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Family Caregiving in an Aging America: A National Perspective 3 rd National Conference for Caregiving Coalitions March 18,2009 Lynn Friss Feinberg, MSW National Center on Caregiving Family Caregiver Alliance www.caregiver.org

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Caregivers are At-Risk A 25-year body of research shows family caregivers to be a vulnerable and at-risk population that the health and LTC system neglects Health risks Financial burdens Emotional strain Mental health problems Workplace issues Retirement insecurity

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A health problem facing a loved one may be contained in the body of that one person, but it affects the entire familys soul. -- Former Vice President Al Gore Family Re-Union Conference June 26, 1998

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Caregiving Is at a Tipping Point Discharging sicker and quicker Increasing stress from dealing with an inefficient health care system and lack of care coordination Little communication among physicians and lack of contact with the family about treatment and care options Managing difficult medication schedules and using sophisticated technology in the home Oxygen equipment, catheters, intravenous medications

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Navigating an increasingly fragmented and confusing service delivery system Locating and accessing quality paid help Dealing with information overload and choices Juggling competing demands of work and caregiving More long-distance caregiving Caregiving Is at a Tipping Point

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The Big Disconnect Lack of understanding of the complexity of caregiving today, and the human toll on those receiving AND giving care.until it happens to you Huge denial Scary Ideological barriers

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Families Are Deeply Worried For many American families in the throws of caregiving for a frail older adult, there is deep worry about quality of care and quality of life. Families dont know who to call, or where to go, to get the right kind of help, at the right time, and help they can afford Deep frustration and a sense of hopelessness about our broken health care and LTC system when you are going through it

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Caregivers Express Less Confidence in Future Ability to Obtain High-Quality Care Percent of adults ages 19-64 who are not too confident or not at all confident they will be able to obtain high quality care when needed in the future Caring for sick or disabled family member Not Caring for sick or disabled family member 60 40 20 0 TotalWomenMen 43* 27 45* 30 38 24 * Significant difference at p