It is one of the biggest assumptions in healthcare: Everybody benefits from early discharges. Hospitals are better off financially by reducing the length of stay for one person and quickly filling up the bed for the next patient, and physicians are able to move on to another patient. Patients are less likely to acquire nosocomial infections and more likely to return to their daily occupations in their own homes. Ideally, discharge planning begins when a person first enters a healthcare facility to ease the return to home or transition to a rehabilitation center, nursing home, or hospice. Providers expect that after discharge to home, family and friends can and will provide care and support as well as coordinate services, supplies, and medications.

If a patient is lucky, occupational therapy services will be ordered and available to address a family caregiver’s capabilities and home situation, in the context of the availability of financial and community resources and the long-term impact of illness on the family. If no OT referral is made, if imminent discharge cuts the process short, and if family members cannot attend therapy sessions, little caregiver preparation takes place. But what happens when the home healthcare stops, when the only person available as an ongoing caregiver is a child or adolescent, or when the legally responsible person lives long-distance?

Home healthcare services, which traditionally helped to fill in family care gaps, have dwindled in the face of Medicare reductions, including Medicare managed care. OT continues to be a secondary service under Medicare and is not a covered service under Medicaid in some states. State-funded programs and commercial managed care insurances also have limitations for the provision of home care. Even long-term care insurances have wide variations in waiting periods and coverage restrictions. Now more than ever, large sections of the population are uninsured, and the majority of the population is unable to afford long-term private in-home help. In the crest of the wave of our population living longer, the government is constantly seeking innovative approaches to solutions for long-term care, such as nursing home diversion programs, consumer directed care projects, and "money follows the person" models for achieving ways for patients and families to manage health at home. Also, technological advances have expanded options to provide equipment, telehealth, resources, and support for home care.

Family Caregivers — A Critical Component of the Healthcare Team

According to recent studies, 44.4 million family caregivers in America are providing care for adults, and 39% feel they had no choice in assuming this role. The 2004 National Alliance for Caregiving (NAC)/American Association for Retired Persons (AARP) report, Care-giving in the U.S., indicates that a typical caregiver —

• Is a 46-year-old married woman, with some college education, and
• Contributes at least 20 hours per week caregiving for someone who is at least 50 years old, most often her mother.

This care can include helping with activities of daily living (ADLs), such as bathing, dressing, incontinence care, toileting, eating, and transferring. She also provides help with instrumental activities of daily living (IADLs) such as providing transportation, managing finances, shopping, and coordinating services.¹

Caregivers are a critical resource to our society, economy, and healthcare system. More recent 2007 research conducted by the National Alliance for Caregiving and Evercare documents an estimated out-of-pocket annual expense per family of $5,531 for caregiving-related expenses, including household goods, transportation, medical care copays, and pharmaceuticals.² The calculated value of the unpaid labor and service contribution of adult family caregivers is currently estimated at $350 billion annually.³ Although the majority of family caregivers are women, the number of men who function as caregivers is increasing as men are living longer and as women who are spouses continue in the work force while their retired husbands may assist with caregiving responsibilities at home (particularly in multi-generation households). Additionally, more than 1.3 million children between the ages of 8 to 18 are caregivers.⁴

Examples of individuals who need caregiving include those who have a sudden loss of independence from an injury or an acute episode (such as a stroke), or a gradual loss of function from debilitating, chronic health conditions. Some people require help because of special needs due to impaired vision and/or hearing loss, while others may need aid because of a tendency to fall; mobility problems; dementia, neurological disorders, mental illness, and/or developmental disabilities.

Since 1985, the traditional nursing home population — those with extended stays — has been decreasing.⁵ Public concerns about the quality of nursing home care has kept some potential residents at home. In other cases, facility care is an unthinkable option for family members, even when the need for skilled care or the physical demands of caregiving at home are overwhelming and unsafe. Culture also influences nursing home placement. African-American, Latino, Asian, and Native American families care for family members at home more often, and have lower rates of nursing home placement, than whites.^6,7 Few families have the financial resources or long-term care insurance coverage to afford nursing home care or provide adequate paid services at home. Other families are dependent upon Social Security or disability income and cannot make ends meet when these funds are diverted for nursing home care. In the midst of medical crises and increased expenses compounded by the potential or real job loss of the person who is sick, demands on the employed person increase. Some of these demands may be delegated to children in the family.

Caregiving and Occupational Therapy

OT practitioners must routinely attend to caregiving and caregiver concerns in a number of important ways. The American Occupational Therapy Association Occupational Therapy Practice Framework, developed by the American Occupational Therapy Association (AOTA), identifies the caregiver as a critical component of the service delivery context, calls for caregiving to be addressed in the occupational profile and intervention plan, and includes care of others (including selecting and supervising caregivers) as an important IADL to be addressed by occupational therapy.⁸ AOTA resources related to caregiving include a Statement on Family Caregivers and Tips for Living brochures for therapy practitioners and consumers to address caregiving issues.⁹ The Statement on Family Caregivers identifies the role of OT as follows:

Occupational therapy practitioners can help ensure a healthy balance and support caregivers who experience sudden or long-term changes in their lifestyle and priorities and assist caregivers who may be at risk for negative health consequences. Occupational therapists and occupational therapy assistants bring broad expertise to intervene with family caregivers to facilitate care-giving and promote better health because of their knowledge and skills in addressing the physical, psychosocial, cognitive, sensory, and contextual elements that affect participation and engagement in everyday life activities.⁹

Moreover, family caregivers can make or break occupational therapy interventions. Not only self-care, but also financial management, community mobility, home modification, fall prevention, time management, and coping skills/adjustment to disability all require reinforcement and buy-in by family caregivers to achieve success. OT practitioners train caregivers to provide appropriate assistance, implement strategies for maintaining gains achieved, and follow up on recommendations for adaptive equipment, home modification, or assistive technology.^10,11 When a person lacks insight into his or her decline in function or is not ready to accept changes in daily tasks or the home environment, the family caregiver may offer the only pathway to long-term adjustment and remediation of functional loss.¹²

Health Risks Associated with Caregiving

Without question, plentiful financial resources smooth the path to managing a family member’s healthcare at home. However, while wealth purchases services, it does not relieve the burden of stress upon the family caregiver, who may now need to handle two lives instead of one. Seeing a loved one with ill health, being unable to alleviate the suffering, and feeling personally overwhelmed and fatigued, the family caregiver can also become a patient.¹³ When the patient has dementia, the multiple negative consequences of caregiving including immunosuppression, coronary heart disease, hypertension, anxiety, depression, exacerbation of chronic illnesses, and even premature death that may be related to hyperproduction of IL-6. IL-6 is a proinflammatory cytokine that is typically associated with age-related conditions, and its production was four times greater among stressed caregivers.¹⁴ During 2008 the Center for Disease Control (CDC) raised the bar on behalf of family caregivers by naming the protection of caregiver health a national priority.¹⁵ Even when someone is in a facility, surrounded by competent and qualified staff to help with personal care and life’s basics, family caregivers must participate in healthcare decision making, provide financial management, offer emotional support, and troubleshoot institutional care issues – activities that can involve significant time commitment and emotional strain.

The Consequences of Intense Family Caregiving

Worsened caregiver health as a ramification of caregiving is closely linked to the effects of chronic stress. Two primary factors exacerbate the effects and consequences of chronic stress among family caregivers:

1. The Level of Burden, which is a function of time spent on and types of caregiving activities.
2. The choice the caregiver feels that he or she makes to take on a caregiving role. Choice refers to whether the caregiver perceives there are other options for caregiving.

Among 528 family caregivers who experienced a decline in their health status as a result of caregiving, there were reports of a decrease in energy and sleep (87%); stress and/or panic attacks (70%); pains and aching (60%); depression (52%); headaches (41%); and a change in weight (38%).⁵ When the health of a caregiver declines, so does the ability to provide care.

An example of the difference in the Level of Burden scale reflects that at Level 1, the caregiver may spend up to eight hours per week helping with transportation and grocery shopping, while a Level 4 caregiver may provide 35 hours per week assisting with bathing, managing finances, grocery shopping, and transportation. Nearly half (48%) of caregivers provide more than nine hours of caregiving per week.¹ In a prior survey by the NFCA of its members who were predominantly Level 4 and 5 caregivers, about 60% were experiencing depression. Although not all self-reports were attached to a clinical diagnosis, at least four factors supported the validity of the reports. These included:

1. More negative emotions
2. Fewer positive emotions
3. More physical conditions including sleeplessness, back pain, headaches, stomach disorders, and colds
4. More frequent isolation.

Also, among caregivers who provided constant care — around the clock, seven days a week — as well as those who care for someone with impaired mobility, the rate of depression was higher than caregivers who provided fewer hours of care, and who did not assist with mobility.¹⁶ An alarming 1999 report in JAMA revealed a higher death rate among spousal caregivers who are 66 or older: Elderly caregivers who reported mental or emotional strain associated with caregiving were found to be 63% more likely to die within four years than those without strain.¹⁷

Caregiving families require education, guidance, and integrated systems of healthcare, social services, and the community to support them in caregiving roles. Many people, including healthcare professionals, are not aware of community resources that help with care, nor do they know how to find and gain access to them. The National Family Caregiver Support Program, enacted in 2000 and renewed and increased annually, has provided millions of family caregivers with information, assistance in accessing services, training, respite, and other supplemental services.¹⁸ This program, administered by the Department of Health and Human Services of the Administration on Aging, does not cover caregivers who are younger than 60, unless they are caring for someone older than 60. Legislation, signed by President Bush in December 2006, provided a mechanism for relieving caregivers of all ages, dependent on funding.

Today’s Complex Family

The changing family unit, with its individually unique dynamics, compounds the issues of caring for an aging population with its increased demand for care. Family members who are able to devote themselves to caregiving are fewer, women frequently work outside the home, family size is smaller, grandparents provide guardianship and childcare, and fewer family members are engaged in care responsibilities.

More people are providing caregiving assistance across distant parts of the country. In fact, an estimated 7 million parents live more than an hour away from their adult children who assist with their care.⁸ Extended families that may struggle with relationship issues further stress the caregiving responsibilities: For example, second or third marriages with multiple stepchildren, in-laws, ex-spouses, same-sex partners, and significant others add challenging new dimensions for caring roles, responsibilities, and legal issues. Also, men are just as likely to be primary caregivers and fully participate in care, often sacrificing more than their female counterparts; i.e., work-related travel.¹⁹ If they are not caregiving already, many adult children see caregiving in their future. One survey conducted by the National Family Caregivers Association (NFCA) found that 59% of the adult population either is or expects to be a family caregiver.²⁰

Total respondents in this sample = 810; child caring for parent = 192; parent caring for child = 154; caring for a spouse = 387; caring for other relatives, friends = 77

Care Is Changing

In recent years, changes in the type of care have accompanied the soaring demand. Portable technology allows the opportunity for high-tech treatments, such as infusion therapies, peritoneal dialysis, ventilators, feeding tubes, and special wound care, to take place at home. This trend places new burdens on caregivers, often with minimal physician and home healthcare support. Furthermore, care that used to encompass a few weeks or months now often extends for years. A 2004 study reports that the average duration of caregiving is 4.3 years; 29% of caregivers have provided care for more than five years.¹ Other factors, such as the desire to "age in place" along with new medical regimens and surgical techniques, facilitates the continuation of home-based care.

Doing "Double Duty" — Employed Caregivers

More than half of all family caregivers are employed (59%). Men who are family caregivers are more likely to be employed full-time than their counterpart women.¹ Family caregiving requires both male and female employees to juggle their time and work schedules, modify their schedules, and/or miss work. They may arrive late, leave early, take extended lunch hours, and use work time to "check in" with the one for whom they care. Men are as likely as women to assume the role of primary responsibility for caregiving; however, although men are as likely to assist with IADLs as women, they are less likely to participate in the provision of personal care, such as bathing, dressing, and toileting.¹⁹

Paying a High Price for Caregiving

Research conducted in 2007 by NAC and Evercare documents an estimated out-of-pocket annual expense per family of $5,531 for caregiving-related expenses, including household goods, transportation, medical care copays and pharmaceuticals.² A follow-up of the employed caregivers identified in the 1997 NAC/AARP study concluded that caregiving costs more than $659,000 per individual caregiver over a lifetime.²¹ This in-depth analysis, conducted by the National Center for Women and Aging at Brandeis University, found that employed caregivers lose money when they take a leave of absence, pass on promotions or relocations with advancement opportunities, reduce or stop work hours altogether, or take early retirement with a reduction in Social Security benefits and/or missed pension dollars.

The economic loss to businesses from family caregiving is an average of $2,441 per year for each full-time employee with intense caregiving responsibilities. The total estimated cost for all full-time, employed caregivers to U.S. employers is $33.6 billion,²² including:

• Absenteeism costs, which average about six days per year to fulfill caregiving responsibilities
• Replacement costs for caregiver employees who have to quit working
• Partial absenteeism from extended breaks, arriving late, or leaving early
• Workday interruptions, including phone calls to coordinate care and talking with their receivers of care
• Eldercare crises intervention
• Presenteeism, which includes a physical presence in the workplace, but an inability to fully focus on the work product
• Additional supervision of employed family caregivers

Employers, including those in the healthcare industry, also have higher healthcare costs because of depression and stress-related illness experienced by caregivers. Although awareness is growing on these issues, typically only larger companies provide support for caregiving employees. In environments of minimal support, employed caregivers experience a sense of discrimination and have concerns for confidentiality. For example, a 1998 survey discovered mechanisms through which an organization could affect employed caregivers:

• Unwritten rules determine how employees take care of family needs on company time.
• There is a prevalent belief that employers’ disfavor is incurred when family needs are put ahead of the job.
• Juggling the schedule jeopardizes promotion consideration.
• Managers discourage the use of work-life benefits.

When managers in this same study were queried, only one in two felt "very comfortable" providing employees with time flexibility.²³ The study concluded that caregivers were receiving and responding to mixed messages in the work environment.

A Win/Win Situation

The Administration on Aging sought innovative ways to help employers and employed caregivers deal with work-life realities. One such project is The Caring Workforce in St. Louis. Two years after this comprehensive model program was operational, an evaluation revealed encouraging results. Among the 4,000 employee participants, caregivers reported they had spent less time at work dealing with eldercare issues, had fewer absences, experienced less stress, and increased their caregiving skills. Concurrently, employers pointed to the potential for reducing their costs, and improving employee retention rates, productivity, and employee healthcare costs.²⁴ Other companies such as AT&T have been providing support services for several years to employees who are caregivers and the results have been good. While some companies have started to address the impact of caregiving in the workplace, employers want caregiver support programs to be cost-effective, carried out by professionals, easy to implement, and voluntary on the part of caregivers.²⁵

California Leads the Way

The 1993 Family and Medical Leave Act (FMLA) governs employers, such as hospitals, with more than 50 employees. This act entitles eligible employees to 12 weeks per year of unpaid leave for family without losing health benefits or job security. Eligibility requirements, restrictions to definition of family, and the inability to take unpaid leave discourage use of this entitlement. Effective July 1, 2004, California has been providing a comprehensive paid leave so that employees can receive up to six weeks of partial pay to care for a seriously ill family member, specifically a parent, child, spouse, or domestic partner.²⁶ This legislation serves as a model for other states to ultimately enact similar legislation, thus reducing the penalties incurred by family caregivers.

Employed workers from middle-income families are often hit the hardest financially because of a person’s illness. Sometimes other professionals are unaware of the options available. In the New England Journal of Medicine, Carol Levine, herself a social worker who remains gainfully employed even after 10 years of family caregiving, documents the nightmare that began with her husband’s accident: "The social worker assigned to my case had one goal — discharge. I was labeled a ‘selfish wife,’ since I refused to take him home without home care. ‘Get real,’ the social worker said. ‘Nobody will pay for home care. You have to quit your job and spend down to get on Medicaid.’"²⁷

Loss of most or all of a family’s savings is common. The Journal of the American Medical Association reported on the financial losses of 2,661 patients. Nearly one-third of these families incurred substantial financial loss from their savings as a result of the patient’s various medical conditions.²⁸ The type of job and the stress of the job can have different effects on caregivers. Research from several years ago shows that women who have stressful jobs who are caregivers of parents experience cumulative stress.²⁹ Consider the implications of these findings in light of the stresses of occupational therapy with its typically female workforce. Occupational therapy practitioners who are also family caregivers are likely to experience the same consequences of caregiving as any other person who is also an employed family caregiver.

Health Professional Responses

Occupational therapy practitioners and other health professionals have an opportunity and even an obligation to make a difference in the lives and health of caregivers. Research documents a chance to improve the health of caregivers when the design of programs saves caregivers time; relieves them from their responsibilities, even briefly; and reduces stress and makes them feel valued and cared about. Ideally, routine integration of healthcare with community-based services will be available so that support for family caregivers becomes normal and support can begin before caregiver health declines.

Here are some ways that each occupational therapy practitioner can help:

• Assist patients and friends in recognizing the caregiving role and its implications. Many caregivers do not identify themselves in this way, confusing the designation "caregiver" with expanded definitions of spouse, parent, child, or even health professional.
• Ask and probe into the question, "Are you a family caregiver?" when taking occupational profiles for persons of all ages. Be prepared to offer resources and to encourage their utilization when the answer is "Yes."
• Look for early signs of common conditions associated with caregiving and address them through caregiver training. Pay particular attention to caregivers who are at most risk, including those who are elderly and those with limited socioeconomic resources.
• Include caregivers, including caregiving youth, as integral players in the healthcare team to develop a family-centered model of patient care.
• Encourage caregivers to achieve life/work balance, keep their own health as a priority, take regular respite opportunities, join support groups, and learn stress management techniques.
• Educate caregivers about resources in the community and on the Internet.
• Instruct caregivers of all ages in the provision of personal care, including proper body mechanics and other safety techniques to minimize the risk of injury.
• Volunteer in local support service programs to provide respite care and promote caregiver well-being.
• Educate occupational therapy practitioners and other healthcare professionals about the importance of family caregivers of all ages and the critical need to recognize, support, and advocate on their behalf.

As members of the healthcare team, occupational therapy practitioners must join forces with others to promote all aspects of later-life planning and thus demonstrate professional and personal commitment to strategies for effectively preparing for future care. Family caregivers need to protect their health and receive support with special attention for constant caregivers, elder spousal caregivers, youth caregivers, and those who are doing double duty between caregiving and employment.

National Caregiver Resources

American Association of Caregiving Youth (AACY) — provides information and resources for pre-teens, teens, families, and professionals; (561) 391-7401; www.aacy.org.

Children of Aging Parents (CAPS) — the oldest caregiving organization offering information and referrals, support groups, educational outreach, speaker's bureau, and publications; (800) 227-7294; www.caps4caregivers.org.

Family Caregiver Alliance (FCA) — provides information, education, research, services, and advocacy for family caregivers with information in English, Spanish, and Chinese; (800) 445-8106; www.caregiver.org.

National Alliance for Caregiving — an organization created in support of family caregivers of the elderly and the parties who serve them; (301) 718-8444; www.caregiving.org.

National Family Caregivers Association (NFCA) — free membership for all family caregivers, including a pharmacy discount program, toll-free advisory service, information, education, publications, and advocacy; (800) 896-3650; www.thefamilycaregiver.org.

Well Spouse Foundation — the international support organization for wives, husbands, and partners of the chronically ill and/or disabled; (800) 838-0879; www.wellspouse.org.

Internet Support — www.archrespite.org; www.benefitscheckup.org; www.caregiver.com; www.care-giving.com; www.caremanager.org; www.eldercare.gov; www.elderissues.com; www.myhealth.va.gov; www.strengthforcaring.com.

American Occupational Therapy Association — provides information for occupational therapy practitioners and consumers. www.aota.org.