costs and insurance

Additional Facts and Figures on Caregiving, Medical System from the Alzheimer's Association

Dorian Martin Health Guide January 11, 2010
  • In my last post, I shared some figures from the 2009 Alzheimer’s Disease Facts and Figures published by the Alzheimer’s Association. This week, I wanted to add some more pertinent information that can help inform those who have the disease as well as caregivers, policymakers and other interested parties. The information below is scary, not only for its impact on the individual and a family, but also the potential drag to the economy of the United States.


    -          Women make up approximately 60 percent of family and other unpaid caregivers to those with dementia.

    -          A study found that 87 percent of caregivers of people with dementia were taking care of a relative, especially a parent or parent-in-law (57 percent), a grandparent (11 percent), or a spouse (6 percent). The other 13 percent were caring for a non-relative, such as a friend or relative.

    -          In one study, 23 percent of caregivers of people with dementia live in the same household as the person for whom they were caring. In another study, 66 percent of people with dementia who were receiving long-term care insurance benefits lived with their caregivers.

    -          The age of caregivers varied greatly, although the average age was 48.  Nineteen percent of caregivers for people with dementia were under age 35 while 29 percent were ages 35-49. Thirty-seven percent were ages 50-64 and 14 percent were age 65 and older.

    -          Children are not exempt from caregiving. In a 2003 survey, 250,000 U.S. children ages 8-18 were unpaid caregivers for a person with dementia.

    -          Ten percent of the 9.9 million family and other unpaid caregivers for people with dementia live more than two hours away while 4 percent lived 1-2 hours away. This data indicates that from 990,000 to 1.4 million caregivers could be considered long-distance caregivers.

    -          Caregiving tasks to support people with dementia can include: grocery shopping, meal preparation, and providing transportation; administering medications and other treatments; managing finances and legal affairs; supervising the person to avoid unsafe activities; bathing, dressing, feeding and helping the person use the bathroom; making arrangements for medical care; and managing behavior symptoms.

    -          Family and other unpaid caregivers of people with dementia are more likely than caregivers of other older people to provide assistance with personal care such as getting dressed, bathing and dealing with bladder and bowel incontinence.

    -          When the person with dementia moves to a facility, the types of assistance provided by the family and other unpaid caregivers often changes. Many caregivers continue taking care of financial and legal affairs, make arrangements for medical care, and provide emotional support. Some caregivers still assist with bathing, dressing and other types of personal care.

    -          Thirty-two percent of family members and other unpaid caregivers have provided help for five years or longer while 39 percent have provided care for one to four years.

  • -          More than 40 percent of family and other unpaid caregivers describe the emotional stress of caregiving as high or very high.

    -          Approximately 33 percent of family caregivers of people with dementia have symptoms of depression.

    -          Seventy-two percent of family caregivers said they experienced relief when the person with dementia died. Many felt that caregiving during the period of time prior to death was extremely stressful.

    -          Placing a person with dementia in a nursing home can be as stressful for the caregiver as the time prior to placement.

    -          Family members and other unpaid caregivers of people with dementia are more likely to have high levels of stress hormones, reduced immune function, slow wound healing, new hypertension and new coronary heart disease than non-caregivers.

    -          Twenty-four percent of spouses who are caregivers of people with dementia had an emergency department visit or hospitalization in the previous six months.

    -          One study found that caregivers of people who were hospitalized for dementia were more likely to die in the following year than caregivers of people who were hospitalized for other diseases.

    -          Many caregivers of people with dementia quit work, reduced their work hours, or took time out due to caregiving responsibilities. One study found that 57 of family and other unpaid caregivers of people with dementia were employed full time or part time. Of those who were employed, 66 percent said they went in late, left early or took off because of caregiving. Eighteen percent took a leave of absence while 13 percent reduced their hours. Eight percent turned down promotions. Eight percent quit work entirely due to caregiving.

    -          Forty-nine percent of family and other unpaid caregivers of people with dementia (not including spouse caregivers had caregiving-related out-of-pocket expenditures averaging $219 a month.

    -          Long-distance caregivers had higher caregiving-related  out-of-pocket expenditures than other caregivers.

    -          Starting in 2003, Washington State and North Carolina have added questions about family caregiving for people with dementia to their annual Behavioral Risk factors Surveillance System survey. In addition, Los Angeles County added questions in 2007 about caregiving for people with dementia to its public health survey. In 2008, Florida, New York and Texas added questions about caregiving.

    -          The findings from the Washington State survey found that 18 percent of caregivers reported not having enough time for themselves while 14 percent don’t have enough time for their families. Thirteen percent said that caregiving created a financial burden. Over 33 percent said that information about local programs would help with caregiving while 30 percent indicated that money for additional resources would be beneficial. Twenty-five percent said respite care was important and 22 percent said family consultation or counseling would be helpful.


    The Medical System

    -          Most older people with dementia have Medicare. Their high use of hospital and other healthcare services translates into high costs for Medicare. Average Medicare payments per person for people 65 and older with dementia were almost three times higher than average Medicare payments for other Medicare beneficiaries in the same age group in 2004.

  • -          Average Medicaid payments per person for Medicare beneficiaries ages 65 and older with dementia were more than nine times higher than the average Medicaid payments for other Medicare beneficiaries in the same age group in 2004.

    -          The direct costs to Medicare and Medicaid for care for people with dementia and the estimated costs to businesses for employees who were caregivers of people with dementia amounted to more than $148 billion in 2005. These costs will continue to increase each year as the number of people with dementia grows due to the U.S.’s aging population.

    -          Older people with dementia have more hospital stays, skilled nursing home stays and home healthcare visits than other older people.

    -          Many services such as adult day center services, assisted living, and nursing home care are not affordable for long for most people with dementia or their families. Medicaid is the only federal program that covers long nursing home stays that most people with dementia require in the late stages of their illness, although this program requires beneficiaries to be poor to receive coverage.

    This data along with my previous sharepost really tells a stark tale of what those with dementia and their caregivers face. Alzheimer’s disease and other dementias are another type of terrorist that is lurking and waiting to harm not only individuals and their families, but the U.S. economy. This war is one that we need to win.