Caregiving in the U.S National Caregiver Survey Gail Gibson Hunt National Alliance for Caregiving March 15, th Annual Conference for Caregiving Coalitions

National Alliance for Caregiving (NAC) Who We Are  Nonprofit coalition of 40+ national organizations focused on family caregiving issues  Established in 1996 to support family caregivers and the professionals who work with them  NAC Activities: Conduct research and policy analysis; Develop national programs; Strengthen state and local coalitions; Increase public awareness; Work internationally

Caregiving in the U.S. – 2009 Survey Purpose of Study: Present a portrait of family caregiving today and compare it to past portraits, building on 1997 and 2004 studies. Conducted by NAC in collaboration with AARP and funded by the MetLife Foundation. Methodology: Quantitative telephone interviews with 1,480 family caregivers age 18+, caring for people of any age. Over-sampling for African Americans, Hispanics, Asian Americans and people 50+.

Study Outline Continued Expanded Study: To include caregivers of children with special needs in addition to caregivers of adults 18+ Unique Questions This Year:  Technology and the use of the Internet for information  Which public policies to support caregivers would caregivers prefer?

Demographics of Caregiving 65.7 million caregivers make up 29% of the US adult population and 31% of households  3.9 million care for only child recipients  48.9 million care for only adult recipients  12.9 million care for both child and adult recipients Portrait of Caregiver: 48-year-old women who works and care Average of 20.4 hours of care per week for her mother for an average of 4.6 years 34% care for two or more people 86% provide care for a relative

Caregiving Details:  72% of caregivers take care of someone 50+  14% care for an adult 18 to 49  14% care for a child under 18.  Caregivers have been in their role for an average of 4.6 years, with 3 in 10 having given care for 5 years or more (31%);

Care Recipient Condition Top reasons stated by caregivers for recipients need for care: 12% old age 10% Alzheimer’s/confusion (plus follow-up = 32%) Other frequent mentions: 7% Cancer 7% mental/emotional illness 5% heart disease 5% stroke 76% have long-term physical conditions. 25% have emotional or mental health problems

Caregiving Activities  58% of caregivers help with at least one Activity of Daily Living (ADL). Most common: 40% - help with getting in and out of beds and chairs (up 7% since 2004) 32% - getting dressed 26% - bathing or showering 24% - getting to and from the toilet

Caregiving Activities for Children with Special Needs Caregivers of children with special needs help their care recipients with 5.6 out of nine Caregiving Support Activities (CSAs) on average: 85% - monitoring the child’s condition 84% - ensuring others know how to deal with the child 72% - advocating on his/her behalf 65% - performing treatments or therapies 64% - giving medicines or injections 63% - dealing with financial issues

Burden of Care Care Coordination Detail: 32% of caregivers experience a high burden of care 25% of caregivers find some difficulty in coordinating care However – 40% of caregivers of children with special needs find this coordination at least somewhat difficult

Getting Help with Caregiving  66% of caregivers say at least one other unpaid caregiver helps their care recipient, an increase from 2004, but the survey saw a decrease in the share who receive paid help;  Older caregivers are most likely to be sole unpaid caregivers (47% vs. 30% younger caregivers);  Still - Just over half of all caregivers say they provide all or most of the unpaid care (56%), similar to 2004

Health and Stress of Caregiving 17% of caregivers say their health is fair or poor compared with 13% of the general adult population. Reported health impacted by: Income Race/Ethnicity Number of years of caregiving Emotional Stress – 31% consider their caregiving situation stressful with women more likely than men to feel high stress.

Caregiving & Work

Need for Caregiving Information  78% of caregivers feel they need more help or information about caregiving topics (up 10% from 2004) and the need for information increased with the age of the recipient and the level of burden  Top Sources of information – 36% - health or caregiving provider 25% - internet (related to household income) 20% - family, friends, other caregivers 12% - aging or disease-specific organizations

Technology 45% of caregivers say they use some sort of technology: 24% - electronic organizer or calendar 12% - emergency response system 11% - device to send info to doctor or care manager 9% - electronic sensor to detect safety at home 7% - website or software to track personal records 3% - text reader for low vision

Caregiver Public Policy

Recommendations  Identify and help caregivers so that they can continue to provide care while maintaining their own well being;  Identify and advocate for programs that make a real difference to caregivers’ well being and their ability to continue providing care;  Identify and promote the use of technologies that can facilitate caregiving;  Extend the reach of caregiver programs to all caregivers regardless of the age of their recipient;  Encourage families to plan proactively for aging and potential health/disability issues;

For More Information: Gail Gibson Hunt President & CEO National Alliance for Caregiving National data on family caregiving: