03-22-04
Helping Caregivers Cope
Andrea Brachtesende
Summary
Partnering with family caregivers is a powerful way to facilitate better outcomes for clients.
Before Jacqueline Marcell became a caregiver for her elderly parents, she was a busy television executive with an active social life, diverse interests, a home of her own. Marcell's parents had been married for 56 years. Her father was taking care of both the household and his wife, who needed some assistance with activities of daily living (ADL) since having a heart attack 10 years earlier. When her mother was hospitalized for an infection and almost died, Marcell was astounded to find that it was her father's inability to provide a clean environment that had led to the infection. She knew her parents would need help maintaining the household and caring for themselves if they were to remain in their home. But her father berated Marcell when she suggested hiring an assistant to help out a few days a week. In fact, he began launching frequent verbal and physical rages against Marcell, which he had never done before. Despite this hurtful and bewildering behavior, Marcell spent nearly a year as a full-time caregiver to her parents. In retrospect, there was so much she wished she had known along the way.
More than 22.4 million Americans are informal, or family, caregivers.1 These are spouses, adult children, other relatives, and friends, who provide unpaid care for persons who live in the community and require support to remain optimally independent. Not all family caregivers provide 24-hour care for their loved ones, but all do face challenges and stresses that may affect their ability to participate in their own valued occupations. It can be a tough job, and there are things that occupational therapy practitioners can do to support caregivers in this critical role.
Recognizing the Value of the Caregiver
The value of care provided by family caregivers is estimated at $257 billion annually.1 Some of the work (e.g., changing dressings, injecting or monitoring medications, transferring, suctioning) performed by these caregivers is the same work that professionals are paid to do in skilled nursing facilities or inpatient and home health care settings. In the workplace, absenteeism, turnover, and lost productivity among employees who care for elderly persons cost U.S. employers up to $29 billion a year,2 and one fifth of workers who are caregivers leave their jobs at least temporarily because of caregiving responsibilities.3 Far more difficult to measure are the psychological and physical toll caregiving takes, including social isolation, increased stress, fatigue, and exhaustion. Many studies have reported higher levels of depressive symptoms and mental health problems among caregivers compared with non-caregivers,4 and older caregiving spouses have a 63% higher death rate than those who are not involved in caregiving.5 That is not to say that caregiving is a wholly negative experience. Indeed, many find caregiving rewarding.6 Still, acknowledging caregivers' importance can help them cope more effectively with the demands of their situation.6
"One of the top needs that caregivers identify is for somebody to recognize what they're doing, that it's important, and that it's not always easy," said Ann O'Sullivan, OTR/L, LSW, chair of the American Occupational Therapy Association's (AOTA's) Home & Community Health Special Interest Section (SIS). As a family caregiver specialist with the Southern Maine Agency on Aging, O'Sullivan provides information, assistance, and training for caregivers. "I talk to caregivers day in and day out, and I've made it my practice that I never get off the phone with a caregiver without saying something-'Your mom's so lucky she has you helping her out like this,' or 'Isn't it great you're such a strong advocate for your dad?'-supporting the fact that they're trying to care for their loved one."
Marcell said that kind of compassion was important to helping her cope, and her occupational therapist was one of the few health professionals she encountered who provided it. "The difference with occupational therapists is that they're coming into the home and they're interacting one on one with the family. Many times, they're the only visitor that the family sees all day or all week. I looked so forward to that hour when Mary Jo [the family's occupational therapist] would come. It was a visitor coming to the house. All these other professionals would walk in with a clipboard, checking things off, filling out forms. There was no compassion. When Mary Jo would walk in and see these dark circles under my eyes because I was up all night with my sundowning father, crying every day for a year, she was the one who gave me a hug and said, 'You're going to be okay.'"
Teaching Caregivers Techniques
Emotional support and recognition for caregivers' contributions is important, but families also need appropriate knowledge and skills to care for their loved ones at home. "Caregivers need training in proper body mechanics, protecting themselves, how to set up routines, energy conservation, environmental and task simplification techniques, obtaining respite, and stress reduction techniques," said research sociologist Laura Gitlin, PhD, director of the Center for Applied Research on Aging and Health and a professor in the Department of Occupational Therapy at Thomas Jefferson University in Philadelphia. "OTs are in a unique position because they have the necessary skills to assess the [care recipient] and the caregiver, and then to assess ways of obtaining the right balance in the home environment to support that person's cognitive and physical functioning. OTs can impart important communication skills and techniques to simplify activities and the environment to fit capabilities of the care recipient." This, in turn, can ease caregiver burden and upset, as research by Gitlin and colleagues demonstrates.7,8
Marcell said that knowing the skills and techniques to use with her parents helped to alleviate some stress. For instance, the occupational therapist provided tips on how to elder-proof the house. "She's the one who said the couch is too low, you need a riser underneath it because they can't get in and out of it. You have to get rid of these throw rugs because they could fall on them. You have to turn down the thermostat on the water heater-they could scald themselves. You have to take the knobs off the stove burner, so your father can't accidentally burn the house down, which he almost did. She had all these little tips and advice on how to do things, and it made a huge difference for me," said Marcell. Teaching her to let her parents perform tasks on their own also was a valuable lesson. "I think the biggest thing an occupational therapist can do when they arrive at the home of someone who's caring for a loved one is to be very informative about what they're going to do and teach that caregiver the techniques. When the occupational therapist came to work with Mom, she was very good at showing me the importance of not doing things for my mother. My mother was struggling to get on a sweater one day and my immediate reaction was to help her. It was torturous to watch her struggling, but the therapist said, 'Be patient. Let her do it on her own. It gives her exercise, it gives her a feeling of accomplishment when she does it. If you just give her the chance, she'll accomplish it.' And she did. So it's through example that a therapist can show family members to be patient and let [care recipients] accomplish things on their own and build self-esteem."
As O'Sullivan points out, however, caregivers should be included and involved in the recipient's treatment process "to whatever level they and the client agree that they should be." Not all caregivers want to be involved, and not all care recipients want them involved. But including caregivers in the treatment process can be beneficial to all parties. For instance, family members know their relative in a way the practitioner does not and can provide insights on such things as the client's learning styles, idiosyncrasies, and spiritual beliefs. By involving family caregivers, particularly when the client may not be able to identify activities and occupations that matter to them (e.g., because of dementia, autism, etc.), occupational therapists and occupational therapy assistants can better understand the client's desires, history, developmental stage, and current contexts.9 This collaboration also ensures that the client and family are part of the intervention planning and implementation and that intervention is focused on what the client wants and needs to accomplish to remain as independent as possible. In turn, caregivers benefit by knowing what to expect at various stages of the intervention and, hopefully, by learning how to better help their loved ones.
"It just makes sense to involve the caregiver, who is involved in [the client's] daily life, in the treatment process. The family caregiver has knowledge of the person-whether child or adult-on an intimate level and can help practitioners figure out the best intervention. Plus, it's empowering for the caregiver to be involved. If you acknowledge that they're the experts when it comes to their family member, it's like you're working as a team to provide the best care," said Patricia LaVesser, PhD, OTR/L, an instructor in the Program of Occupational Therapy at Washington University School of Medicine in St. Louis and chair of AOTA's Developmental Disabilities SIS. LaVesser works mostly with children with developmental disabilities and their families, but she said that caregivers across the spectrum-from parents of children with disabilities to children of elderly persons-face similar challenges and benefit from being involved in their loved one's treatment program. "As the [Occupational Therapy Practice] Framework points out, our clients are individuals-including those involved in supporting or caring for the client-groups, and populations," she added.
Help Finding and Accessing Resources
Another big obstacle for family caregivers is finding and accessing resources. Among the things Marcell wishes she had known about early on are community transportation options, long-term care insurance, elder law attorneys, meals on wheels, and adult day programs.
Helping caregivers take care of themselves also is important to prevent burnout and to keep the caregiver healthy. "If you go down, who's going to take care of your loved one? So you need to take care of yourself, make sure you're in a support group, that you're eating right, getting your vitamins, your rest, getting respite from caring for your loved one," Marcell said. O'Sullivan, who administers her agency's Family Caregivers Support Program (FCSP), not only helps caregivers figure out what resources are out there but also how to access them: "All someone may need is a phone number, but for others who need help connecting up, part of the FCSP service is to assist them in accessing some of the services they need-filling out applications, negotiating the care system, or whatever that might mean." She helps callers problem-solve care issues and to locate or create support groups. In addition, she teaches classes on topics ranging from stress management for caregivers to communicating with health professionals to understanding different residential options (e.g., assisted living versus independent living). Under the Older Americans Act Reauthorization of 2000, each state received funding to implement FCSPs (for more information, go to www.aoa.gov/prof/aoaprog/caregiver/overview/overview_caregiver.asp). The services O'Sullivan provides to caregivers are paid for through government funding to her agency. Practitioners who rely on reimbursement through Medicare or insurance may be limited in the services they can provide to caregivers and expect to be paid for (see sidebar on reimbursement).
But even small interventions count, said Marcell. "There are just so many little tips that an occupational therapy professional can give to first-time caregivers, who have no idea what they're doing when they start out. I think having a packet of information that the therapist could not just leave but also sit down and talk about and be an advocate for helping caregivers know where to turn and what needs to be done would be extremely helpful." She also believes that it is crucial for occupational therapy practitioners to be able to recognize the signs of Alzheimer's disease and dementia (see related sidebar) and share those with caregivers of elderly clients. "Usually a crisis has occurred and someone is coming home from the hospital, so the caregiver may not be thinking clearly. Particularly in the case of an elderly person with undiagnosed dementia caring for a spouse, they may not comprehend what the therapist is telling them and may not be able to provide proper care for the spouse-for instance they might over- or under-medicate the spouse because they can't remember how many doses they've given the person already," she said.
Educating Professionals and the Public
Occupational therapy practitioners also can help caregivers by advocating for and educating others about their needs. Although some employers have recognized the benefits of helping employees who are caregivers, many do not offer the flexibility, support, or programs that can help workers balance work, leisure, and family responsibilities and that can ultimately save the company money. Occupational therapists and occupational therapy assistants could market their services to employers to start lunchtime support groups for caregivers, conduct employer and employee education programs (e.g., stress management for caregivers), or establish lifestyle redesign programs for employee caregivers. "As more employers become aware of employee caregiving issues," O'Sullivan said, "there could be a great opportunity for an occupational therapy practitioner to go to them and say, 'Here's a proven thing, here's how I want to apply it. I can help you retain your employees because I can help them become less stressed so they won't have to make all those work cutbacks. Then you won't have to spend the money and energy to hire and retrain someone to replace an employee who left because they couldnÕt manage their work and caregiving responsibilities.'"
Practitioners also can educate other health care professionals about caregiver needs and when to get occupational therapy practitioners involved. "Occupational therapy practitioners can have an important role as consultants to both formal and informal caregivers. Having them serve in a consultative capacity to care managers, assisted living facilities, and nursing facilities about what kinds of programs to place people with dementia is one example," Gitlin said. Training formal caregivers in how to bathe clients, how to communicate effectively, and how to set up activities for people with dementia are others. Providing a presence at non-occupational therapy organizations helps, too, according to Gayle Hersch, PhD, OTR, an associate professor in the School of Occupational Therapy at Texas Women's University in Houston. "I present at and attend outside conferences by organizations like ASA [the American Society on Aging] not only to show how our profession can help caregivers but also how we can help other disciplines as part of a health care team. It's also a way for me to learn from others," she said.
Hersch, along with Mary Corcoran, PhD, OTR/L, is an advisor on an AOTA-ASA collaborative agreement called Caregiving Awareness Through Resources and Education for Professionals (C.A.R.E.-Pro). Under the agreement, ASA has partnered with AOTA, the National Association for Social Workers, and the American Nurses Association to develop tools to increase the skills and knowledge of these professionals in providing needed services to family caregivers. The work is funded by a grant ASA received from the Administration on Aging. "One of the most exciting things about this is that ASA recognized occupational therapists to be key among the professionals who address aging, along with social workers and nurses. Occupational therapy has a front-line presence as part of the program," Hersch said.
Among the key components of the C.A.R.E.-Pro program was the "Supporting Family Caregivers" Web seminar, a single case study that demonstrated an interdisciplinary approach to promoting the health and well-being of informal caregivers. The seminar consisted of five 60-minute sessions taught by occupational therapists, nurses, and social workers for which practitioners could earn continuing education credit. Although the seminar is no longer available, the C.A.R.E.-Pro partners are developing an e-learning curriculum to provide self-paced continuing education to health professionals on caregiving issues. Members of AOTA's Special Interest Sections have been instrumental in reviewing or identifying occupational therapy practitioners to review the online learning courses. The new e-learning curriculum will be available on CD-ROM later this year.
Conclusion
"Caregiving is truly a public health concern because as our health system changes, and with the aging of our society, the expectations are increasing that families will be there to take care of their family members," said Gitlin. The holistic approach that occupational therapists and occupational therapy assistants use puts them in a unique position to observe and address the factors that influence their clients' intervention outcomes. By partnering with family caregivers to show them techniques, keep them informed about the treatment process, and provide resources and help accessing those resources, practitioners can facilitate better outcomes for their clients. By educating employers, the public, and other health professionals about the needs of caregivers and finding ways to address them, occupational therapy practitioners can contribute solutions to an issue that affects our whole society.
References
1. Family caregiving fact sheet. (2003, May). Washington, DC: U.S. Department of Health and Human Services, Administration on Aging. Retrieved November 26, 2003, from http://www.aoa.gov/press/oam/May_2003/media/fact_sheets/
National%20Family%20Caregiver%20Support%20Program.pdf
2. Metropolitan Life Insurance Corporation. (1997, June). The MetLife study of employer costs for working caregivers. Retrieved November 26, 2003, from http://www.caregiving.org/metlife.pdf
3. The National Alliance for Caregiving and AARP. (1997). Family caregiving in the U.S.: Findings from a national survey. Retrieved December 1, 2003, from http://www.caregiving.org/finalreport.pdf
4. Schulz, R., O'Brien, A. T., Bookwals, J., & Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. The Gerontologist, 35, 771-791.
5. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. JAMA, 282, 2215-2219.
6. Toseland, R. W., & Smith, T. (2003). National family caregivers support program special issues brief: Supporting caregivers through education and training. Retrieved on December 1, 2003, from the Administration on Aging Web site: http://www.aoa.gov/prof/aoaprog/caregiver/careprof/
progguidance/background/program_issues/Fin-Toseland.pdf
7. Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M., Schinfeld, S., & Hauck, W. (2003). Effects of the home environmental skill-building program on the caregiver-care recipient dyad: Six-month outcomes from the Philadelphia REACH initiative. The Gerontologist, 43, 532-546.
8. Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A., & Hauck, W. (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 4-14.
9. American Occupational Therapy Association. (2002). Occupational therapy practice framework: Domain and process. American Journal of Occupational Therapy, 56, 609-639.
Andrea Brachtesende is the associate editor of OT Practice.
Recognizing Alzheimer's Disease
Jacqueline Marcell's experience as a caregiver compelled her to become a full-time eldercare advocate. She is author and publisher of the Book-of-the-Month Club selection Elder Rage, or Take My Father...Please! How to Survive Caring for Aging Parents and host of the Internet radio program "Coping With Caregiving" (www.wsradio.com/copingwithcaregiving). Marcell also is a national speaker in the area of eldercare awareness and reform. In her book (www.elderrage.com), she shares not only her trials and tribulations as a caregiver, but also resources such as the information below, adapted from the Alzheimer's Association (www.alz.org). Ten Warning Signs of Alzheimer's Disease
- Memory loss
- Difficulty performing familiar tasks
- Problems with language
- Disorientation of time and place
- Poor or decreased judgment
- Problems with abstract thinking
- Misplacing things
- Changes in mood or behavior
- Changes in personality
- Loss of initiative
Some change in memory occurs as a normal part of the aging process, but Alzheimer's disease is more than simple lapses in memory. Persons who have the disease experience increasing difficulties communicating, learning, thinking, and reasoning-problems severe enough to affect their work, social participation, and activities of daily living. Individuals who recognize any of the warning signs in themselves or a loved one should consult a dementia specialist immediately. Early diagnosis is the first step to getting appropriate treatment to slow the progression of the disease and to obtaining the best care and support.
Reimbursement for OT Services Involving Caregivers
Practitioners who rely on reimbursement through Medicare or private insurance should note that most payers will only cover services delivered directly to the client. Education or training given to family caregivers in the presence of the client are usually considered part of the services provided to that person. For example, an occupational therapist would want to educate family members of a person with Alzheimer's disease on how to follow up on treatment and care for their loved one. This intervention will be covered as long as client and caregiver are both present at the time services are provided.
For More Information
Alzheimer's Association
225 North Michigan Avenue, Suite 1700
Chicago, IL 60601-7633
800-272-3900
www.alz.org
American Society on Aging
833 Market Street, Suite 511
San Francisco, CA 94103
800-537-9728
www.asaging.org
Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244-1850
www.cms.hhs.gov (search for caregivers)
Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
800-445-8106
www.caregiver.org
National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
www.caregiving.org
National Association of Area Agencies on Aging
927 15th Street, NW, Sixth Floor
Washington, DC 20005
202-296-8130
www.n4a.org
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
800-896-3650
www.nfcacares.org
National Institute on Aging Information Center
PO Box 8057
Gaithersburg, MD 20898-8057
800-222-2225
800-222-4225 (TTY)
www.nih.gov/nia/
Occupational Therapy for Family, Professional, and Paraprofessional Caregivers (Online course)
By M. Corcoran. Earn 1 AOTA CEU (10 contact hours). Details and registration at www.aota.org (click on Continuing Ed). $198 for members; $280 for nonmembers.
A Part of Daily Life: Alzheimer's Caregivers Simplify Activities and the Home
(16-minute video and resource manual)
By A. Morris & G. Hunt, 1994. Bethesda, MD: American Occupational Therapy Association. ($25 for members, $35 for nonmembers. To order, call toll free 877-404-AOTA or shop online at www.aota.org.)
U.S. Administration on Aging
200 Independence Avenue, SW
Washington, DC 20201
202-619-0724
www.aoa.gov
Elder Care Locator: 800-677-1116
www.eldercare.gov
©Copyright 2004. The American Occupational Therapy Association. All rights reserved. This article was originally published in the March 22, 2004 issue of OT Practice.
