Policymakers are beginning to recognize the critical role of families in the provision of long-term care as a way to help control rising costs of care. Four main public policy approaches are promoted to support caregiving families: (1) direct services; (2) financial incentives and compensation, including direct payments and tax incentives; (3) the cash-and-counseling model; and (4) employer-based mechanisms.
Direct Services to Support Family Caregivers
Home and community-based services can help care for the caregiver by directly assisting families in their day-to-day caregiving responsibilities. Caregiver-specific services have the potential for reducing caregiver distress and improving coping skills so that families can continue to provide care. Direct services complement and assist families without supplanting their caregiving roles.
"When I compare past with present it makes me very sad and depressed. I try to think positive most of the time. [I feel fearful] only when his condition worsens. Many nights I am up with him at least two or three times per night."
(54-year-old wife caring for her husband,
who suffers from Alzheimer's disease)
Support services needed by family caregivers may include a range of information and emotional and financial supports. Most caregiver support programs are provided through voluntary agencies (e.g., the Alzheimer's Association or the American Cancer Society) or through limited state programs funded under Title iii of the Older Americans Act, Medicaid waivers, or state general funds. Eligibility for these programs is often restricted by age, diagnostic group, or income. (See page 00 for examples of state programs.) Moreover, many states have gaps in available services or have no caregiver support programs at all.14
Recent research on caregiver support services has shown very promising results. In a study investigating patterns of service use for one type of respite service (adult daycare) for caregivers of persons with dementia, researchers found that the sustained use of adult day services by caregivers of persons with dementia can substantially reduce their levels of caregiving-related stress and improve their mental health.75 In a longitudinal study of family caregivers of people with Alzheimer's disease, researchers found that caregivers who used ongoing education, attended six sessions of counseling, and participated in a support group were 35 percent less likely to place their spouse in a nursing home than those in the control group. Spouse caregivers who received this combination of caregiver support services deferred institutionalization of their spouse by an average of 329 days.76
Information and assistance are the number-one need of family caregivers.77 More often than not, the average family is unaware of services available in the community and the means of gaining access to them. Information is needed on how and where to get help, implications of a diagnosis, costs of care, and how to plan for future care needs. Increasingly, families are using the Internet to access information on caregiving and available services.
Long-term-care planning and care management help assess the needs of families and the impaired person, explore courses of action and care options, and arrange any necessary support services in the community. Helping the family respond to crises and adjust to new daily routines is essential to help families cope over the long-term.
Support groups emphasize coping strategies and peer support to help caregivers.78 Support groups are offered by organizations representing nearly every form of chronic illness (e.g., Alzheimer's disease, stroke, cancer) and are very popular.79
Counseling assists families in solving problems and in resolution of psychosocial issues related to caring for the impaired person.80 Psychoeducational (group) models are also effective and are intended both to provide information and to help caregivers develop a specific set of coping skills.79
Respite care addresses one of the most pressing needs identified by families, namely, temporary relief to reduce the strain that caregivers experience on a day-to-day basis.5,81 Respite care can allow time to go to the doctor or the grocery store, participate in a support group, or attend a class to learn caregiving skills.5 A unique feature of respite care is the help it offers to both the caregiver and the care recipient. Respite care can be provided at home (in-home care), or in a group or institutional setting (out-of-home services). Out-of-home services include adult day centers, foster homes, nursing homes, hospitals, respite camps, and other facilities. Researchers have suggested that respite care can relieve the burden of the caregiving situation and allow families to continue to care for loved ones who would otherwise have been placed in a nursing home.78,82 Families who have used respite programs overwhelmingly value the service and report high levels of consumer satisfaction.5,81,83
Home modification programs help caregivers adapt their homes to make it possible to provide care. Very limited resources are available for home repairs. There is generally no reimbursement for consumable supplies (e.g., incontinence products) purchased by family caregivers at home.
Legal and financial planning are key services to help families plan for the costs of future long-term care and to make arrangements for medical decisions and advance directives. Cognitive impairment, in particular, creates complex legal and financial problems for impaired persons and their families, who may need advice on property rights, contracts, estate planning methods, durable powers of attorney, conservatorships, and other matters.
Education and training programs can effectively help families with practical advice regarding day-to-day concerns. Research has shown that these programs can produce positive outcomes for the caregiver84,85 and delay nursing home placement.85
Financial Incentives and Compensation
Financial incentives and compensation can take several forms:
Direct payments to families take many forms and embody the emerging trend in consumer-directed care. Generally, programs provide family caregivers with cash grants or vouchers to purchase services for the care of their older relative. The justifications for family payments arise out of commitments to support family care, the lack of other resources, and the desire to minimize long-term-care costs.86 At present, thirty-five states have programs that pay family caregivers for the provision of homemaker, chore, or personal care services.86 Of these, thirteen states use Medicaid waivers to pay family members to provide care to a functionally impaired relative; the rest use state funds as the source of funding for family compensation.86,87
There are several disadvantages to direct payments to families as they now exist. Nine out of the thirty-five states (about 25 percent) require caregivers to give up outside employment if they are receiving caregiver compensation. This strategy provides little relief to caregivers to replace lost income. Other program restrictions include kinship criteria (e.g., excluding adult children, or grandparents caring for grandchildren), living arrangements (e.g., excluding caregivers who do not share a household with the care recipient), and type of services covered.86,87
Tax incentives have gained more political appeal among some policymakers recently because they are relatively easy to administer and have a cost-sharing component. Tax incentives generally include deductions or credits.
The two main types of tax deductions are adjustments to gross income or itemized deductions from taxable income. Tax deductions tend to favor higher-income people, giving them more subsidy per dollar deducted than taxpayers in lower-income brackets.15,88 Beginning in 1997, out-of-pocket expenses for long-term care, including custodial care and long-term-care insurance premiums, are deductible as medical expenses. The expenses must be for care for a "chronically ill individual" who needs help with at least two adls or requires "substantial supervision to protect against threats to health and safety due to severe cognitive impairment."62
The other major tax strategy is the use of tax credits. Unlike tax deductions, tax credits generally benefit low-income taxpayers. Tax credits usually require the caregiver to live with the care recipient and be employed outside the home. These requirements tend to limit the use of this tax strategy, particularly when one family member--usually the female spouse--has the full-time job of caregiving.87
Cash-and-Counseling Model
A promising consumer-directed strategy is the cash-and-counseling model. This model combines elements of financial support with direct services, such as information and counseling, to help consumers make informed choices about long-term care. At least ninety-four countries have governmental programs that provide cash allowances to disabled individuals who require supervision or assistance with activities of daily living or household tasks. Not only is this option appealing to people with disabilities and to their families, but it could prove successful to the federal government and to states as a cost-effective use of limited long-term care resources.89
"My health has suffered and my blood pressure went up. I cry often; it's not a bowl of cherries. I hope I'll have enough money to live on."
(83-year-old husband caring for his wife,
who had a stroke nine years ago)
The national cash-and-counseling demonstration project for Medicaid recipients of long-term care is now underway in four states (Arkansas, Florida, New York, and New Jersey), funded by The Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. Under this demonstration project, older and younger people with disabilities will choose between traditional case-managed personal assistance services and cash grants along with information services. The cash component provides monthly cash allowances, and the counseling component provides people with consumer information, advice, and assistance to help them direct their own care. Possible uses of the cash include purchasing services from a homecare agency, paying a relative or friend to provide personal care, or purchasing respite care. Proponents of this model cite several potential benefits including the following: (1) empowerment of consumers, (2) support for families and other informal caregivers, (3) a unified model for serving persons of all ages with disabilities, (4) lower unit costs of care and lower total costs to governments, and (5) encouragement of consumer-directed chronic care systems.89 Use of the cash-and-counseling approach, however, raises quality assurance concerns that must be addressed at both the national and state levels.
California's statewide system of Caregiver Resource Centers (CRCs) for families and caregivers of cognitively impaired adults offers a similar option to caregivers through the use of respite vouchers along with ongoing support services. Research has shown that this consumer-directed "direct pay" program (wherein caregivers are given vouchers to hire and manage their own respite workers) is both preferred by caregivers and more cost-effective than the agency-based program (wherein caregivers are given vouchers to purchase service hours from homecare agencies under subcontract with the CRC).90
Employer-Based Mechanisms
Increasingly, both public and private employers are using either unpaid leave for caregiving or dependent care assistance plans to provide indirect financial assistance to caregivers. Enactment of the Family and Medical Leave Act (FMLA) of 1993 was an important first step by the federal government in helping protect the jobs and work benefits of employees who also have family care responsibilities. The law permits full-time employees to take up to 12 weeks of unpaid leave per year for a birth or adoption or to care for an ill child, spouse, or parent. While providing an important measure of basic job security for workers who have caregiving responsibility, the law contains a number of restrictions that dilute its usefulness. Principally, the law provides unpaid leave, thus, for family caregivers who cannot afford lost income, the time off may not meet their real needs. Additionally, the law covers only about 11 percent of American worksites and 60 percent of American workers;91 those who work in small businesses are not covered by the federal law. Workers caring for an aunt or uncle, a sibling, a grandparent, or an unmarried partner also are not covered.
"My most stressful moments have occurred when I had a job in the shop which was on a tight schedule and it seemed that mother was calling me into the house every five minutes. I now wear a stop watch while working so that I can keep track of exactly how much time I do spend on a job. I punch it off when she calls me into the house and punch it back on when I'm working again."
(40-year-old daughter caring for her mother,
who has a brain tumor)
As of July 1992, some thirty-one states had passed some type of family and medical leave legislation.92 There is a great deal of variation in the provisions in each of these laws, with some states offering more generous benefits than others. State experience with leave legislation has shown that most of the beneficiaries use leaves for the birth or adoption of a child rather than for care of an ill child, spouse, or parent. Whether more caregivers will use this benefit as it becomes more known remains to be seen.92
A dependent care assistance plan (DCAP) is another mechanism used by some employers. Under the federal tax code, the federal government allows employers to provide employees with up to $5,000 in dependent care assistance annually. A number of restrictions regarding eligibility, allowable expenses, and definition of "dependent" limit the dcaps utility for care of older people.87,92 Typically, DCAPs have been for childcare rather than eldercare expenses.92
Direct Services vs. Financial Support Strategies:
Is One Preferable to the Other?A number of studies have examined caregiver preferences for dollars versus services. Caregivers generally prefer services which provide relief from daily caregiving and increase coping skills over financial supports.17,22,92 In one study, over 80 percent of families chose a support service rather than financial support.88
It is crucial to advocate for policies that enable families to continue to provide care. Public policies are needed to provide both direct services and financial support strategies. Moreover, policymakers need to recognize and address the real need of older people and their families: To ensure access to quality, affordable long-term care, in the least restrictive setting for the person needing care, that best meets family needs.14 What public policy can and must do is guarantee a national program that protects families from the emotional and financial bankruptcy that are often the result of providing long-term care.
Talking Points
- Four main policy strategies currently support caregiving families: (1) direct services (e.g., respite care); (2) financial incentives and compensation, including direct payments and tax incentives; (3) the cash-and-counseling model; and (4) employer-based mechanisms. All are limited in scope.
- Cash and counseling is a promising consumer-directed model that combines the elements of financial support with direct services to help consumers make informed choices about long-term care.
- Research has shown that most caregivers prefer services to dollars.
- Public policy must guarantee a national program that protects families from the emotional and financial bankruptcy that can be the result of long-term care.
American Society on Aging
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