Caregivers of patients with chronic medical conditions such as cancer, diabetes or dementia place so much focus on their loved ones that they may neglect their own health in the process, thus putting themselves at a greater risk for health problems.
Studies show, in fact, that caregivers have an increased risk for alcohol, tobacco and drug abuse; depression, stress and anxiety disorders; cancer; diabetes, heart disease; heartburn; infection; obesity; and chronic pain.
That's why the Health is Primary(healthisprimary.org) campaign from Family Medicine for America's Health(fmahealth.org) is focusing this month on promoting caregiver health.
The campaign is offering a tearsheet in English(healthisprimary.org) and Spanish(healthisprimary.org) for family physicians to hand out to patients and their caregivers that offers tips on how to address caregiver health risks, support wellness, balance the burden of work and caregiving, and create a schedule to best manage the demands on their time.
Importance of Caregiver Health
Peter Selwyn, M.D., M.P.H., is director of the palliative care program at Montefiore Medical Center, the University Hospital of the Albert Einstein College of Medicine, Bronx, N.Y., and a member of the American Family Physician Advisory Board.
- The Health is Primary campaign from Family Medicine for America's Health is focusing this month on promoting caregiver health.
- The campaign is offering a tearsheet in English and Spanish for family physicians to hand out to patients and their caregivers with tips on how to address caregiver health risks, support wellness, balance the burden of work and caregiving, and more.
- Studies show that caregivers have increased risks for alcohol, tobacco and drug abuse; depression and anxiety disorders; cancer; heart disease; and numerous other health problems.
Selwyn told AAFP News there is growing evidence that caregivers for patients with serious, chronic illness are themselves at increased risk for physical, psychological, social and financial distress. "If these are not attended (to) and anticipated, it may jeopardize both their own and their loved ones' health," he said.
Carroll Haymon, M.D., practice medical director for Iora Primary Care's Seattle Central District Practice, told AAFP News "caregiver strain" is common in the world of geriatric medicine, and that as a caregiver's burden exceeds his or her resources (of time, money or energy), she or he begins to show signs of burnout and experiences negative health consequences, both physically and emotionally.
"I have seen caregivers develop depression and insomnia, as well as worsening physical health -- weight gain, decreased physical activity, worsening alcohol use -- as a consequence of this burden," she said. "If the caregiver is isolated -- for instance, a daughter providing all care without other family members to help out when needed -- then the problem is much worse. In the end, a burned out caregiver is a less-effective caregiver -- because they either 'snap' and mistreat the elder in their care, or they have to walk away."
Haymon said she's seen cases where caregivers take their charges to the hospital and leave them there as a last resort. "This makes me sad because these are predictable problems that we should be addressing long before people reach their breaking point," she said.
Balancing Work and Caregiving
According to the Administration on Aging, two out of three caregivers also work outside the home. These caregivers risk losing their jobs if their loved ones require them to provide intensive care.
Selwyn said he's seen caregivers lose their jobs after having to spend a great deal of time caring for their loved ones in situations where their employers did not offer flexible and accommodating schedules to facilitate the care.
That's why the Health is Primary campaign recommends that caregivers research employer policies and programs to figure out their best options.
"Talk with your human resources department and look through your employee manual to determine whether your company has policies in place or benefits available to help you manage your roles," the campaign's tearsheet advises.
The Family and Medical Leave Act entitles eligible employees to take 12 weeks of unpaid leave per year to care for a family member. Employee assistance programs also are available that can provide short-term counseling and referrals to services in the community. And an approved flexible work schedule, telecommuting or job-sharing arrangement could facilitate care while helping alleviate the stress of balancing caregiving and work.
Signs of a Distressed Caregiver
Haymon said when seeking to identify caregiver distress, family physicians first need to establish whether a patient has a caregiver in the first place.
"As our patients age, we should start by asking: 'What can my patient do for herself, and what does she need help with?'" Haymon said. "If she needs help, then who is providing that help? And if the help is significant, then the caregiver who provides it needs to be part of the care team. Otherwise, we will waste everybody's time making textbook-perfect medical plans that will never actually work."
In cases in which a caregiver is identified, the next step, said Selwyn, is to recognize that a person in this role who presents with signs of fatigue, worrying, disorganization, depression, anxiety or worsening of a chronic illness may be struggling with his or her situation.
Interventions for Caregivers in Need
So now that a family physician has a distressed caregiver in the exam room, what can be done to help?
Selwyn said caregivers first need to recognize and accept that they need to take time for themselves and that -- most importantly -- they don't see this as a betrayal or "letting down" their loved one.
Then, he said, caregivers should be encouraged to learn simple ways to foster self-awareness, self-care and mindfulness, such as meditation, breathing exercises, physical activity/exercise, writing/journaling, music, dance and being in nature.
"Help them appreciate that if they don't care for themselves, they will not be able to care for their loved ones -- to realize that caregivers also need care, that this is not an indulgence or something to feel guilty about," Selwyn said.
Haymon said she tells caregivers in no uncertain terms that caregiving is not a one-person job.
"We start with simple problem-solving: 'Who can help you? Family, friends, church members, local senior-service organizations?'" she said.
For caregivers of lower socioeconomic status, especially those who qualify for Medicaid, state programs (such as COPES(www.caregiver.org) [Community Options Program Entry System] in Washington) for caregiving assistance may be available.
"For those with some resources, I try hard to convince them that spending money on a few hours of caregiving a week can be a game-changer," Haymon said. "I also recommend they consider adult day programs, where the person can receive care at a center for a few hours a day or week, allowing the caregiver to go for a walk, run errands, have lunch with a friend or do something that brings them joy."
Additional Support for Caregivers
Selwyn said connecting with other caregivers -- whether through peer groups in person or online -- also can help strengthen caregivers' support systems. Such activities may focus on caregiving overall or, more specifically, on caring for patients with a particular condition or illness. He said it's also important that caregivers have their own sources of health care, including mental health support.
Haymon said she encourages caregivers and family members to attend medical visits with patients. If they can't, she arranges to meet them at a separate time by phone or video chat.
"Once, I did an advance care planning discussion with one daughter in the room with her very ill and elderly father, and another daughter on Google Hangout (a video conference app) from California," she said. "We were able to clarify the father's care goals and make a plan with the daughters, which allowed him to die peacefully in his own bed at home the following week."
Haymon said it's important for primary care professionals to recognize that taking care of frail elders really means taking care of the whole caregiving system -- whether that's family, paid caregivers or both.
"Practicing geriatrics without including caregivers would be like practicing pediatrics without including parents," she said. "And if the caregiver does poorly, the patient will surely do poorly as well.
"We need to recognize and support the incredible burden of labor that our caregivers assume -- often unpaid, or for very low wages -- and help them recognize that taking care of their loved ones also means taking care of themselves."
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October Campaign Is All About Championing Primary Care
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