Family Caregiving and Financial Compensation Maria Claver, PhD, MSW Melanie Horn Mallers, PhD Department of Family & Consumer Sciences Gerontology Program

Caregivers Informal: Family members, as well as friends, partners, and neighbors who provide care to aging loved ones. Informal: Family members, as well as friends, partners, and neighbors who provide care to aging loved ones. Formal : paid nurse aids, personal assistants, and home care staff who provide hands-on care in both home and long term settings. Formal : paid nurse aids, personal assistants, and home care staff who provide hands-on care in both home and long term settings.

Family Caregiving Population Family caregiving has become the norm! Family caregiving has become the norm! In the U.S- more than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year. In the U.S- more than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year. In CA- over four million family caregivers alone. In CA- over four million family caregivers alone. Caregivers care for spouses (5%), and parents (40%) as well as grandparents, parents-in-law, other relatives, and friends (55%). Caregivers care for spouses (5%), and parents (40%) as well as grandparents, parents-in-law, other relatives, and friends (55%).

Family Caregiving: Availability and Challenges Availability of care is a major factor in predicting whether or not an older person can remain at home (aging in place) versus being moved to institutionalized care Availability of care is a major factor in predicting whether or not an older person can remain at home (aging in place) versus being moved to institutionalized care While the need for care by older adults is increasing, availability is decreasing. While the need for care by older adults is increasing, availability is decreasing.

Family Caregiving: Availability and Challenges Family caregivers are essential given that over 40% of U.S. primary care physicians think they don't have enough time to spend with patients Family caregivers are essential given that over 40% of U.S. primary care physicians think they don't have enough time to spend with patients Family caregivers provide the overwhelming majority of long term-care services in the U.S. Family caregivers provide the overwhelming majority of long term-care services in the U.S. The majority of adults living in the community and in need of long-term care depend on family and friends as their only source of help. The majority of adults living in the community and in need of long-term care depend on family and friends as their only source of help. FAMILY CAREGIVERS MATTER!

Economics of Family Caregiving Family caregivers represent 80% of all home care services and are conservatively valued at $306 billion a year, more than twice the amount spent on paid home care and nursing home services combined. Family caregivers represent 80% of all home care services and are conservatively valued at $306 billion a year, more than twice the amount spent on paid home care and nursing home services combined. They are 2.5 times more likely than non- caregivers to live in poverty. They are 2.5 times more likely than non- caregivers to live in poverty. They are five times more likely to receive Supplemental Security Income (SSI). They are five times more likely to receive Supplemental Security Income (SSI). Caregiving families have median incomes that are more than 15% lower than non-caregiving families. Caregiving families have median incomes that are more than 15% lower than non-caregiving families.

Economics of Family Caregiving Caregivers comprise 13% of the workforce, but often lose wages and time from work due to caregiving and related role demands. Caregivers comprise 13% of the workforce, but often lose wages and time from work due to caregiving and related role demands. 59% of family caregivers who care for someone over the age of 18 either work or have worked while providing care 59% of family caregivers who care for someone over the age of 18 either work or have worked while providing care 62% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely. 62% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely. 10% of employed family caregivers go from full-time to part-time jobs because of their caregiving responsibilities. 10% of employed family caregivers go from full-time to part-time jobs because of their caregiving responsibilities. Overall, American businesses can lose as much as $34 billion each year due to employees' need to care for loved ones 50 years of age and older. Overall, American businesses can lose as much as $34 billion each year due to employees' need to care for loved ones 50 years of age and older.

Impact of Family Caregiving 1/3 experience stress, burnout and exhaustion, possibly resulting in depression. 1/3 experience stress, burnout and exhaustion, possibly resulting in depression. Family caregivers report having a chronic condition at more than twice the rate of non- caregivers. Family caregivers report having a chronic condition at more than twice the rate of non- caregivers. Elderly spousal caregivers with a history of chronic illness themselves have a 63% higher mortality rate than their non-caregiving peers. Elderly spousal caregivers with a history of chronic illness themselves have a 63% higher mortality rate than their non-caregiving peers.

Impact of Family Caregiving: Summmary of Sources Financial Direct costs of care such as equipment and medicine Direct costs of care such as equipment and medicine Travel costs of long distance caregivers Travel costs of long distance caregivers Reduced hours and income from work Reduced hours and income from work Early retirement Early retirement Disruptions at work Disruptions at work Reduced productivity at work Reduced productivity at work Missed opportunities in career Missed opportunities in career

Impact of Family Caregiving: Summmary of Sources Physical Health problems (headaches, stomach problems, sleep and weight disturbances) Health problems (headaches, stomach problems, sleep and weight disturbances) Increased use of drugs and health services Increased use of drugs and health services Exhaustion and low stamina Exhaustion and low stamina Self neglect Self neglect Increased morbidity and mortality Increased morbidity and mortality

Impact of Family Caregiving: Summmary of Sources Emotional Grief, loss and hopelessness Grief, loss and hopelessness Guilt, anger and resentment Guilt, anger and resentment Giving up time for self, family Giving up time for self, family Strained social and family relationships Strained social and family relationships Social isolation Social isolation Worry and anxiety Worry and anxiety Depression Depression

Should Family Members Provide Care? Should they be Financially Compensated? PROS It will expand capacity and supply of workers It will expand capacity and supply of workers It will increase gender and family equity It will increase gender and family equity It will increase elder’s satisfaction as a consumer It will increase elder’s satisfaction as a consumer It will decrease administrative and bureaucratic barriers It will decrease administrative and bureaucratic barriers

Should Family Members Provide Care? Should they be Financially Compensated? CONS It will increase family exploitation It will increase family exploitation It will cause caregiver stress and strain It will cause caregiver stress and strain It will lead to elder abuse and fraud It will lead to elder abuse and fraud It will incur increased costs It will incur increased costs