Caring for the Caregiver

In my last post, I reported on some of the work of Dr. Peter Vitaliano and his colleagues to measure caregivers’ health problems. I asked him what is being done about these problems on a practical level.

“After repeated studies have documented the stress and mental and physiological health problems caregivers experience, people are finally paying attention.” Dr. Vitaliano says. “In the US, there’s more funding available for caregiver assistance, and more programs in each of the states.”

My quick search for caregiver information and assistance yielded several sites with lots of information [mostly in English]:

*US National Library of Medicine and National Institutes of Health – MedlinePlus
*US Government eldercare locator
*AARP caregiving info
*Family Caregiver Alliance
*National Alliance for Caregiving.

The amount of information on these sites is impressive, but I’m not sure it’s indicative of the amount of help actually available to a caregiver. The Family Caregiver Alliance has published the results of a two year survey of assistance for caregivers in the 50 states. They concluded that assistance is uneven in the US.

My family had some experience with this. The memory clinic at the major university where dad was treated had a social worker, but she was not able to offer any resources, support or counseling for my parents. She ran a support group, but my parents would have had to drive three hours if they wanted to attend meetings. I called the Area Agency on Aging office responsible for caregiver support in the fairly rural area where my parents lived. When I said I was calling to find out what resources might be available to my parents, the Family Resource Specialist who answered the phone first asked me to tell her where they lived. “But that’s an interfacing community!” she said. I guess that was social worker speak for “you should rely on your neighbors.” In fact, my parents’ neighbors helped with everything from repair work to dog-sitting to just checking in with Dad when Mom was at work. They couldn’t have been more supportive.

Here’s what the agency could offer:

*A one-time, six hour caregiver conference about two hours away [my mother and sister did attend]
*The once a month meeting of the local chapter of the Alzheimer’s Association
*A list of companies offering various services we could pay for.

In my parents’ state, there were some respite care services staffed by volunteers, but availability was spotty.

At a caregiver’s seminar in Florida, I learned that assistance from the Veteran’s Administration (VA) might be available since Dad had been a pilot in the Air Force. When I called the Veteran’s Administration, they said there was a long waiting list for services. My mother went to the local VA office to start the paperwork to get Dad into the system, but it didn’t sound like we should count on any assistance anytime soon.

A report from the Family Caregiver Alliance on caregiver policies in selected countries confirms that there is a wide variety of situations and programs across the US. Policies seem more uniform and more robust in some of the other countries examined [the table starting on page 12 compares countries]. In Germany, for example, caregivers receive payment and credit for their work in the public pension system. Community-based services and up to four weeks of vacation (with respite care) are available. I don’t know how well this more comprehensive policy translates to real help for caregivers.

Even when assistance is available, caregivers may not take advantage of it. At least in the US, my experience is that caregivers’ embarrassment about dementia may keep them from asking for help. Dr. Vitaliano says he has anecdotal evidence that many caregivers won’t take advantage of respite services because they don’t think the quality of care will be as good as what they provide. This may be universal – a qualitative study by researchers at the Universite Rene Descartes in Paris acknowledges Alzheimer caregivers’ reluctance to take advantage of community services, and explores the role of gender, family history and cultural norms in their reluctance.

When it comes to healthcare for the caregiver himself, problems getting time off and transportation for doctors visits can be real barriers. Home visits may be a solution, but at least in the US, they are not typically available. Another problem in the US, as Paula Martinac pointed out in her comments on the previous post, is that many caregivers are self-employed or don’t work outside the home at all. This usually means they don’t have health insurance to pay for the care they need.

If caregiver assistance were widely available, would it make a difference? University of California scientists studied the effects of a Medicare Alzheimer’s Disease demonstration program in the US. Caregivers enrolled in this program had increased access to community based services, including case management, caregiver education and training, support groups, counseling and transportation. Unfortunately, these services didn’t reduce caregiver burden or depression much at all.

Researchers are still trying to figure out what services will really help caregivers. The University of California researchers mentioned some possible needs in their conclusion: 24 hour care, crisis intervention, chronic disease management, and the kind of collaborative care Drs. Vitaliano and Katon wrote about in their article.

In the US, the National Institute of Aging is recruiting caregivers and non-caregivers to evaluate the effects of telephone-supervised, home-based counseling on diet and exercise.

It could be that the type of assistance offered has to be targeted to various segments of caregivers. A study of 225 White American and Cuban American caregivers carried out at the University of Miami found that a combination of family therapy and “technology intervention” [telephone and computer] significantly reduced depression after six months. The results of this study showed that services had different impacts depending on the caregiver's ethnic group and the caregiver-patient relationship.

The more I talk with caregivers, the more I realize my sister was right when she called my father’s death “Dad’s last gift.” We were really lucky that Dad died before he needed much in the way of care.

Comments

[Deb Peterson]

Hi Mona--Terrific post! I came across some publications from the World Health Organization that address some of the social and governmental aspects of the long-term caregiving phenomenon--you might be interested. They're at: http://www.who.int/chronic_conditions/ltc/en/ Some countries, like Germany, actually give pension (ie Social Security) credits to individuals who leave the workforce to care for a family member. Just another facet of the situation.

[Mona Johnson]

Thanks for the link to the WHO information, Deb. I'll check it out. Very interesting how various countries address the caregiving contribution and caregivers' needs. The report from the Family Caregiver Alliance mentioned above has more details, but only looks at 6 countries. I would think the formal recognition of the contributions of caregivers is as important as any payments. Do you think caregivers feel invisible or somehow not valued?

[Paula]

Mona - The part of your post about the VA struck a particular chord with me.

When I started investigating VA benefits for my dad (he was in the Army in WWII), a social worker kindly directed me to call the local American Legion, not the VA. And sure enough, when I met with the American Legion guy, he told me to file the paperwork through his office and with his help, and *not* to call the VA, which he hinted would give me the runaround. Still, the process seems to take about 6 months.

[Karma]

This is such an important topic. There really aren't enough resources and services for caregivers. Our society just hasn't yet come to terms with how hard it really is for us. My dad has been the primary caretaker for my mom, who has Alzheimer's, but I've been flying back and forth to help out. My dad's health has really declined in the last couple of months, I think specifically because of how hard caretaking is. And I've started having some minor health problems as well. Anyway, thanks for your discussion of this important topic.

[Gail Rae Hudson]

I remember reading this post. I also remember not commenting on it, I'm not sure why, I think it may have been that I talked about it round about in my journal but, what a great edition to PCParade, Mona! I'm glad you contributed it! I'm glad it was picked up! --Gail Rae