The Challenges of Caregiving in the African American Community Presented by Stephanie J. Monroe
Living longer and healthier • In 1900: – Life expectancy at birth was about 50 years – Top causes of death were pneumonia/flu and tuberculosis • Now: – Life expectancy increased by 50% (74+ years) – Pneumonia and tuberculosis now routinely prevented or treated with vaccines and antibiotics
How Does Alzheimer’s Impact African Americans?
African Americans are two to three times more likely to develop Alzheimer’s disease than non-Hispanic White Americans. Alzheimer’s disease is the 6th leading cause of death for all Americans and the 4th leading cause of death for older African Americans.
Numbers that are growing • Today, over 46 million people are living with dementia, and by 2050 this number will have risen to 131.5 million. • 5.4 million in the United States living with AD. At least 1 million are African Americans. • 15.2 million family and friends are caregivers • 17.2 billion hours uncompensated • $210.5 billion value of that care • 20% of non Hispanic White Americans are caregivers • 44% of Latinos and 34% of Blacks receive home-based family caregiving (Weiss et al 2005)
The Projected Costs of Alzheimer’s for African Americans from 2012-2050
Source: Authors’ calculations based on the 2010 MEPS, the 2010 & 2012 Alzheimer’s Disease Facts & Figures and the Census Bureau Data.
Disparate Impact on Women and Their Families
Source: Authors’ calculations based on the 2010 MEPS, the 2010 & 2012 Alzheimer’s Disease Facts & Figures and the Census Bureau Data.
Disparate Regional Impacts
Source: Authors’ calculations based on the 2010 MEPS, the 2010 & 2012 Alzheimer’s Disease Facts & Figures and the Census Bureau Data.
The Impact of Alzheimer’s Isn’t Equal
According to a report commissioned by the AAN, African Americans make up 13.6% of the U.S. population but bear over 33% of the costs of Alzheimer’s disease and other dementias.
The economic burden of Alzheimer’s for African Americans was $71.6 billion in 2012. Caregiving represents the bulk of these costs – more than 60 of these costs are borne by women and their families; close to half of the costs are concentrated in the southern states.
20% of non Hispanic White Americans are caregivers
34% of Blacks receive home-based family caregiving
African Americans between 40 and 64 lost $6.1 billion in labor market productivity due to Alzheimer’s – mostly from lost wages
Source: The Costs of Alzheimer’s and Other Dementia for African Americans, September 2013; Gaskin, D., et al; Johns Hopkins Bloomberg School of Public Health
What does this mean for Black families?
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Care Impact on working families •
Ethnic minorities provide more care than their counterparts
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African American caregivers report: – Less stress and more rewards as caregivers than white caregivers (Haley et al 2004) – Worse health (McCann et al 2000)
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It is not an easy burden for the younger generation. Black caregivers tend to have less money than most white families caring for an elderly relative, so they bear a disproportionately higher burden of the care themselves because they can not afford to hire help.
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They are also much more likely to have the additional responsibility of children at home. More than half of all black caregivers have one or more children younger than 18 at home, compared with 39 percent of white caregivers. Many of the black caregivers are single working mothers. Thirty-four percent of blacks older than 65 live in multigenerational homes, compared with 18 percent of whites. More than 50% of African American caregivers find themselves sandwiched between caring for an older person and a person under 18.
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66 percent of African American caregivers are employed either full or part-time. 50% have to change their work schedule. •
Source: Caring.com
Unequal access • African American residents were more likely to be found in nursing homes (24 percent) than in all three types of AL, whether smaller (13 percent), traditional board-and-care (5 percent), or newer apartment style models (4 percent). • Price may explain some of these differences, given lower income levels and higher poverty rates among older people of color. • AL residences are also less likely to be found in counties with a higher proportion of minorities (Stevenson and Grabowski, 2010). • Unequal access to newer, less institutional apartment style settings • Though most older adults in the US live in metropolitan areas, many older people of color live in rural areas where there is lower access 11
Characteristics of AL with large minority demographic • Smaller, older, have lower monthly charges, and employ minority administrators. • Living units are more likely to be bedrooms with shared bathrooms rather than private apartments. • Residents are more likely to be younger, Medicaid eligible, and have developmental disabilities or chronic mental health issues. • Possibly, too, these smaller AL homes serving minority residents face greater hardships related to the growing burden of regulatory requirements (Carder, Morgan, and Eckert, 2006) 12
Home Ownership • States with the highest black home ownership are also the states with large percentage of elderly and those experiencing Alzheimer’s Disease.
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Decision making - Cultural barriers Views on In Home Care
Views on Out of Home Care
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Family- based setting Freedom/Independence Spacious Familiar surrounding & community • Private • Home with Happy Memories • Caregiving is a labor of love celebrating death as part of the rhythm of life
Institutional setting Dependence/restriction Your own “room” Strangers in a strange land Communal Facility with Sad and sick people • Not providing direct caregiving makes you a selfish person 14
Decision making: Fear of Uneven Quality • Fear of poor quality: – 2011 study in the Journal of the American Medical Association showed patients in homes with largely African American clients get more bed sores. – Health Affairs study documented that African Americans in long term care tend to receive less flu shots, receive less pain treatment and good end-of-life care – In 2014 U.S. Department of Health and Human Services’ Inspector General reported that one-third of skilled nursing patients were harmed in treatment. Forty percent of those 65 and older will spend time in a nursing home at some point.
Decision making: Addressing Cost as a Barrier • High monthly costs and limited financial assistance continue to be the main access barriers. • Most older adults have incomes well below what a typical AL community charges. In 2008, the average base annual cost of AL was about $36,000 per year (MetLife, 2008) yet at least 77 percent of adults ages 80 or older have incomes below this amount.
A History Lesson April 10, 1827. The birth of Eliza Bryant in 1827 is celebrated on this date. She was a Black abolitionist and businesswoman. She grew up on a plantation in Wayne County North Carolina her parents were Polly Simmons, a slave, and her master. In 1848 her mother was freed and her family moved north, purchasing a home in Cleveland, Ohio with funds from her master. Young Bryant’s education is unknown but she was a pioneer in the movement to welcome and assist Blacks to the Cleveland area, particularly those moving from the southern states through the Great Migration after emancipation. It was here that she learned of the special needs of elderly Blacks left alone due to slavery. At the time facilities denied access to Blacks and Bryant, and around 1893 her and others established a home for aged Blacks. In January 1895 a board of trustees was named and the “Cleveland Home for Aged Colored People” opened on August 11, 1897. Bryant married and had several children. She died on May 13, 1907 in Cleveland, Ohio and is buried in Woodland Cemetery. Reference: WOMEN IN HISTORY P.O. Box 770682 Lakewood, OH 44107I
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