Home Alone Revisited Study Offers Closer Look at Special Issues that 20 million Family Caregivers Face
When AARP’s Public Policy Institute (PPI) conducted its Home Alone study in 2012, the outcome was the first national look at the evolving experience of family caregivers—who are being asked to perform more complex medical/nursing tasks than ever before, who experience a high degree of stress in their role, and who historically have not even been considered part of the health care team. Complex tasks run the gamut from administering many medications, including injections, to changing dressings and handling medical equipment. This is essentially “skilled nursing care”—the skills I chose to learn to do as a nursing student. It is also what I taught family members, neighbors and friends when I was a visiting nurse. This 2012 study was an exploration of how many caregivers are performing these tasks, how they learn to do them and how they are reacting to these responsibilities. We learned much.
The creation of the National Family Caregiver Support Program (NFCSP) nearly two decades ago marked the first federal recognition of the central role families play in the provision of long-term services and supports (LTSS). In the field of aging and caregiving, the NFCSP, created in 2000 under the Older Americans Act (originally enacted in 1965), was a game changer. Why? Because the federal program made it possible for every state to address family-related matters that historically were thought to be too private for a public response.
AARP continued its mission to empower all people 50 and over by being a sponsor at all four major diversity and inclusion journalist conferences: the National Association of Black Journalists, the Asian American Journalists Association, the National Association of Hispanic Journalists, and the National Lesbian and Gay Journalists Association. AARP hosted booths, workshops, and panel discussions on topics ranging from health and caregiving to the Midterm Elections and what it means to be ‘gay and graying’ in America. AARP’s goal at each conference was to support and cultivate relationships with multicultural media professionals, educate them about AARP’s various programs and services designed for diverse audiences, and offer them story ideas, expert sources, and resources on the issues that matter most to their target audiences.
Caroline, madre de dos y maestra de preescolar, se convirtió inesperadamente en cuidadora familiar de su padre después de que este sufrió un derrame cerebral grave. Su padre, Tom, ya fallecido, perdió el uso del lado derecho de su cuerpo y su capacidad de hablar. Tras múltiples cirugías y tratamientos de rehabilitación, pudo vivir en su hogar con la ayuda de enfermeras. Pero Caroline era quien le proveía los cuidados diarios, como supervisar las citas médicas y encargarse de ciertas responsabilidades de enfermería, como administrar sus medicamentos. "Me convertí en la persona en la que mi padre podía confiar más que nadie en el mundo", comentó Caroline. "Llegué a ser su lugar seguro y su mejor amiga". En comunidades de todo Estados Unidos, los cuidadores familiares como Caroline atienden a sus padres, cónyuges y otros seres queridos, ayudándolos para que puedan permanecer en sus hogares, donde quieren estar. Sus tareas no son fáciles, pero las realizan por amor y compromiso. Es por eso que AARP está luchando por los derechos de los cuidadores familiares, y de sus seres queridos, en todos los estados. En el 2018, AARP impulsó políticas nuevas para conseguir más ayuda en el hogar, flexibilidad en el lugar de empleo, capacitación, alivio y más, lo que beneficiará a más de 30 millones de cuidadores familiares. Estos son algunos de los puntos destacados:
In an election year filled with partisanship and political fights, it’s no surprise that many Americans feel that their voices aren’t being heard or that the issues that affect their lives aren’t being addressed. But, many outstanding elected officials work hard every day to make a positive difference for their constituents. That’s why AARP recognizes state legislators, governors, and other elected officials – from both sides of the aisle – who have stepped up and worked together to write, support, and advance common-sense policies that help older Americans remain in their homes and communities and retire with confidence. AARP is proud to announce our fifth annual bipartisan class of Capitol Caregivers, who fought this year to increase support for family caregivers and their loved ones, along with our fourth annual bipartisan class of Super Savers, who championed policies that enhance retirement security.
Caroline is a mother of two children and a preschool teacher who unexpectedly became a family caregiver for her father after he suffered a major stroke. Her father, Tom, now deceased, lost the use of his right side and his ability to speak. Multiple surgeries and rehabilitation treatments later, he was able to live at home with the help of nurses. But it was up to Caroline to provide daily care, such as overseeing appointments and handling certain nursing responsibilities, like managing his medications. “I became the person my father could rely on more than anyone in the world,” Caroline said. “I became his safe place and his best friend.” In communities across the country, family caregivers like Caroline are caring for older parents, spouses and other loved ones, helping them to remain at home – where they want to be. Their tasks are done out of love and commitment, but are not easy. That’s why AARP is fighting for family caregivers and their loved ones in every state. In 2018, AARP advanced new policies to provide more help at home, flexibility at work, training, relief and more, which will benefit over 30 million family caregivers. Here are a couple highlights:
As a family caregiver for my mother who died last year at the age of 96, I benefited greatly from the peace of mind and financial security of having paid family leave benefits from my employer, AARP. The benefit was there when I needed it most: to be present for significant caregiving issues, during a hospitalization, and, finally, in the last days of my mother’s life.
AARP led a group of 75 organizations yesterday, calling on Secretary of Health and Human Services (HHS) Alex Azar to implement the bipartisan Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act. In a RAISE Family Caregivers Act HHS Implementation Group Letter June 2018 Final , the organizations write, “Millions of individuals count on family caregivers every day. Family caregivers are counting on implementation of this commonsense law.” The RAISE Family Caregivers Act, which passed Congress with overwhelming support and was signed into law by President Trump on January 22, requires the Secretary of HHS to develop a strategy to support family caregivers within 18 months of the law’s enactment – the clock started ticking five months ago. According to the new law, the Secretary must:
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