Five years ago Miki Paul, PhD, felt like she and her husband of 26 years, Chuck, were living their dream life. They were happily married and both enjoyed successful careers, she as a psychologist in private practice and he as an electrical engineer. They were best friends and looked forward to weekends at their cabin near Tucson, Arizona. But that began to change when Miki noticed changes in her husband's behavior. Normally a gentle man with an impeccable sense of direction, Chuck started experiencing outbursts of anger and getting lost. He was confused about time, started tripping when he walked and couldn't lift their suitcases out of the car.
Chuck was eventually diagnosed with amyotrophic lateral sclerosis (Lou Gehrig's disease) and frontotemporal dementia (ALS-FTD). His brain would continue to deteriorate while his muscles weakened and wasted away, ultimately leaving him paralyzed.
In the ensuing months, Miki Paul transitioned to the role of caregiver. She scaled back her work to 15 hours a week and hired a home-care provider to assist her husband while she was at the office. Before and after work, she helped Chuck with toileting, grooming and dressing, learned how to do tube feeding, and accompanied him to multiple doctor appointments every week. She took over the family finances and household maintenance—all while grappling with grief, anxiety and frustration as her husband slipped away.
"I thought the hardest thing I had ever done was working and getting my PhD while being a single parent after my first marriage ended, but caregiving and advocating for my husband while maintaining a practice was much more difficult," says Paul, who was 65 when her husband was diagnosed. "It was incredibly exhausting."
In February 2015, 16 months after the diagnosis, her husband died at age 66.
Miki Paul's story is increasingly familiar to families throughout the country as the toll of caregiving gains national attention. In September 2016, the National Academies of Sciences, Engineering, and Medicine (NAS) released a report calling for the nation to better prepare for the unprecedented demographic shift that will require more Americans to be caregivers. Today, about 18 million Americans care for family members who are 65 and older. By 2050, the number of older adults who are most likely to need intensive support from family caregivers will jump to more than 30 million, based on statistics in the report. The report asserts that these caregivers need more recognition, information and support to fulfill their responsibilities and maintain their own health and well-being (Families Caring for an Aging America, 2016).
"We depend on family caregivers, but this job is more complex than in the past," says 2010 APA President Carol Goodheart, EdD, who appointed a task force that developed "The APA Family Caregiver's Briefcase" (see Resources at bottom of page). "We are living longer, hospital stays are shorter and people live at home with more serious and chronic illnesses. Caregivers today have to learn to manage things that used to be done in hospitals, and they can't always afford to hire home-care providers to help."
With high levels of responsibility and lack of support, research shows that caregivers are at risk of psychological and physical problems. According to the report, when compared with noncaregivers, family caregivers of older adults are more likely to experience depression, anxiety and social isolation, and have higher rates of chronic disease.
People caring for loved ones with mental illnesses are also vulnerable to high levels of stress and strain, according to a study released in February 2016. The National Alliance for Caregiving partnered with two mental health organizations to study more than 1,600 caregivers who were providing care to adults affected by bipolar disorder, schizophrenia, major depression or other mental illnesses. More than 70 percent of the caregivers reported high levels of emotional stress, and 40 percent said they found it difficult to take care of their own health. More than half said that after diagnosis, it was difficult to find the right drug dose for their loved ones. Only one-third felt that the medication was effectively managing the mental health condition, and one-third said it was difficult getting loved ones to adhere to the medication regimen (On Pins and Needles: Caregivers of Adults with Mental Illness, 2016).
Caregiving can be especially weighty for psychologists who are also engaged in care for others as a part of their jobs, Goodheart says. Although psychological training may equip them to deal with this challenge better than the average layperson, professionals shouldn't overestimate the protection that psychological knowledge offers, she explains.
"It's important for caregivers to recognize that they are not alone and there are services available to help them," says Sara Czaja, PhD, who directs the Center on Aging at the University of Miami and was a member of the NAS committee that drafted the report. "Millions of people are in caregiving roles, and finding support from other caregivers is critical because you can learn from one another and share your experiences."
The good news is that psychologists' research has identified ways to improve the lives of caregivers. Here is a summary of the most recent findings.
One common obstacle caregivers face is difficulty making informed decisions about a loved one's care, whether that's determining whether to bring in outside help, trying a new therapy, or moving someone to more supportive housing. Often it takes time to find the answers, says Sara Qualls, PhD, who directs the Aging Center and the Gerontology Center at the University of Colorado and was a member of the APA task force that developed the Briefcase. Qualls was a caregiver for her mother, who had a stroke and developed dementia, and father-in-law, who had Parkinson's disease. They both died, and now she is a caregiver for her frail and blind mother-in-law and her adult son, who has an intellectual disability.
"I remember having multiple issues to deal with for my mother while also trying to manage my professional and parental obligations," says Qualls. Her mother needed to move to an assisted living facility that specialized in dementia care. As Qualls faced the daunting task of finding the right place, she decided to use one of the skills she teaches to other caregivers: active problem solving.
"There is a lot of research suggesting that active problem solving is very useful and reduces the sense of burden for family members providing care," she says. "When you are confused or stuck and can't figure out a solution, find some assistance in problem solving. Ask people to help you brainstorm a range of solutions, list the pros and cons, and test out the options."
Active problem solving was an important element of caregiver support provided in an intervention known as the REACH (Resources for Enhancing Alzheimer's Caregiver Health) program, a multisite study funded by the National Institutes of Health. "We know that many patients with dementia develop behavioral problems like wandering and repeated questions, and our focus was on teaching caregivers how to deal with these issues," says Czaja, one of the authors of the original 2003 REACH study.
The intervention included nine in-home sessions and three telephone sessions tailored to the caregiver's specific needs. "For example, in some cases the caregivers needed to talk about how to keep the loved one safe. The interventionist could suggest putting devices on doors and windows that signal the caregiver if they are open, or leaving the car keys out of sight," Czaja says.
Multiple follow-up studies have shown the benefits of the REACH model, and Czaja is now working on one that provides the intervention via video conferencing on a tablet computer. This technology would allow a wider range of people to have access to this type of support.
Involve the family
While it may be tempting to go it alone when caregiving, research has also shown that people who reach out to family members for help will fare better in the long run. Mary Mittelman, DrPH, a professor in the department of psychiatry at NYU School of Medicine, acknowledges that this is not always easy because family dynamics can be complicated. Her research, however, shows that family involvement can help the caregiver and the loved one.
In the study, she conducted a multicomponent intervention in which the primary caregiver and other family members met in the presence of a trained counselor.
"In these sessions, the caregiver can talk about what he or she wants for help, and family members can talk about what they are willing to give," Mittelman says. "These meetings were shown to improve social support from family members and decrease symptoms of depression in caregivers." (Health Affairs, 2014, and The American Journal of Psychiatry, 2004).
The results also suggested that improved social support for caregivers kept care recipients out of a nursing home an average of 1.5 years longer, and most participants preferred to keep family members with them as long as possible, Mittelman says. She has now developed a training program for psychologists or other professionals who are interested in providing family counseling specifically related to caregiving.
Regular respite is vital
Although a significant amount of research has focused on teaching caregivers skills to manage the problems they are facing, psychologist Steven Zarit, PhD, of Pennsylvania State University, has taken a different approach. He studied whether taking regular breaks from caregiving improved well-being for people in these roles. In the Daily Stress and Health Study (DASH), he tested levels of two stress hormones (cortisol and DHEA-S) in caregivers of people with dementia.
"One of the big issues for caregivers who are having high levels of stress is that their own health can suffer," Zarit says. "Chronic stress can weaken the immune system and make people more vulnerable to illness."
Zarit found that stress hormone levels were better regulated on the days the caregivers sent the care recipients to adult day services, and this was correlated to lower levels of anger and depression. They also found a statistical relationship between using adult day services and better functional health for caregivers, measured by such activities as walking, lifting heavy objects and carrying groceries. These benefits continue throughout the day even if someone returns to caregiving duties after the break, Zarit says (DASH Final Report, 2014).
He suggests that caregivers consider contacting the National Adult Day Services Association to learn about programs in their area. "It's also better for care recipients to participate in these programs because they can get out, see other people and engage in activities."
Find a connection point
Another strategy that has been shown to improve well-being in both caregivers and care recipients is sharing activities that promote a sense of meaning, says Rebecca Allen, PhD, a psychology professor in the Alabama Research Institute of Aging and department of psychology at the University of Alabama. In one of Allen's recent studies, caregiver/care recipient pairs participated in a reminiscence and creative activity intervention. The pairs discussed favorite memories together, important people in the life of the care recipient and other topics. Then they completed an activity that represented the legacy the care recipient wanted to leave behind, such as a photo album or book of family recipes.
The pairs in the intervention group worked with a volunteer to complete the activity, and the pairs in the control group received supportive phone calls from research staff instead of doing the activity. The groups that participated in the intervention showed decreased stress and increased meaning in life compared with the control group (Journal of Pain and Symptom Management, 2014).
"During these types of activities, caregivers can ask care recipients to share what they want to be remembered for or what lessons they have learned in life," Allen says. "These conversations can be a powerful, positive experience that helps the pair feel like their time together is meaningful."
Allen acknowledges that these types of interactions may be difficult for someone in the later stages of dementia, and in these cases, caregivers can find other activities that are meaningful. Allen is the primary caregiver for her sister with vascular dementia. Her sister cannot encode new information, but she can recollect things from the past. Allen noticed her sister enjoyed looking at pictures of former pets and could remember the names of the animals. Now they take time each week to look at old photos of pets. "We also used to love horror movies as kids, so I give her a line from a horror movie and she will finish it," Allen says. "It makes me feel closer to her and she smiles."
Leslie Ault, PhD, whose wife has Alzheimer's disease, discovered singing together was a way to connect with his wife. He visits her two to three hours a day at the care home where she now lives, and he took guitar lessons to learn a few simple chords. Now other residents in the care home join in singing songs like "Jingle Bells" and "Yankee Doodle" at mealtimes. He also enjoys walking laps around the home with his wife and other residents.
"It's fulfilling to be helping another person," says Ault, who retired in 2011 from his job as a professor at Hostos Community College in New York. "I'm doing things that benefit my wife physically, cognitively and emotionally, and she has experienced minimal cognitive decline for the last two years."
Learning how to see the positive aspects of caregiving has transformed the way psychologist Barry J. Jacobs, PsyD, works with clients who are in these roles. Jacobs, co-author of the 2016 book "AARP Meditations for Caregivers," says he used to focus on helping clients minimize the emotional and physical strains, but that began to change after his personal experiences caring for a stepfather with Alzheimer's disease and a mother with dementia.
"Caregivers go through long periods of adversity, but they grow personally and spiritually, and they gain an enhanced sense of purpose from making a difference in someone's life," says Jacobs, director of behavioral sciences at the Crozer-Keystone Family Medicine Residency Program in Springfield, Pennsylvania. "Caregiving has made me a better person and more compassionate, and given me a greater basis for feeling the suffering of others."
Now he helps people identify the values underlying their decisions to be caregivers and the bigger purpose in the role, which helps them overcome the sense of feeling like victims of circumstances. "I was aware in my own case that whatever choice I made regarding caregiving would be a model for my children. I wanted them to see the value of family members demonstrating commitment to each other's well-being."
In fact, the benefits of caregiving are often overlooked in research, says David Roth, PhD, who directs the Center on Aging and Health at Johns Hopkins University in Maryland. His epidemiological studies have found that most caregivers are more hearty and live longer than people who do not take on caregiving roles (The Gerontologist, 2015).
"One of the things we are finding is that the physical health risks of caregiving are not as dire as some earlier reports," says Roth. "We did a survival analysis and found that caregivers live 18 percent longer than noncaregivers. Part of survival benefit is mastering and overcoming the challenges of providing assistance to a loved one."
Although caregiving for her husband was the hardest thing Miki Paul had ever done, she testifies to the fact that the experience made her stronger. She learned how to be more organized when she was forced to manage her private practice and her husband's care. She learned to be more assertive by advocating for her husband with health-care professionals and services. In the past she had felt uncomfortable with mechanical devices, but she taught herself how to use a tube feeding device, wheelchair lift on the van and the BiPAP machine to help her husband breathe at night.
She also slowly let go of her perfectionistic tendencies and she learned the importance of setting more realistic expectations for herself and her husband.
"I learned that I am more resilient than I ever imagined," Paul says. "I feel calmer and better physically than ever, and I'm starting to feel ready to begin making plans for my future."
APA's Family Caregiver Briefcase
Go to www.apa.org/pi/about/publications/caregivers/index.aspx
AARP Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family
Jacobs, B. & Mayer, J., 2016
Caregiver Family Therapy: Empowering Families to Meet the Challenges of Aging
Qualls, S. & Williams, A.A., 2013
New York Caregiver Intervention
Online training and certification program for training on family counseling related to caregiving.
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