Kathleen A. Cameron
Kelly Niles

They’re the unsung heroes of chronic care, toiling long hours, day in and day out, to care for disabled relatives — untrained, unpaid, and often at great personal sacrifice. Here we’ll explore the growing importance of family caregivers, the broad scope of caregiving roles and situations, and what pharmacists can do to facilitate the caregiving process.

Family caregivers — the legions of ordinary people whose selfless commitment and caring enable millions of disabled Americans at risk for institutionalization to remain at home — have only recently begun to attract the attention and recognition they deserve for the critical role they play in the nation’s health care system. This long-overdue recognition is reflected in the increasing number of caregiver support services available and recent proposals from both Congress and the Clinton administration to ease the often staggering financial and emotional burden family caregivers bear.

Family caregivers have always been the cornerstone of long-term care in the United States. In the absence of a national, federally funded long-term care system, family caregivers give tirelessly of their time and energies to support the needs of an ever-growing population of individuals with chronic illnesses or disabilities. By doing so, they help meet a critical need not addressed by Medicare, which doesn’t cover long-term care expenses beyond home health care associated with an acute illness and time-limited skilled nursing facility care, and Medicaid, which provides long-term care services only for those who meet strict eligibility requirements based on income and assets. Because few or no affordable service options are available in many communities, family caregivers are often the first and last line of support for older people and younger persons with disabilities.

The relationship between caregiver and care recipient is complex. Stress levels may be high at times, but with appropriate support, caregivers can find creative ways to cope.

Who They Are and What They Do

The term “family caregivers” encompasses spouses, adult children, parents, other relatives, friends, and neighbors who provide unpaid help to people limited in their ability to perform at least one activity of daily living (ADL), such as bathing, dressing, feeding, and toileting.¹ Family caregivers — sometimes referred to as “informal caregivers” — come from all walks of life and all age groups. Almost 75% of caregivers are women. Most caregivers are relatives, but 15% of caregivers assist friends or neighbors.²

The profile of the typical caregiver for an older person is an employed 46-year-old woman with children. She spends approximately 18 hours per week caring for her mother, who usually lives nearby.² The typical care recipient is a 77-year old woman who lives alone and has a chronic debilitating illness.²

Beyond this typical caregiving scenario, thousands of parents care for their mentally retarded or developmentally disabled children; approximately 7% of children have disabilities that limit their normal activities and require assistance with a major life activity.³ In addition, many adults aged 18–64 with physical and mental disabilities rely on family members and friends for a substantial portion of their supportive care.

The relationship between caregiver and care recipient is complex. Stress levels may be high at times, but with appropriate support, caregivers can find creative ways to cope. Just being aware of the resources available to caregivers may help lessen feelings of being overwhelmed.

In addition to the formidable task of providing ongoing supportive care to a friend or relative, the caregiver may also be responsible for managing medications — a task that can be made easier with the help of a pharmacist. In many cases, this is a make-or-break issue: Appropriate medication management is often the most vital link to keeping loved ones at home; inability to manage medications is one of the top reasons for admission to an assisted living or skilled nursing facility.

The High Price of Caregiving

Because family caregivers tend not to self-identify, precisely gauging the number of caregivers in the United States is difficult. However, according to the 1997 National Caregiver Survey, conducted jointly by the National Alliance for Caregiving and AARP, more than 22 million American households — nearly one in four — are involved in family caregiving.² Twenty-two percent of all caregivers of those aged 50 and over are caring for a relative or friend with Alzheimer’s disease or a related disorder; that’s nearly 5 million U.S. households.⁴

Recent surveys have estimated that family caregivers provide approximately 80% of the care for older Americans.² Among older persons who live in the community and need assistance with ADLs, 95% have family members involved in their care.² Family caregivers allow care recipients to remain where they most long to live — in their own homes. Caregiving does not, however, end when the care recipient enters an assisted living facility, nursing home, or other long-term care facility, as caregivers are frequently involved in many aspects of care for persons in institutional settings.

A recent study by the Alzheimer’s Association (AA) estimates that caregivers contribute an amazing $196 billion annually to the U.S. health care and long-term care systems. These “invisible” costs represent the contributions of millions of caregivers across the country who provide countless services to persons with disabilities. The new study — the first to tabulate caregivers’ enormous impact on a state-by-state basis — also revealed that 30% of caregivers’ overall $196 billion contribution can be attributed to their support and assistance of persons with Alzheimer’s disease.

Results of the AA study clearly reveal that family caregiving has long been a major but largely unrecognized source of financial relief to national and state governments wrestling with the high health and long-term care expenses of persons of all ages with disabilities. The costs to caregivers are significant in terms of not only the monetary expenses, but also the significant time, physical, and emotional sacrifices caregiving entails.

The Range of Caregiving Tasks

For persons with cognitive impairments such as Alzheimer’s disease and mental retardation, caregivers also provide help with instrumental activities of daily living (IADLs) such as shopping, light housekeeping, money management, communication, and transportation. In addition to assistance with ADLs and IADLs, caregivers frequently find themselves engaged in other roles: information seeker, care manager, caregiver advocate, and surrogate decision-maker, to name just a few.

One particularly critical IADL is the management and administration of medications, a task commonly handled by caregivers. For example, survey research has shown that 37% of caregivers help their friends or relatives with medication management.² Caregivers for people with Alzheimer’s disease commonly report problems with getting their relative or friend to take medications on time, in the right amount, and as directed.² Caregivers typically report that their knowledge of care recipients’ medications — intended uses, side effects, possible interactions — is greater than that of the recipients themselves.²

A Case Study in Caregiving Mrs. Green is an elderly woman who has lived independently for many years. She fell recently and fractured her hip. She was hospitalized for surgical repair of the hip and subsequently transferred to a rehabilitation facility. Mrs. Green also has high blood pressure and diabetes. Mrs. Green’s daughter, Maryanne, became the primary caregiver for her 75-year old mother. Since Maryanne’s mother was sent home from the rehabilitation facility, a constant stream of health care providers have been in and out of her house. Maryanne takes her mother to doctor appointments and visits on weekends to do heavy housework and prepare meals for the coming week. Since her fall, Mrs. Green has been in considerable pain and for the first time seems to be confused about taking her diabetes and hypertension medications. In her caregiver role, Maryanne also monitors the activities of the home health aide, occupational therapist, physical therapist, visiting nurse, and the homemaker who comes in several times a week to help her mother tidy up the house. It seems to Maryanne that some of the health care providers are not always fully aware of treatments provided by others, that sometimes her mother gets overlapping or conflicting directions from different health care providers, and that no one person is in charge of coordinating the overall plan. Maryanne is also concerned about her mother taking all her medications: analgesics for her hip injury, diabetes medication (which entails glucose testing), and several antihypertensive medications. She spends hours each week reminding her mother to take the various pills properly, calling her mother’s doctors and pharmacist about side effects she observes, checking with the home care providers to see if her mother took her pills, and going back and forth to the pharmacy to pick up prescriptions. Asked to describe her biggest challenge as a caregiver, Maryanne replies, “Keeping everything straight in my mind.”

Rewards and Sacrifices

Almost 50% of caregivers report that caregiving has caused them to have less time for other family members, and 43% of caregivers report giving up vacations, hobbies, or other activities. In what has become known as “the sandwich generation,” 41% of caregivers are caring for children under 18 at the same time they are caring for a friend or relative.

Surprisingly, only 15% of caregivers report experiencing physical or mental health problems due to caregiving;² the percentage is considerably higher, however, among the growing subgroup of caregivers who provide support and assistance to persons with dementia. Depression among caregivers is also very common, with some studies indicating rates of depression as high as three times those reported in the general population.

According to survey data, the number one stress coping mechanism of most caregivers (74%) is prayer.² Talking with friends and relatives, exercise, and hobbies are also frequently mentioned as important coping strategies. Only 16% of caregivers receive formal help from counselors or other professionals in coping with stress.²

As previously mentioned, the financial burden of caregiving is tremendous. In addition to the $196 billion in “invisible” costs associated with caregiving each year, caregivers report spending $2 billion per month out of pocket for groceries, medicine, and other cash supports for their relatives; half of all caregivers spend their own money, at an average of $171 per month.² A limited number of state-funded programs pay family caregivers for the services they provide to loved ones, but these programs only scratch the surface in addressing caregivers’ actual needs.

Sixty-four percent of caregivers work full- or part-time. The economic cost of caregiving in terms of absenteeism and lost productivity runs in the billions of dollars each year. According to a survey conducted by the National Alliance for Caregiving and the insurance company MetLife, caregiving costs employers $11.5 billion annually — and that estimate takes into account only those working caregivers who provide hands-on care. If long-distance caregivers and those performing IADLs are included, that estimate rises to $29 billion in lost productivity. Six percent of working caregivers surveyed report giving up work entirely due to caregiving; another 4% take early retirement.⁶

The economic cost of caregiving in terms of absenteeism and lost productivity runs in the billions of dollars each year.

New Support Initiatives

To that end, President Clinton’s proposed “Long-Term Care Initiative” to support family caregivers is an important first step in focusing attention on the needs of family caregivers. As part of the federal Reauthorization of the Older Americans Act, this initiative includes a $1,000 tax credit designed to partially offset the personal costs of family caregiving. Plans for a federally funded “National Family Caregiver Support Program” are also being discussed. Under this proposed Older Americans Act program, state Offices on Aging, working in partnership with local Area Agencies on Aging, community service providers, and consumer organizations, will be expected to put in place five program components:

• Provision of information to caregivers about available services
• Assistance to caregivers in gaining access to such services
• Individual counseling, organization of support groups, and provision of caregiver training to help families make decisions and solve problems relating to their caregiver roles
• Respite care to enable families and other informal caregivers to be temporarily relieved from their caregiving responsibilities
• Provision of limited supplemental long-term care services to complement the care provided by caregivers and other informal caregivers.

One of the important purposes of respite is to give caregivers time to themselves and temporarily relieve the stress they may experience while providing extra care for a person with a disability.

An Expanding Array of Resources

Geriatric Care Managers (GCMs) are professionals who specialize in assisting older people and their caregivers with long-term care arrangements. GCMs have extensive knowledge about the costs, quality, and availability of community services and can play a critical role in assisting caregivers with information-gathering tasks. They typically have formal training in gerontology, social work, nursing, or counseling. GCMs can help caregivers by conducting care-planning assessments to identify problems, eligibility for public assistance such as Medicaid, and need for services; screening, arranging, and monitoring in-home help or other services; and crisis intervention. In assisting long-distance caregivers, GCMs act as a liaison to families at a distance, making sure things are going well and alerting families to problems. GCMs can also assist with the often difficult task of moving an older person to or from a retirement complex, assisted living facility, or nursing home. Consumer education and advocacy, caregiver counseling and support, family or individual therapy, money management, and conservatorship or guardianship assistance are other services provided by GCMs.

Respite Care is perhaps the most important service available to caregivers. Respite refers to short-term, temporary assistance provided to people with disabilities in order that their families, neighbors, or friends can take a break from the daily routine of caregiving. One of the important purposes of respite is to give caregivers time to themselves and temporarily relieve the stress they may experience while providing extra care for a person with a disability. These services may sometimes involve overnight care for an extended period of time. Respite care enables families to take vacations, or just a few hours of time off. Respite is often called “the gift of time.”⁷ Although formal respite services may not be available in every community, caregivers need to find and use these services or create them if they do not exist. For example, caregivers may want to request that family members and friends assist with caregiving tasks for a few hours on a regular basis.

Adult Day Services are another important form of respite care. These services are provided through community-based group programs designed to serve the needs of physically and/or cognitively impaired adults requiring supervision, increased social opportunities, or assistance with personal care or other daily living activities.⁸ These structured, comprehensive programs provide a variety of health, social, and related support services in a protective setting. Adult day centers generally operate programs during normal business hours five days a week. Some programs offer services in the evenings and on weekends.

In addition to these services, many other resources are available for caregivers. Organizations such as the National Alliance for Caregiving and American Association of Retired Persons (AARP) offer information to address a variety of caregiving issues, as well as provider referral services and programs for both care recipients and caregivers. In addition, local chapters of disease-specific associations such as the Alzheimer’s Association, ALS (amyotropic lateral sclerosis) Association, and American Parkinson’s Disease Association provide assistance for caregivers, including regularly scheduled support group meetings. Support groups can lessen the sense of isolation and stress that caregivers often experience. Local libraries are also a valuable resource for information.

In assisting caregivers in their efforts to keep medications straight, pharmacists should either offer to provide or help caregivers make a list of all the medications taken by the care recipient. This list should include name of medication and dose, purpose of medication, dosage form, instructions for use, and side effects.

How Pharmacists Can Help

As the case study clearly illustrates, caregivers often struggle with keeping medications straight in their minds. Pharmacists are the first source of information about all aspects of medication management and can be a key resource in assisting caregivers with this critical IADL.

Caregivers have a range of questions about the medications their loved ones take: What is the purpose of a medication regimen or specific medications? What side effects or adverse drug reactions should I watch out for, and what should I do if they occur? What should I do if a dose is missed or too much medication is taken? When should medications be taken in relation to meal times? What over-the-counter medications should be avoided because of potential drug-drug or drug-disease interactions?

Other, more complex questions from caregivers may involve how to comprehensively manage multiple chronic conditions and avoid geriatric syndromes such as falls and urinary incontinence.

In assisting caregivers in their efforts to keep medications straight, pharmacists should either offer to provide or help caregivers make a list of all the medications taken by the care recipient. This list should include name of medication and dose, purpose of medication, dosage form, instructions for use, and side effects. This medication record must be updated whenever a change in medication, dosage, or instructions for use is made. Caregivers should be told to keep a copy of this record with them and the care recipient at all times and to share the record with all physicians seen by the care recipient.

Because caregivers often administer medications, they need instructions on how to give medications to their loved ones. These instructions are particularly important for dosage forms such as liquids, inhaled medications, injectables, and suppositories. In addition, information about the various types of compliance packaging, such as weekly medication boxes, and suggestions from pharmacists about what compliance package might be most appropriate can be extremely helpful to caregivers administering medications.

By helping caregivers manage medications for care recipients, pharmacists are ensuring that care recipients’ medications are the most appropriate, the most effective available, the safest possible, and are used correctly. This assistance will ease the minds of caregivers, relieve their stress, and make the caregiving experience more manageable.

References

1. Administration on Aging, U.S. Department of Health and Human Services. Honor the Past, Imagine the Future: Towards a Society for All Ages [conference]; Baltimore, MD, April 1999.
2. AARP, National Alliance for Caregiving. Family caregiving in the U.S.: findings from a national survey, June 1997.
3. National Institute for Disability and Rehabilitation Research. Chartbook on disability in the United States. Washington, DC; U.S. Department of Education, 1996.
4. Alzheimer’s Association, National Alliance for Caregiving. Who cares? Families caring for persons with Alzheimer’s disease. February 1999.
5. Arno P, Memmott M, Levine C. Economic value of informal caregiving in the United States, by states. Chicago: Alzheimer’s Association; 1999.
6. MetLife, National Alliance for Caregiving. The MetLife study of employer costs for working caregivers, June 1997.
7. U.S. General Accounting Office. Respite care: an overview of federal, selected state and private programs. Washington, D.C.: GAO; 1990 (report no. GAO/HRD- 90-125).
8. National Adult Day Services Association. Adult day services fact sheet. National Council on the Aging, Inc.; 1999.