Within the United States is a significant population of informal (predominantly family) caregivers. AARP estimates that during 2009, 61.6 million family caregivers were assisting adults with limitations in daily activities at some point. When those caring for children with special needs are included, the caregiver population increases to 65.7 million—almost 30% of the US adult population.
The economic value of family caregiving for adults in 2009 has been estimated, conservatively, at $450 billion. “If you had to pay someone to do the work that family caregivers are doing, that’s how much it would cost,” says Susan C. Reinhard, PhD, RN, FAAN, Senior Vice President of AARP’s Public Policy Institute, which issued a report on the subject. “If they stop doing what they’re doing, thousands of people would go into a nursing home, and that would impact state and national budgets quite a bit.”
Despite growing acknowledgement of the role that family and friends play in the lives of the elderly and the ailing, there is still concern that caregivers’ needs are largely unaddressed. Even organizations that are dedicated to caregiving reach mostly “self-identified” caregivers, those who have decided they need assistance or information and therefore reach out for help.
“But that’s just scratching the surface—there are lots of people who don’t call, who are out providing care and feeling overwhelmed for whatever reason,” says Kathleen Kelly, MPA, Executive Director of the Family Caregiver Alliance, which offers programs at national, state, and local levels to support and sustain caregivers. “Either they don’t know who to call or how to explain their situation, or they’re embarrassed because they feel like they should be able to handle all of this change in their lives.”
Since both the caregiver’s and the care recipient’s health can be affected, clinicians may be in a position to identify some of those missed opportunities. “It’s almost like you should assume there’s a family caregiver in the picture, and see if you can figure out who that person is and how you can help,” Reinhard says. “If you can help that person, your job is going to be easier.”
Recognizing a Caregiver
Family and friends have always provided short- and long-term support to loved ones, but the issues surrounding caregiving have grown more complex in recent decades. The AARP report cites “the impact of shorter hospital stays, limited hospital discharge planning, and the spread of home-based medical technologies” as factors in the increased role family members play in a patient’s health care. Research indicates that 23% to 53% of family caregivers perform such health-related tasks as bandaging and wound care, managing catheters, and giving injections.
In addition, there are demographic trends that have started to and will continue to bring caregiving issues to the forefront. For one thing, the US population is aging; the Baby Boom is about to beget an Elder Boom. Family size has decreased, as baby boomers tended to have fewer children than previous generations did, so there are potentially fewer caregivers in the picture. And more people are living longer with disabling conditions (which often start at earlier ages).
About 66% of caregivers in the US are women, with an average age of 48. Most work outside the home and spend on average 20 hours per week on caregiving activities. Much has been written about the “sandwich generation,” whose members find themselves juggling the needs of their aging parents with those of their own children.
The cumulative effect of all their responsibilities may be burnout. It is estimated that 40% to 70% of caregivers have clinically significant symptoms of depression; 25% to 50% of them meet the diagnostic criteria for major depressive disorder. Caregiving has also been associated with chronic health problems, such as hypertension, poor immune function, and fatigue. This is why advocates say it is important to help caregivers reduce the strain on them.
“Not all health care providers necessarily know what to do to help the caregiver,” says Barbara Resnick, PhD, RN, CRNP, FAAN, FAANP, Chair of Gerontology at the University of Maryland School of Nursing. “They know how to take care of the patient, which is why they want to focus in that direction.”
Caregivers often report feeling ignored by health care providers. “Actually look at the person who is standing next to the patient and talk to them,” Reinhard says. “I can’t tell you how invisible they feel.”
Recognizing a caregiver is often that easy—she or he is indeed right there with the patient. But in other instances, health care providers may need to make a little extra effort to establish whether the patient has someone who is assisting them at home.
“If the person is coming into your office, you should say to the patient, ‘Did someone bring you here? Would you like him or her to be with you for any part of our discussion today?’” says Reinhard. “All you need to do is ask [permission to include the caregiver] and nine times out of 10, they’re going to say, ‘Oh, please do.’ Otherwise, the daughter or whoever it is thinks she can’t come in, and the patient leaves not remembering a thing that has been said.”
If you want to assess how well a caregiver is coping with her or his responsibilities, Kathy Kemle, PA-C, MS, Assistant Director of the Geriatrics Fellowship/Geriatrics Division at the Medical Center of Central Georgia, recommends the Zarit Burden Scale, a 22-question assessment tool that has been used for almost 30 years.
“One of the nice things about it is it’s in writing, which forces the caregiver to think about it,” Kemle says. “So if they can read and write, they can fill it out while you’re seeing the patient. I usually present it as ‘Sometimes it helps us all take better care of the patient if we know you’re taking care of yourself, and these questions will help me understand how things are going and how you’re feeling.’”
In other instances, health care providers might be encountering caregivers and not even realizing it; they may present as a patient, too, with their own health concerns. But clinicians may only discover the larger context of those ailments if they ask.
“A lot of times, they don’t even know a person is a caregiver, because the caregiver may not divulge that,” Kemle observes. “So what they see is the depression and the neglected health maintenance of the caregiver, things like that, and they may not recognize it as actually due to caregiver strain.”
A new medical illness, such as hypertension, or a worsening health problem may be a manifestation of an unmet caregiver need. “So just ask the question: Are you providing care to anyone?” Kelly says. “Put it in your risk assessment.”
Whether you see caregivers with patients or on their own, there are many ways to open the conversation about what they might need to fulfill their responsibilities and maintain their own health. But a single question can make all the difference.
“This is not a universal experience, but it’s close to it: If you start asking about how they’re doing,” Kelly reports, “it may well be the first time someone has asked them.”
Decline in the health of a care recipient may also be a sign of caregiver burnout. Another possibly relevant fact is that hospital readmissions for Medicare recipients occur at a rate of about 25%. “One in four end up back in the hospital within 30 days,” says Reinhard. “That’s costing about $17 billion per year.”
It should not be construed that caregivers are “to blame” for those readmissions. But it may highlight the need for better discharge instructions, as well as better integration of family caregivers into the health care team. Often, caregivers find themselves out of their depth when a patient comes home from the hospital (or even an office visit in which the care plan was altered).
“If they’re asked to deal with complicated medical procedures, like injecting insulin, or if the patient is not able to get out of a wheelchair by himself,” Kelly says, “oftentimes when people go home, they feel like they don’t know what they’re doing, and they’re scared.”
Kemle has witnessed this firsthand. She recently made a house call to a woman who had been released from the hospital following a myocardial infarction. The patient’s husband was caring for her to the best of his ability, but since the discharge instructions focused on the woman’s cardiac medications, the husband mistakenly thought all her other prescriptions should be stopped. As a result, the woman’s COPD was unmanaged and the patient was “wheezing up a storm” when Kemle arrived.
It is important to remain nonjudgmental when confronted with a situation in which a patient’s care has been suboptimal. Caregivers often feel blamed for not taking good enough care or not recognizing symptoms.
“These are not professionals!” Reinhard emphasizes. “They may know a lot about what is going on, but they certainly do not have the level of experience and training that health care professionals do.”
“Sometimes it’s ignorance—the person just doesn’t know that this is a sign of deterioration,” Kemle says. “Sometimes it’s denial; they don’t want to see it as a problem.”
When a problem needs to be addressed, Kemle advises a concerned but compassionate approach that seeks to correct misinformation or provide improved direction. For example, if the patient has a severe wound that could not have developed overnight, the clinician might ask the caregiver how she or he cleans and dresses the wound. It may also help to delve deeper.
“What else is difficult? What other problems have they been having?” Kemle suggests asking. “Sometimes you’ll find out that they have an overwhelming burden and there’s no way anybody could manage it.”
In other cases, offering anticipatory guidance can go a long way toward avoiding situations that frustrate the caregiver and may even endanger the patient. “It’s usually a combination of disease-related education and what medical interventions need to be done, why they’re being done, and ways to get the best benefit from those interventions,” Resnick says.
For example, if the patient has congestive heart failure, the caregiver can be taught how to weigh the patient or what information to record so that a clinician can determine whether a change in the dose of a diuretic is needed. For a patient recovering from a hip fracture, the caregiver might appreciate reassurance that some physical activity is beneficial for his or her loved one.
“As scared as the patient is, the caregiver is even more afraid that something is going to happen to this individual,” Resnick points out. “It’s helpful to anticipate those problems and give them advice on exactly what it is they should do: ‘Your mom needs to walk this much every day,’ in very clear and specific goals.”
Clinicians can also be a caregiver’s allies when it comes to encouraging patient compliance with a treatment regimen. “They can always fall back on ‘The doctor or the nurse practitioner or whoever told me to do this,’” Resnick says. “And the caregivers don’t feel like the onus is on them.”
Of Benefit to All
That said, it is essential to remember who is the patient. “We need to be respectful of caregivers and nonjudgmental, but sometimes we also have to set limits with them and make it clear what the goals are,” Resnick says. “It is about the patient—keeping it focused on the patient while being sensitive to the needs of the caregiver.”
Addressing some of those needs can be as simple as directing caregivers to online resources, such as AARP’s caregiver site (www.aarp.org/caregiving) or the federal ElderCare Locator (www.eldercare.gov). Even better would be identifying local sources of assistance and providing contact information for those agencies or community groups on a flyer in the waiting room.
“Just giving them ‘permission’ is a way of saying, ‘You may need to reach out and get some additional support, because you’re carrying a big load,’” Kelly says.
Just bearing in mind that the caregiver is an important part of the equation can make a difference, especially to someone who is engaged in a labor of love—despite what it might cost financially, emotionally, and physiologically.
“Family caregivers are, in general, volunteering for this,” says Reinhard. “They want to do this; they love their family member. We’re just trying to point out that they deserve a lot of respect, a lot of attention.”