan:
• Create work environments that support family members caring for stroke survivors (e.g., caregiving leave).
• Recognizing that family members perform many caregiving duties after the stroke survivor returns home but receive little if any training; hospitals must train family members for their caregiving role.
• To ensure post-hospital care plans incorporate the unique circumstances of the family, caregivers should be recognized as members of the care team.
“Family caregivers are critical to stroke recovery and typically assume major care roles that are frequently costly to their financial, social, and emotional well-being,” says Dr. Antoine Hakim, spokesperson for the Canadian Stroke Network. “Innovative new ideas to support their balance and quality of life is essential.”
Does the research and its related recommendations tell you anything new?
This is when I say: Please! Spend this money on direct services, like home care, and support services, like counseling and coaching.
At times, I’ll post notices on Caregiving.com for research participants.My rule is this: I’ll help recruit participants IF participants receive a direct benefit today.
In May, for instance, I shared a call for research participants from Brown Medical School and Rhode Island Hospital; researchers need 264 family caregivers of persons with dementia to participate in a study funded by National Institute of Nursing Research. I shared this notice with you because of this:
Participants will complete an initial screening and baseline assessment visit at Rhode Island Hospital. All family caregivers will receive a resource packet and telephone support calls from a trained therapist over a period of six months. They will also complete four telephone-based assessments interviews during which they will be asked questions about their mood, health and feelings regarding their caregiving responsibilities.
Obviously, telephone support calls from a trained therapist will be incredibly helpful. I want you to be able to participate in a program that will support you.
I wonder, though: Can’t we just use our common sense to know this? Can’t we just say: This will help. So, let’s do it.
In 1997, I had been working with family caregivers for about seven years. I felt that most family caregivers were plagued by similar questions: Why me? Why now? What now? I wanted to help family caregivers find their answers. I wanted them to be prepared for the reality of their future while walking into their future with hope. I also wanted to help in a way that one person (me) could help. How could I effectively answer the questions so many have?
I thought about the staging of Alzheimer’s disease and the comfort it provides to family caregivers. The idea that a complicated disease process could be staged eased some of the family caregiver’s worry about whether a behavior or experience was normal. It also helped prepare the family caregiver for what’s next.
Hmm, I thought, why not stage the caregiving experience? So, I sat in my cubicle at my day job on a slow day and crafted four stages of the caregiving experience. I posted the four stages on my website and asked for feedback. A year later, the four stages became The Caregiving Years, Six Stages to a Meaningful Journey, and has graced my website ever since. (It’s also available as a workbook for purchase.)
Soon after (I can’t remember the exact year, maybe 2000?), I manned a booth at an American Society on Aging annual conference in order to share information about my website and The Caregiving Years concept. Social workers and other professionals working with family caregivers stopped by my booth to learn about my work.
The most-frequent question I received about The Caregiving Years was: Do you have research to back up your stages? (And, by research, they meant: Do you have statistics which prove your concept?)
Well, no. I just used my common sense. I listened. I reflected. I applied what family caregivers told me.
A few years later, at another major conference, a researcher well known at the time for her work with family caregivers and employed by a large state university gave the keynote session. Her presentation focused on how she staged the caregiving experience.
Oh, no, I thought. She’s got research. What if her research disproves my concept?
I listened to her keynote. And, at the end, I couldn’t make heads or tails of her stages. She had charts and graphs and data. She had overlays for her graphs and pies for her charts. It was so complicated, I couldn’t get it.
I learned, as a result of that keynote: You can’t put common sense into a chart or graph. Because when you do, you take away what works—common sense.
Last week, a family caregiver recently sent me a email telling me his caregiving story by using The Caregiving Years concept. Another recently sent me a joyous note exclaiming she had just graduated into the fourth stage of the concept. Another family caregiver just reprinted one the stages on her personal website. And, a terrific book, “Handbook for Mortals: Guidance for People Facing Serious Illness” by Joanne Lynn, will include a synopsis of the concept when its revised edition is issued next year.
And, that’s my beef with academia researching the caregiving experience. Do we need to spend any more money to research that caregiving is stressful? That family caregivers need support?
Again, I go back to the need for services to help family caregivers today. I attended a presentation about 10 days ago given by a director of a large Area Agency on Aging. The agency provides services to seniors as well as family caregivers. The director said the calls to her hotline about elder abuse is up 100%. And, it’s family members involved in the abuse. A tough economy, the director said, causes families to combine households; older adults now reside with their adult children. The stressors of the combined household and the caregiving responsibilities are taking their toll.
So, I ask: Do we need more research on caregiving?
Let’s intervene to help these families now. We know what will help (counseling, home care, adult day services, support groups). Why in the world do we fund more research when the crisis (family caregivers need help!) escalates and cuts for community services increase?
But, you’re the expert. What do you think? Cast your vote in our poll (which cost me nothing to create and sponsor!) below.
I completely agree! Every time I read “research” about caregiving, I think they could have asked any one caregiver and we could have told them that. I find the advice given based on the research to be one more thing to make me feel guilty. I already know I’m supposed to take time for myself. That’s so much easier said than done! Why do we need research to tell us that? And how about if they look at a family caregiver’s actual life to see what it’s like and where they are supposed to be fitting in time for themselves! I’ve found that when it comes to research about caregiving, the best thing I can do is not read it.
I don’t mind some “research” per se as long as it involves talking to actual caregivers. In any given support group category there are all sorts of theories, papers, books, articles and now blogs purporting to know what a given constituency needs. However, unless/until you’ve walked in my sandals…. And even if you have walked a similar path every journey has unique aspects to it. One can sympathize but I’m always hesitant to say “I know what you’re going through…” because in truth I probably don’t know. This is where “research” helps. It can fill in the gaps and offer real world experience from a wide variety of situations. The emphasis though has to be on “real”.