Many Faces of Caregiving Study made possible by MassMutual Financial Group 2014 Christine Carroll CHANGING THE CONVERSATION ABOUT CAREGIVING - EASTERSEALS.COM
Easter Seals and Caregiving Easter Seals is changing the national conversation about caregiving by raising awareness and interest around an experience that has become the new normal for 66 million Americans of all ages. Many people don t selfidentify as caregivers, but they are or will be one day. Easter Seals provides supports and counsel to caregivers letting them know they aren t alone in what can be a challenging yet rewarding experience. Because Americans are living longer today, the face of caregiving is changing. More of us are taking on this enormous responsibility of caregiving at much younger ages - often while still needing to work, care for other family members and ourselves. Whether you re a young newlywed taking care of your husband who was injured in war, a son or daughter taking care of your aging or ailing parents, a sibling helping your brother or sister with Down syndrome, or a parent taking care of a child with autism or other disabilities, Easter Seals has and will continue to be there by your side. There are only four kinds of people in the world: Those who have been a caregiver; those who currently are caregivers; those who will be caregivers and those who will need a caregiver. Easter Seals is committed to a holistic approach to the caregiving experience, providing valuable services and supports, offering rewarding education/training opportunities, playing a leadership role in the public policy arena at the national, state, and local level, as well as contributing to the research agenda. Thanks to the generosity of MassMutual Financial Group and their more than 14-year commitment to Easter Seals and the families we serve, we ve set out to discover a little more about the broad spectrum of today s caregivers through the Easter Seals Many Faces of Caregiving Study. - First Lady Rosalynn Carter
Key Findings & Takeaways Younger Than You May Think One-third of Millennial and GenX respondents identify themselves as caregivers many individuals between the ages of 25 and 45 are already serving in this role. - More than half of Millennial (67%) and GenX (55%) caregiver respondents report providing care on a daily basis. One million new caregivers are now providing care for post-9/11 veterans; many with 50+ years of caregiving ahead of them.* Millennial caregivers are 18% more likely to ask for help than their GenX counterparts. Overall, the percentage of younger caregivers in the Many Faces of Caregiving Study by Easter Seals reinforces data from other studies including the Caregiver Action Network (CAN)** survey showing 36% of consumers ages 18-29 are currently serving as caregivers. We re Not Ready[to Care] The Many Faces of Caregiving Study shows the general public is not prepared to either be a caregiver or to need care. 70% of respondents admit to having concerns about taking on a caregiving role 71% of respondents have not yet had the critical conversation with their families and loved ones about the future as it relates to their medical planning, although 15% are planning to 73% have not yet talked to their loved ones about the future as it relates to financial planning and retirement, although 12% are planning to 37% of respondents admitted to being not quite ready or not ready for handling a projected caregiving role (men 33% and women 42%) There is clearly a need to increase efforts to help people understand and plan for caregiving and to support those who are caregivers. The need for additional preparation is not only for those yet to embark upon their caregiving journey. Only 47% of caregivers surveyed are very satisfied with the care they are currently providing to their loved ones. Perception vs. Realities of Caregiving We often think of caregivers as women, but the Many Faces of Caregiving Study showed us that just as many men (34%) as women are stepping up to the plate to provide care. What s different is the roles and tasks performed. While there is a misconception that most caregivers provide care due to physical conditions, such as preparing a home for wheelchair access, the reality is 77% of caregivers provide care for emotional and mental health conditions, memory problems or dementia. - Caregivers may need further education about signs to watch for that someone is in emotional pain and might need help: personality change, agitation, withdrawal, poor self-care, and hopelessness. Learn more about the Simone Family and their story at easterseals.com.
Challenges Yield Rewards Caregivers identify the top three ways their lives are negatively impacted by the act of caring for a loved one: 1. Less time for self 2. Increased anxiety/stress and poor sleep 3. Financial impact Respondents also reported less time with friends, less time to exercise, and less time with children/family Even when given the opportunity, 13% of respondents weren t able to identify a negative consequence of caregiving Gender Differences Male respondents reported to be smoking more than female respondents and are more likely to only provide financial support in their caregiving role For women, anxiety/stress is much higher at 17% than male respondents Women also reported having less time for myself and admitted to unhealthy eating - both with a 10% differential compared to men It s important to note, most respondents identified their top three positive and beneficial outcomes from their caregiving experiences, particularly: 1. Developing closer relationships 2. Having a good sense of self 3. Enjoying time spent with those for whom they re providing care Investing in Care 85% of caregivers provide care at least several times a week, 59% of which provide care at least daily. 59% of respondents have been providing care for less than three years so they are fairly new to the caregiving role, however, depending upon circumstances may be in this role for the duration of their life. Worth Planning For 60% of all respondents cited financial planning as a helpful tool as they planned for the future. Here s a couple of things to keep in mind: - It s never too early to start making financial plans for the future. - Conversations about finances may be challenging, but if done with compassion might open up a new level of your relationship. - If your loved one is not receptive to financial assistance, you may consider hiring a professional to provide support and guidance sometimes finances are easier to discuss with non-family members.
Easter Seals Advocates for Caregivers Easter Seals has been an instrumental voice in helping create federal programs that increase access to respite and transportation, two areas caregivers often identify as their primary needs. Easter Seals knows that educating the public about care needs and planning will not be effective if there is not a system of supports available when people need them. Financing and availability of long-term services and supports (LTSS) such as in-home care, respite, adult day services, personal attendants, assistive technology and more remains a barrier for many people. In order to access these services, the only options right now are to impoverish yourself to qualify for Medicaid, purchase long-term care insurance that many can t afford or for which they do not qualify or pay directly out-of-pocket which most people cannot sustain and may led to enrollment in Medicaid once resources are depleted. Our country s LTSS system is also not integrated with our acute care system. Until very recently, there hasn t been an incentive to provide networks of LTSS providers to coordinate services. It may be difficult for consumers to find the options available in their communities and learn how to coordinate the need for services like physical therapy and other medical care. As our Medicaid and broader healthcare system are evolving, there is a need to support the development of comprehensive networks of LTSS service providers and to develop solutions, which integrate acute care through these networks. In addition, those programs that do exist to help caregivers need to be responsive to a variety of relationships that caregivers have with the people for whom they care. Right now there is not consistency among public programs about who qualifies as a caregiver and definitions vary in their inclusiveness of different kinds of family and other relationships. Where to Go for Help More than half (52%) of Many Faces of Caregiving Study respondents indicated it would be helpful to understand more about the resources available to them. Easterseals.com has caregiving information designed to support caregivers throughout the lifespan regardless of the stage at which you are providing care, with tips on how to better plan for the future. Our partner, MassMutual Financial Group, offers resources and approaches to financial planning for all stages of caregiving. Visit massmutual.com to learn more. Methodology Impulse Research conducted an online survey with a random sample of 1043 Millennials, men and women ages 25-49 in January 2015. The overall sampling error rate for this survey is +/-3% at the 95% level of confidence. Additional Resources Caring for Military Families: The Elizabeth Dole Foundation (www.elizabethdolefoundation.org) * RAND Study (www.rand.org/military-caregivers) * * CAN Study (www.caregiveraction.org/statistics/)