Life As A Caregiver

Michele Phillips - chef, baker, culinary writer, and mom - and Debra Jones - recently retired, partner, and an outstanding community member and VOA member - join Health Chatter to share their experiences as caregivers.

For more research information and caregiving statistics check out our website at healthchatterpodcast.com

Brought to you in support of Hue-MAN, who is Creating Healthy Communities through Innovative Partnerships. More about their work can be found at http://huemanpartnership.org/

Pre-Show Research 

• Demographics (https://www.caregiver.org/resource/caregiver-statistics-demographics/)
• Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
• About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
• Economic Value (https://www.caregiver.org/resource/caregiver-statistics-demographics/)
• The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
• At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year, and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
• The economic value of the care provided by unpaid caregivers of those with Alzheimer’s disease or other dementias was $217.7 billion in 2014. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
• Gender (https://www.caregiver.org/resource/caregiver-statistics-demographics/)
• 65% of care recipients are female, with an average age of 69.4. The younger the care recipient, the more likely the recipient is to be male. 45% of recipients aged 18-45 are male, while 33% of recipients aged 50 or higher are male. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. [Institute on Aging. (2016). Read How IOA Views Aging in America.]
• Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one’s personal care. About 14.5 million caregivers are males out of the 43.4% who care for an older family member. [National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S.]
• 5 challenges (https://www.efamilycare.com/articles/caregiver-challenges/5-challenges-caregivers-face)
• Isolation 
• Burnout 
• No professional resources 
• Financial strain 
• Lack of support 
• 7 reasons to love it (https://sunriseservicesinc.com/reasons-being-a-professional-caregiver/)
• Enormous difference in peoples lives 
• Essential work 
• New family 
• Great stories to hear from clients 
• Work from home
• Perfect cooking skills 
• Opportunity for continuing to learn skills 
• https://www.commonwisecare.com/first-day-as-a-caregiver/
• What you need to know on your first day
• More than a job, you are a companion 
• On average, caregivers spend: (https://www.caregiver.org/resource/caregiver-statistics-demographics/)
• 13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication;
• 6 days per month on feeding, dressing, grooming, walking, bathing, and assistance toileting;
• 13 hours per month researching care services or information on disease, coordinating physician visits or managing financial matters. [Gallup-Healthways. (2011). Gallup-Healthways Well-Being Index.]
• Of family caregivers who provide complex chronic care:
• 46% perform medical and nursing tasks;
• More than 96% provide help with activities of daily living (ADLs) such as personal hygiene, dressing and undressing, getting in and out of bed, or instrumental activities of daily living (IADLs) such as taking prescribed medications, shopping for groceries, transportation, or using technology, or both. [AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.]
• On average, caregivers perform 1.7 of 6 ADLs, most commonly getting in and out of beds and chairs (43%). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• On average, caregivers perform 4.2 of 7 IADLs, most commonly transportation (78%), grocery or other shopping (76%), and housework (72%). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• 57% of caregivers report that they do not have a choice about performing clinical tasks, and that this lack of choice is self-imposed.
• 43% feel that these tasks are their personal responsibility because no one else can do it or because insurance will not pay for a professional caregiver.
• 12% report that they are pressured to perform these tasks by the care receiver.
• 8% report that they are pressured to perform these tasks by another family member. [AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.]
• Caregivers report holding significant decision-making authority regarding the following:
• Monitoring of the care recipient’s condition and adjusting care (66%);
• Communicating with healthcare professionals on behalf of the care recipient (63%);
• Acting as an advocate for the care recipient with care providers, community services, or government agencies (50%). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Difference between caring for family vs not family
• Time spent care giving 
• 4 in 10 (40%) caregivers are in high-burden situations, 18% medium burden, and 41% low burden based on the Level of Care Index (1997). Burden of care increases with hours of care provided. 92% of providers providing 21 or more hours per week are high burden versus 16% of lower hour providers. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Primary family caregivers of people with dementia report spending an average of 9 hours per day providing help to their relatives. [Fisher, G. G., Franks, M. M., Plassman, B. L., Brown, S. L., Potter, G. G., Llewellyn, D., et al. (2011). Caring for Individuals with Dementia and Cognitive Impairment, not Dementia: Findings from the Aging, Demographics, and Memory Study.]
• Hours per week 
• Family caregivers spend an average of 24.4 hours per week providing care. Nearly 1 in 4 caregivers spends 41 hours or more per week providing care. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Family caregivers who reside with those they provide care for spend 40.5 hours per week caring for this person.
• Those caring for a spouse/partner spend 44.6 hours per week performing caregiving tasks.
• Those caring for a child under age 18 spend 29.7 hours per week performing caregiving tasks. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Older caregivers who are 75+ years old provide 34 hours in an average week on caregiving. Middle aged caregivers report spending 21.7 hours per week on caregiving tasks. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provide an estimated 21.9 hours of care per week. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
• The average duration of a caregiver’s role is 4 years.
• Only 30% of caregivers provide care for less than a year.
• 24% of caregivers provide care for more than 5 years.
• 15% of caregivers provide care for 10 or more years. Higher-hour caregivers are twice as likely to have been in their caregiving role for 10 years or more. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Race and Ethnicity 
• Individual adult caregivers in the U.S. identify their race/ethnicity as the following:
• White: 62%
• African-American: 13%
• Hispanic (non-White, non-African-American): 17%
• Asian-American: 6% [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Hispanic (non-White, non-African-American) caregivers have the highest reported prevalence of caregiving at 21%. Caregiver prevalence among other racial/ethnic groups are as follows:
• African-American: 20.3%
• Asian-American: 19.7%
• White: 16.9% [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• White caregivers are on average older (52.5 years old) than their counterparts among other races/ethnicities. The average age of caregivers among other racial/ethnic groups are as follows:
• Asian-American: 46.6 years old
• African-American: 44.2 years old
• Hispanic (non-White, non-African-American): 42.7 years old [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Hispanic (non-White, non-African-American) and African-American caregivers experience higher burdens from caregiving and spend more time caregiving on average than their White or Asian-American peers. The percentage of high burden caregivers caregiving time by racial/ethnic groups are as follows:
• African-American: 57%, 30 hours per week
• Hispanic (non-White, non-African-American): 45%, 30 hours per week
• White: 33%, 20 hours per week
• Asian-American: 30%, 16 hours per week [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
• More than half of African-American caregivers find themselves “sandwiched” between caring for an older person and a younger person under age 18, or caring for more than one older person. African-American caregivers are also more likely to reside with the care recipient and spend an average of 20.6 hours per week providing care. In addition, 66 percent of African-American caregivers are employed full or part-time. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• The needs of care recipients vary by race/ethnicity. African-American caregivers (41%) are more likely to provide help with more than three ADLs than white caregivers (28%) or Asian-Americans (23%). [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]
• A vast majority of caregivers (85%) care for a relative or other loved one:
• 42% care for a parent (31% for a mother, 11% for a father);
• 15% care for a friend, neighbor or another non-relative;
• 14 % care for a child;
• 7% care for a parent-in-law;
• 7% care for a grandparent or grandparent-in-law. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Elder Abuse 
• The Department of Health defines abuse as, “a violation of an individual’s human and civil rights by another person or persons.” Abuse can take many forms, including physical, psychological, sexual, or financial abuse, discrimination, or neglect.
• Under this definition, as many as 25% of elder care recipients report significant levels of abuse. [Cooper, C., Selwood, A., & Livingston, G. (2008). The Prevalence of Elder Abuse and Neglect: A Systematic Review.]
• Approximately 1 in 10 Americans aged 60+ have experienced some form of elder abuse. Some estimates range as high as 5 million elders who are abused each year. [National Council on Aging. (2016). Elder Abuse Facts.]
• Only 7% of elder abuse cases are ever reported to authorities. [National Research Council. (2003). Elder Mistreatment: Abuse, Neglect and Exploitation in an Aging America.]
• For every 1 case of elder abuse known to programs and agencies there are 24 unknown cases. [Lifespan of Greater Rochester, Inc., Weill Cornell Medical Center of Cornell University & New York City Department for the Aging. (2011). Under the Radar: New York State Elder Abuse Prevalence Study.]
• Elder abuse, even modest abuse, increases risk of death by 300% compared to elders who have not been abused. [Dong, X., Simon, M. A., Beck, T., Farran, C., McCann, J., Mendes de Leon, C., et al. (2011). Elder Abuse and Mortality: The Role of Psychological and Social Wellbeing.]
• The direct medical costs associated with violent injuries to older adults are estimated to add over $5.3 billion to the nation’s annual health expenditures, and the annual financial loss by victims of elder financial exploitation were estimated to be $2.9 billion in 2009, a 12% increase from 2008. [Administration on Aging: National Center on Elder Abuse. (2016). Statistics/Data: Impact of Elder Abuse].