Alzheimer's Disease and Caregiving

Three out of four people with Alzheimer's disease will end up in a nursing home unless better systems of community care and support are built in states. Even without robust systems, today, nearly 15 million caregivers provide care valued at $202 billion. 

 

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Alzheimer’s disease—a progressive and fatal condition in which cells in certain parts of the brain are destroyed—creates severe problems in memory, judgment, ability to organize simple tasks and even speech. The most common form of irreversible dementia, Alzheimer’s has no cure or even disease-modifying treatment.

Only 4 percent of the general population will be admitted to a nursing home by age 80; but for people with Alzheimer’s, 75 percent will end up in a nursing home by age 80.1 Among those nursing home residents with Alzheimer’s and other dementias, 51 percent rely on Medicaid for payment of care.2 Given the high cost of long-term care, this poses ongoing economic challenges to state Medicaid budgets—challenges that could be mitigated if an individual is able to delay entry into a long-term care facility. For this reason, states have a direct budgetary interest in policies that support family caregivers of individuals with Alzheimer’s disease.
 
The Stark Numbers
An estimated 5.4 million Americans are living with Alzheimer’s disease—5.2 million age 65 and over; 200,000 with younger-onset Alzheimer’s.3 Nearly 30 percent of Americans now have a family member with the disease.4 The number of Americans living with Alzheimer’s disease will increase as the number of people over age 65 increases. Forecasted state increases in people living with the disease between 2010 and 2025 vary from none in Pennsylvania and Rhode Island to as much as 53 percent in Colorado and 56 percent in Utah.

Most people survive an average of four to eight years after an Alzheimer’s diagnosis, but some live as long as 20 years.5 This prolonged duration often places increasingly intensive demands on family members and friends who provide care, which can take a deep physical and financial toll.

Nearly 15 million caregivers provide an estimated 17 billion hours of care each year for individuals with Alzheimer’s disease. The Alzheimer’s Association estimates the economic value of that care in 2010 totaled more than $202 billion.6

Caregiver health can be compromised: Many caregivers of people with Alzheimer’s experience poor health, multiplying the overall cost of the disease. Stress is well-documented as a health risk for chronic disease, and 61 percent of caregivers for people with Alzheimer’s or other dementia rate the emotional stress of caregiving as high or very high.7 Public health data from the Behavioral Risk Factor Surveillance System show that caregivers of people with Alzheimer’s and dementia are more than twice as likely as caregivers of people without these conditions to say the greatest difficulty associated with caregiving is that it creates or aggravates health problems.8
 
The physical and emotional toll on Alzheimer’s and other dementia caregivers results in $7.9 billion in higher health care costs for caregivers, according to 2011 Alzheimer’s Disease Facts and Figures.9 In addition, a 2006 study showed that spouse caregivers of people who were hospitalized for dementia were more likely than spouse caregivers of people who were hospitalized for other diseases to die in the following year, even after accounting for the age of the spouse caregiver.10
 
Caregiving affects caregiver financial security: Family and other unpaid caregivers often must reduce their hours of work—or even quit their jobs—resulting in a loss of job-related income and benefits, including retirement benefits. In a recent survey of Alzheimer’s and dementia caregivers, 61 percent of women and 70 percent of men said they had to go in late, leave early or take time off because of their caregiving responsibilities. About one in five had to take a leave of absence.11 One in five female caregivers say they have been penalized at work because they needed to care for someone with Alzheimer’s disease.12
 
While incomes tend to decrease, costs tend to increase. A 2004 Alzheimer’s Associaton study found that 49 percent of unpaid, nonspousal Alzheimer’s and dementia caregivers had caregiving-related out-of-pocket costs averaging $219 per month.13 The 2009 Evercare/National Alliance for Caregiving survey found that 65 percent of caregivers had difficulty paying for their own basic necessities and 63 percent found it difficult to save for their own retirement.14
 
Most caregivers are women: Women are at the epicenter of the Alzheimer’s epidemic. Of the 5.2 million Americans 65 and over with the disease, 3.4 million are women. And among the 14.9 million Alzheimer’s and dementia caregivers in the United States, 60 percent, or 8.9 million, are women.15 Thus, more than 12 million American women either have Alzheimer’s or are caring for someone with the disease. Given that 26 percent of family caregivers also have children under age 18 living with them,16 the U.S. has become a nation of women raising the youngest generation while simultaneously caring for the oldest.
 
High costs of institutional care: The physical and financial toll of caring for someone with Alzheimer’s or dementia makes it difficult to avoid eventually placing the individual with the disease in some form of institutionalized care. This has significant financial implications for state budgets. Average per person Medicaid payments for seniors with Alzheimer’s and other dementias are nine times higher than Medicaid payments for seniors without the disease. The Alzheimer’s Association estimates that Medicaid spending in 2011 on individuals with Alzheimer’s and other dementias will total $37 billion—and will increase nearly 400 percent, before inflation, by 2050.17
 

Policy Options

State policymakers can provide relief to family caregivers and reduce state Medicaid expenses by providing both direct and indirect support to Alzheimer’s caregivers. Several states have adopted programs that touch individuals and families directly. States also can become involved in planning and other activities that develop the infrastructure to support caregivers.

Program options:
  • Help Alzheimer’s caregivers locate and arrange care. In 2009, the North Dakota legislature passed the Dementia Care Services Act (House Bill 1043) to provide resources, care planning assistance and support to caregivers across the state. The intent of the act was to create a mechanism to help families navigate between health and social services and to more effectively utilize community services, including from the private sector. 

    The law calls for a study of the impact on nursing home long-term care costs under Medicaid and health cost outcomes of the intervention. The Center for Rural Health is conducting the evaluation and recently published its first preliminary findings. (Available at http://ruralhealth.und.edu/pdf/alzheimerspolicybrief1210.pdf.) Those findings indicate that families who participated in the Dementia Care Services Project had a “reduced intention for placement of persons with dementia in nursing homes.”18 Additional results will be released later this year.
     

  • Participate in the federal Alzheimer’s Disease Supportive Services Program. This program provides federal funding to states to expand the availability of community-level supportive services for individuals with Alzheimer’s disease and their caregivers. It funds both proven methods to deliver services as well as innovative ideas; it also supports efforts to translate evidence-based models into community-wide programs. Thirty-four states, the District of Columbia and Puerto Rico currently receive funds. More information on the Alzheimer’s Disease Supportive Services Program is available at http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Alz_Grants/index.aspx.
     
  • Promote use of evidence-based programs as part of home- and community-based services. A number of demonstration projects have shown positive impacts on caregiver and care recipient health and on reducing health care costs. For example, when spouse caregivers of someone with Alzheimer’s participated in a counseling program developed at New York University, the rate of nursing home placement dropped nearly 30 percent, with an average overall delay in placement of more than a year and a half.19 Counseling programs can be easily translated to community settings, and states can integrate them into home- and community-based services funded by Medicaid and state aging programs. Examples of such programs—many of which were initially funded through the ADSSP—are available at http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Alz_Grants/compendium.aspx
    evidence
    .
     
  • Shift priorities under the National Family Caregiver Support Program, which is implemented by state units on aging. This program offers a range of services to support family caregivers of older Americans. Under this program, states provide five types of services: (1) information to caregivers about available services; (2) assistance to caregivers in gaining access to the services; (3) individual counseling, organization of support groups and caregiver training; (4) respite care; and (5) supplemental services, on a limited basis. The most recent data available suggest that a majority of the funds are spent on information and assistance activities, with significantly less spent on individual counseling and caregiver training. Redirecting funds to place a greater emphasis on counseling, training and respite care would allow persons with Alzheimer’s disease to remain in community settings longer.
    In addition, the National Family Caregiver Support Program specifically allows Alzheimer’s and dementia caregivers to qualify for services even if the individual with the disease is under age 60. Very little data exists, however, as to whether services are reaching this younger-onset population. Lawmakers could request data to ascertain the extent of participation by this group of Alzheimer’s caregivers.
     
  • Expand respite services and adult day care. Almost all states offer some form of respite care and/or adult day services through a Medicaid waiver program. By tying these programs to Medicaid, however, states are reaching primarily the caregivers of the frailest and oldest individuals with Alzheimer’s disease—those whose nursing home placement may be imminent. This reduces any potential benefit that such services provide in delaying institutionalized care and thus saving Medicaid dollars. States could expand eligibility for respite services and adult day care to include individuals who are not Medicaid-eligible but with such services may be able to significantly delay placement in long-term care facilities. The Affordable Care Act provides states new options to expand respite services and adult day care.
     
  • Improve Medicaid home- and community-based services by providing assessment of caregiver health and needs. As states—for both budgetary and quality-of-life reasons—move more Medicaid-supported care to home and community settings, the needs of caregivers cannot be forgotten. Without willing and able family caregivers, many Medicaid home- and community-based care plans simply cannot be implemented.
     
    A family caregiver assessment can help identify a caregiver’s support needs and connect them with needed supports. Some programs focus assessment solely on the person with care needs, but assessing the caregiver’s health, willingness to provide care, and training and support needs would identify strategies and resources to enable caregivers to better care for themselves and the person for whom they are caring.
     
  • Support transportation services for caregivers and individuals with Alzheimer’s disease, and eliminate barriers for those with younger-onset Alzheimer’s—those under age 65—to utilize these services. Mobility is essential for caregivers and care recipients to access health care services and daily essentials such as grocery shopping. While many local transportation systems are accessible to seniors and the disabled in general, they often are not fully capable of meeting the particular needs of those with dementia. Furthermore, access can be especially difficult for individuals under age 60 with younger-onset Alzheimer’s disease because of statutory or regulatory restrictions that make only older individuals eligible for alternative transportation services.

Planning and Other Policy Activities:
  • Create a state Alzheimer’s disease plan: More than 30 states have published or are in the process of writing a state Alzheimer’s disease plan—a comprehensive blueprint to deal with the growing numbers of citizens with Alzheimer’s disease. State Alzheimer’s disease plans include strategies for improved caregiver support. Published state plans can be found at http://www.alz.org/join_the_cause_state_plans.asp.

 

  • Conduct caregiving surveillance through the Behavioral Risk Factor Surveillance System. Surveillance is a proven public health technique to develop data that can pinpoint problems, identify where resources are needed most and evaluate long-term results of interventions. Each state and territory public health department conducts an annual surveillance survey, known as the BRFSS. The Centers for Disease Control and Prevention has developed a series of 10 questions on caregiving to more fully assess the needs and health of caregivers that can be added to the annual survey. Since 2009, 16 states have added these questions to their BRFSS surveys, providing important planning data for service providers.
  • Encourage existing caregiver support programs to add health promotion and wellness activities.  Explicit messaging and outreach to caregivers regarding healthy lifestyles and wellness (e.g. maintaining a healthy body weight, regular physical activity, and tobacco cessation) can be a little- or no-cost initiative that improves the health and well-being of caregivers and reduces overall health care spending.
     
  • Engage caregivers to provide direct feedback in shaping programs. Pennsylvania and New York have considered developing family Caregiving Councils as a way of recognizing the vital role played by family caregivers and to give them a voice in policymaking. Many states also are developing coalitions to explore and plan respite programs, such as the Lifespan respite approach funded by the federal Administration on Aging (see http://archrespite.org/lifespan-programs), which could be a model for increasing participation.

Conclusion

Medicaid is the largest single item in many state budgets, and caring for people with Alzheimer’s is a significant driver of those costs, particularly because of the high numbers of people with the disease who end up in nursing homes. Studies have demonstrated that delaying entry into a long-term care facility reduces Medicaid spending, but it does not reduce an individual’s need for care—care that falls overwhelmingly on family and friends when provided in the home. Thus, to be successful in keeping those with Alzheimer’s and other dementias in the community and reducing overall Medicaid costs, states must find ways to support unpaid family caregivers.
 

References:

1. HM; Newmann, PJ; Lieberburg, IM; Townsend, RJ. “Lethality of Alzheimer’s disease and its impact on nursing home placement.” Alzheimer Disease & Associated Disorders 2010; 24(1):90-95.
2 Ibid.
3 Alzheimer’s Association. “2011 Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia Vol. 7, Issue 2. 
4 Shriver, Maria. "The Shriver Report: A Woman’s Nation Takes on Alzheimer’s.” Alzheimer’s Association; October 2010. 
6 Ibid.
7 Ibid.
10 Christakis, NA; Allison, PD. “Mortality after the hospitalization of a spouse.” New England Journal of Medicine 2006; 354:719-730. 
12 Shriver.
13 Alzheimer’s Association and National Alliance for Caregiving. “Families Care: Alzheimer Caregiving in the United States”. 2004. 
14 Evercare and National Alliance for Caregiving. “The Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving.” April 2008. 
16 Ibid.
17 Ibid.
18 Muus, K; Volkov, B; Klug, MG; Mueller, J; and Haley-Franklin, H. “Dementia Care Services project: Supporting Caregivers in North Dakota.” Center for Rural Health; December 2010. 
19 Mittleman, MS; Haley, WE; Clay, OJ; Roth, DL. “Improving caregiver well-being delays nursing home placement of patients with Alzheimer’s disease.” Neurology 2006; 67:1592-1599. 
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