More threads by David Baxter PhD

David Baxter PhD

Late Founder
When Caregivers Need Care
Thu Mar 16, 2006
By Amanda Gardner, HealthDay

An estimated 44 million Americans serve as unpaid caregivers for elderly or disabled family members.

And the number is growing, rather than decreasing, as policy veers sharply toward more home and community-based care, rather than institutionalization.

The one factor that gets lost in this equation, however, are the caregivers themselves. What needs do they have? How can they juggle at-home and at-work roles? How can they manage or prevent stress and accompanying health problems?

"Taking care of people with severe physical and cognitive disabilities can have very serious consequences for caregivers in terms of their own health, both physical and emotional," said Mary Jo Gibson, senior policy advisor at AARP's Public Policy Institute. "They often have a need for support groups and support services. They can be juggling multiple roles at home and at the workplace."

A new report from this Public Policy Institute details not only the needs, met and unmet, of these caregivers, but also examines model programs from eight different states that could be replicated to the benefit of the caregivers.

The report, Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support, was released Thursday.

"Family caregivers are the backbone of the long-term care system, and they need support," Gibson said. "We need to replicate those innovative family caregiving programs."

"Clearly, more and more families are providing care to people at home and are in tremendous need of additional support," added Cynthia Epstein, a family counselor and clinical researcher at Silberstein Aging & Dementia Research Center at New York University School of Medicine in New York City. "This report looks at the major issues, which are looking at the family caregiver as well as the patient as both in need of care."

Eight states -- Alabama, California, Georgia, Massachusetts, Minnesota, North Carolina, Pennsylvania and Washington -- have particularly innovative programs, the report found.

For instance, Caregiver Assessment programs identify family caregivers and their specific needs so they can then get needed support and prevent burnout.

"A frail elder without the family caregiver won't make it, but if you don't have a sense of who that family caregiver is you don't know what is needed," Epstein said. "Assessment is an intelligent step."

The assessments are then used to connect caregivers with services such as counseling, transportation, support groups and respite care -- somebody to give the caregiver a break.

Assessments feed into the next category of service, which are consumer-directed programs. Such programs give caregivers an element of choice and control over their decisions. Most states "offering consumer-directed options for caregivers include respite care (such as in-home care, adult day care, or weekend or overnight stays in a long-term care facility) and supplemental services (encompassing home modifications, yard work, chore services, and assistive devices)," the report said.

"The idea is that the family is in some way able to choose from a kind of menu of what would be helpful to them," Epstein said.

In addition to transportation, respite care and counseling, caregivers can also get help with home modifications, yard work, chore services and assistive devices such as wheelchairs.

Finally, collaborations with different health-care providers enable caregivers to be identified proactively in a doctor's office and then referred to specialty services to help them deal with the burden of caring for a loved one.

"This identifies the caregiver as a recipient of care and essentially as much of a patient as the frail elder," Epstein said. "That makes perfect sense. The physician doesn't have the resources, the connections. If there was a clear referral path, they would be willing to do it."

These are just glimpses of alternatives that might make the long-term care system work more smoothly as the population grows and ages. Ultimately, more change is going to be needed, the researchers said.

"We need broad, long-term care reform which would help both the care recipient and the caregiver," Gibson said. "The states have been putting the infrastructures in place, which will help in terms of caregiver support. They need to be replicated, and there need to be far more of them that reach more people, but what we wanted to highlight was that there are some models that can be built upon and are leading the way."

For more information, visit the National Family Caregiver Support Program.


it's nice that this article was published, i'm just cynical, though. out of 50 states in the US, only 8 states have really sat down to address the situation? it seems most states have left taking care of the caregivers to the caregivers--pun intended. i wrok in the healthcare system, it's really distressing sometimes trying to find the right resources, and then you find them but find your caregiver is not eligible for them! crazy systems...--poohbear
Iam a CNA and the last Nursing home I worked at it all went down hill. I hit rock bottom. I was always taking care of everyone esle and not my self. I worked long hours weekends cover everyone elses shifs, lifting elderly by myself. My lunch break consisted of sleep. I was alway on the go. doing other peoples work. Wonder if there is away to give the care to elderly people and take care of your self. Its not an easy job by no means, And i love working with eldery. some people just don't even care and leave elderly unittended, wet and in dangerous situations. I think they need more help in eldery care facilities. Then need to maek sure that EVERYONE is being taken care of. If only there was a way.

David Baxter PhD

Late Founder
LostChild, learning how to look after yourself and leave work behind when you go home is difficult but necessary for anyone in a helping profession. The alternative is certain burnout, sooner or later.


Lostchild, I have to say that my hat is absolutely off to you for the work that you do. The CNAs at my grandmother's nursing home were absolutely her ANGELS. I will never be able to say enough good things about you guys. The CNAs definitely turned into her family, always hugged her, took care of her, crawled into her bed with her when she couldn't sleep, fed her, talked to her when she couldn't talk back... They were there when she was dying and a couple of them even came to her memorial service. The CNAs genuinely valued each person's gifts, even in their diminished states. I have seen nothing but total compassion and dedication from CNAs....I do not know what society would do with out you. You definitely are definitely giving a wonderful gift to the world-and to the people who need it most, when they need it most, and regardless of if they are able to thank you for it. It is a selfless profession and I truly admire you for that.


i'm a state certified CNA and Student Technician too. She's right. Not enough coverage. RN's have a maximum number of patients, but CNAs/Techs don't. I've been the only tech on an entire floor several times. two dozen patients is just too much-- not to mention too dangerous. How can equitable patient care be given in thos circumstances. let me tell you, if a patient dies and their family finds out that there was only one technician on the floor, they could sue, if they could determine that vitals or care was delayed b/c of it. it's such a catch 22. we spend all our time caring for these patients in 12 hour shifts with little to no help, and then, we have no time to care for ourselves. and if we do, we are called back in to work-- once again b/c there is no help. the turnover rate is incredible in health care institutions! I have never seen so many people come and go! you'd think that with the need ever increasing for good health care, there would be more of an incentive to retain good employees.--poohbear
Wow, thanks. I appreciate that greatly. I know allot of Nurses get all the credit when were really the ones the are close and get to know these people we I do love. No offence to any Nurses..


no offense taken at all-- i'm in the nursing program here and i WILL ALWAYS REMEMBER BEING A CNA/TECH. I won't ever forget how hard it was to take vitals on even just the 12 patients when i had half the floor--let alone when I have all 24. I will do all the care for my patient that I can, and try to get the little things like ice and juice and a blanket. i won't sit on my butt while the tech runs around working the whole floor alone. i will never call a tech that is garbed up and helping a contact patient out to help me do something stupid-- like taking a blood sugar, a lab draw, or simply juice. i won't send techs in to "find out what the patient wants" when they ask for a nurse. after being a tech/CNA, i feel I will definitely make a better nurse! at least from the CNA's point of view!--Poohbear


options for caregivers include respite care (such as in-home care, adult day care, or weekend or overnight stays in a long-term care facility) and supplemental services (encompassing home modifications, yard work, chore services, and assistive devices),

Over here (Irl) this issue has been looked at time and time again... but from where i sit... it all looks good on paper.. actually getting these things is so full of red tape.. nearly not worth the effort.
Sometimes i think that the Government.. has the attitude... lets tell them what they want to hear.. but make sure it doesn't cost us too much.
the services are there... getting them is the prob for a lot of ppl.

Nurses and Tech's\CNA's and all who work in providing care, support to others.etc.
need the support and back up to help them do their chosen proffession to the best of their ability.
Burnout is inevitable if this is not available... or availed of if it is in place.

I really admire ppl who choose these caring proffession, because of the demands on them.. mentally and physically.. I wouldn't be able to do it.
I recently was the speaker for a local caregivers' support group. I spoke about how to handle the stressors of being a caregiver (private or professional). I would suggest becoming involved with a local support group for caregivers. It helps to have the support of others who are experiencing similar situations. This was an excellent thread. Thanks David!
I think that there should be people like that to come into nursing homes and speak about how Nursing care effects all aspects of you'r life. Mentally,physically and emotionally.. When I worked in the nursing home ware I live the administrator and nurses really didn't seem to care about the cna's well pretty much nothing. Thats great that you did that Comfortzone
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