At the height of the pandemic, one of my patients, Bob, tried to do everything for his cognitively impaired wife, Susan, as they hunkered down in their home in South Florida.
The pandemic served to mask his reluctance to tell their family and friends about Susan’s condition. He feared that others would be indiscreet and spread gossip, or even abandon him.
Over time, Bob says he felt increasingly isolated and unsupported. Eventually, pushed by his daughters to reach out, he discovered that most people already knew what was going on. In fact, he learned that he wasn’t alone in his plight, as several cousins responded with support and advice based on their own experiences as caregivers.
In my role as a geriatric psychiatrist, I see situations like this all the time—caregivers who do any number of things that they believe are in the best interest of their loved ones, but in fact serve mainly to undermine their own well-being. In doing so, they often pay a high emotional, physical and financial toll, especially when those around them, as well as doctors and other clinicians, focus solely on the needs of the care recipients.
It is crucial for caregivers to understand that this is not a zero-sum game: What’s best for the caregiver is often what’s best for the recipient as well. For Bob, for instance, arranging visits by a home health service and the additional support that he and Susan now get from their three daughters and their families have made a huge difference—for both of them.
What follows are three cardinal mistakes that caregivers make that end up hurting the caregiver—and the person they are working so hard to help.
No. 1: Ignoring their own health
Too many caregivers neglect their own health in their zeal to provide for the health of others, leading to increases in both medical and psychiatric illness and severity. A 2011 AARP report highlighted how dementia caregivers in particular are more likely to put off medical care because of their daily responsibilities to someone else.
The Covid pandemic has exacerbated this mistake, as caregivers have had periods of limited access to necessary screening tests or other procedures for themselves, or haven’t been able to fully navigate the world of telehealth.
Another pernicious downside of caregiving was highlighted by a recent study that found that when dementia patients were unable to express emotions or react to their caregivers, the caregivers’ health suffered. These negative health consequences stem, in part, from the fact that caregivers found it stressful—as evidenced by an increasing in their resting heart rate and blood pressure—when they didn’t receive positive emotional responses. It’s a difficult if not impossible situation to remedy when the care recipient lacks the cognitive and emotional capacity to respond.
The antidote: Routine checkups with the caregiver’s primary-care physician are crucial to avoid unnecessary illnesses and to provide surveillance and support for such conditions as high blood pressure, elevated glucose levels and depression. In addition, research has shown that being socially connected to others is an integral part of health and longevity. To this end, caregivers need regular face-to-face time with family and friends who can provide a sense of normality and community through the rhythms and rituals of daily life. Research has shown that getting away and having a true break is one of the best ways to reduce feelings of burden.
No. 2: Going it alone
As was the case with my patient Bob, some caregivers assume a sense of total responsibility toward the care recipient, even denigrating the abilities and intentions of others. Some of this is caused by fear of embarrassment or abandonment, should others learn too much about their plight. The pandemic heightened all of these factors, turning too many caregivers into lonely warriors. There may be pride in shouldering the burdens alone, but both caregiver and recipient undergo excessive stress faced with enormous physical, mental, social and financial barriers.
The antidote: Caregivers need to build a team of individuals, each with a specific role. Trusted professionals and specialists can help with diagnostic and treatment issues. Family and friends can provide companionship, emotional support and breaks. Home health services will assist with daily activities. Ideally, a team coordinator, formally or informally trained, can help everyone navigate barriers encountered in healthcare systems and insurance policies, or other problems. Once caregivers have a team, it’s important to engage each member with questions, requests and even critiques to optimize their roles.
No. 3: Seeing the disease and not the person
Many individuals who need care have chronic diseases such as Alzheimer’s or Parkinson’s that, on average, progress into more severe states over time. In addition, the aging process itself can worsen pre-existing disabilities. Some caregivers feel powerless and depressed when they only imagine the care recipient following a dismal trajectory. Each day becomes an endurance test, with the caregiver unable to recognize the great power inherent in the relationship with the care recipient.
What’s more, such a view, while realistic in some ways, is not wholly predictive of the future. A nihilistic attitude can influence care decisions in negative ways, such as leading caregivers to forgo interventions that might improve care even if they don’t cure. Or it might push caregivers to seek out unproven or excessive ways to assess or treat the disease or disability even if it’s not in the best interest of the person.
The antidote: American physician William Osler famously advised his colleagues to treat the patient and not the disease. In the same spirit, I advise caregivers to take their charge’s personality and unique life history into account when looking for ways to improve their care. Begin by trying to imagine what are they feeling, thinking and experiencing. In moments of need, even when there is resistance, what is the person trying to achieve? Enhanced empathy will boost the morale and hope of caregivers, and prompt creative thinking about ways to optimize care and provide stimulating activities that engage the person. In turn, caregivers have more time and energy and better attitudes toward their own self-care and personal pursuits.
The late British gerontologist Thomas Kitwood, based on his work with individuals with dementia, argued that we dehumanize others when we fail to see their inherent value and remaining abilities that can be expressed and engaged. In his pioneering work developing the concept of person-centered care, he saw in the best of caregiver relationships the potential to actually alter the course and well-being of care recipients by positively recognizing and engaging with them.
I recently encountered a devoted caregiver named James who wrote a several-page account of what he imagined his longtime partner and care recipient was experiencing in the throes of a disease that obscured his personality and robbed him of his ability to speak. Refocusing on the person this way led James to adjust his approach to daily care, reducing his partner’s agitation and providing more meaningful interactions. It also freed up James to spend more time in things he enjoyed.
Caregivers can begin to empower themselves, Dr. Kitwood said, by being realistic about their limitations and strengths, and by giving themselves some credit for the good they can accomplish. This attitude builds self-esteem and hope, and turns caregiving into a more meaningful and positive experience. I’ve seen countless examples in which caregivers helped an ill or disabled care recipient emerge and actually transcend their limitations by interactions with pets, music, religious services and other meaningful activities. In all of these circumstances, what is given to the care recipient comes back to the caregiver in important and health-giving ways.
This article was written by Marc Agronin and published in the Wall Street Journal on April 16, 2022.
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