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AARP Reaching Out November 2014 - Caregiving Special

Friday, November 21, 2014  
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AARP Reaching Out

Plan a 'Senior Sunday'
Do something for and with a senior in your family, community
by Jo Ann Jenkins, AARP CEO

We are a nation of givers - generously giving time, energy and resources to benefit individuals less fortunate.

joannjenkins1It's a great American tradition to take time to reflect on and give thanks for the blessings of health, freedom, personal and financial security, family and friends.

In November - the month of Thanksgiving - we also commemorate Veterans Day to show our gratitude to our veterans for their service. It's also National Caregivers Month, a time to appreciate and thank those who take care of family members, often allowing them to remain at home rather than live in an institution.

I'd like to make a suggestion to our AARP family. Perhaps, in the midst of our end-of-November shopping, we should insert a "Senior Sunday," when each of us commits to doing something for and with a senior, whether that person is in our family, community or elsewhere.

Why? Because social isolation is a killer. It's the trigger for a myriad of health problems, nagging loneliness and even, sadly, suicide. At AARP, we try to look at all the connections that make up a person's life and to come up with ways to help keep those connections strong, even in times of stress and crisis.

Some of the ways AARP helps you build and sustain human connection is through our Livable Communities program our digital literacy project and our Caregiving Resource Center.

I hope you will take time to learn about these programs and look at more service opportunities we champion (such as Mentor Up and Experience Corps and to dedicate yourself to participating where you can.

My best wishes to everyone in our extended AARP family and my sincere hope that as you give thanks for your blessings, you will take a moment to shine a light on someone else.

Read the entire article.

New Study Shows Added Stress Caregivers Face During the Holiday Season, With Nearly Half Citing Financial Concerns
New AARP and Ad Council PSAs highlight the changing roles of caregivers, offer tools and resources for support

In an effort to support the 42 million caregivers in the U.S. who are caring for parents and older loved ones and to illustrate the complexity of this relationship, AARP and the Ad Council are unveiling a new suite of public service advertisements (PSAs), including ads specifically designed to reach the Hispanic community, as an extension of their national Caregiver Assistance campaign. The PSAs, and new data highlighting the added stressors many caregivers face during the holiday, coincide with National Family Caregivers Month (November).

More than one in three Hispanic households includes a caregiver according to research conducted by Evercare and the National Alliance for Caregiving, and Hispanic caregivers report more intensive caregiving situations compared to the general population (63 percent compared to 51 percent). Qualitative research by AARP also shows that most Latinos don't identify themselves as caregivers. Instead, as Evercare data notes, caring for an older parent or relative is seen as an expected cultural responsibility. This may lead them to be less likely to seek out resources or extra support to help with the role.

According to AARP's research, the 42.1 million caregivers in the US provide an estimated $450 billion worth of unpaid care to aging relatives and friends. Many think that family caregivers are paid health professionals, providing full-time care to someone in need of daily help, when in reality, most caregivers are also working and managing their own families at the same time. This juggling of responsibilities can be highly stressful, putting caregivers at risk for depression, anxiety, immunosuppression, cardiovascular disease, and premature aging among other physiological consequences, as well as causing financial problems.

Watch the ads:

(Spoon: English)

(Bath: Spanish)

See all the PSAs, research and more at

Through the PSAs, caregivers are urged to tools and resources and to connect with experts and other caregivers in a supportive community.

AARP and the Ad Council commissioned the new nationwide online survey, conducted by Lightspeed Research, earlier this month among approximately 1,200 women ages 40 to 60. The survey also found:

  • The largest percentage of both General Market (53%) and Hispanic caregivers (45%) said that not having enough money was the biggest source of stress for them during the holiday season.
  • Other top holiday season concerns among general market and Hispanic audiences included trying to make the holidays meaningful (33%/27%), needing extra time to shop for gifts (30%/24%), and juggling work schedules with caregiving needs (27%/23%).
  • Both General Market (44%) and Hispanic (51%) caregivers thought that having their family together was one of the top three things they looked forward to most during the holidays.

To observe National Family Caregivers Month, AARP also has launched two new support tools on the Caregiver Resource Center, One gives caregivers the option to tell their caregiving story. The second lets caregivers search a nationwide directory of senior-care providers including consumer reviews and cost information.

Since the initial launch in the fall of 2012, the Caregiver Assistance campaign has received over $72.4 million in donated media received more than 15 million visits. Per the Ad Council model, the new PSAs will air and run in advertising time and space donated by the media.

"Juggling Work and Caregiving Now"
A Guide For Caregivers

JugglingWorkandCaregivingA staggering 42 million Americans face the challenges of caring for a loved one while working. Although caregiving can be a richly rewarding experience, the role comes with enormous responsibilities-and pressures. AARP's gentle guide provides practical resources and tips that are easy to find when needed, whether someone is caregiving day to day, planning for future needs or in the middle of a crisis. And equally important, this book helps care for the caregiver.. Author Amy Goyer, an expert in aging and families, provides insight, inspiration and her own poignant story as a live-in caregiver to her parents.

Amy provides expertise on a variety of family issues - from grand-parenting to family caregiving, parenting and other family relationships, and multigenerational living. Follow her on Twitter @amygoyer

Free Downloads are available on:


Heart-ing Family Caregivers Across the Country
New Campaign Aims To Spotlight Caregivers

Every day, a silent army of Americans performs a great labor of love: caring for aging parents, spouses, brothers, sisters, aunts, uncles, friends... so they can remain in their homes. We are on duty 24/7, and often we can't even take a break. But we wouldn't have it any other way. We are the unsung heroes. Here are our stories. We hope you will share yours.

Share Your Story

Help us fight for you and your loved ones: more support, help at home, workplace protections, training and more.

AARP Creates Model State Bill to Help Family Caregivers

Millions of Americans are caring for an aging parent, a spouse or another loved one, helping him or her to live independently at home. For many, family caregiving is more than help with household chores or providing transportation. It includes complex care responsibilities that were once provided only by medical professionals.

In fact,almost half of the 42 million familycaregivers in Americahave performed medical or nursing tasksfor their loved ones.These tasks include:

  • Managing multiple medications
  • Providing wound care
  • Managing special diets
  • Operating monitors or other specialized medical equipment.

By providing this care, family caregivers serve a critical role in helping to keep their loved ones from being readmitted to the hospital, out of costly institutions such as nursing homes, and safe at home. Most do so with no medical training.

Yes, being a family caregiver can be a big responsibility, but AARP has identified some common-sense steps that can be implemented by states and would make a world of difference to caregivers -and to the loved ones they help.

That's why AARP developed a model state bill, calledthe Caregiver Advise, Record, Enable (CARE) Act.The CARE Act supports family caregivers when their loved ones go into the hospital. It also helps caregivers learn what they must do to safely provide care for their loved ones when they're discharged home.

TheCARE Actfeatures three important parts:

  • The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The hospital or rehabilitation facility must provide an explanation and live instruction of the medical tasks -such as medication management, injections and wound care -that the family caregiver will perform at home.

AARP state officesare now working to pass the CARE Act, with Oklahoma and New Jersey becoming the first two states to pass the legislation.

Older Adults and People With Disabilities Want Choice and Control
by Enid Kassner

Enid Kassner directs the livable communities/long-term services and supports team at the AARP Public Policy Institute.She oversees research and policy development that focus on expanding consumer access and choice to an array of affordable long-term services and supportsoptions, with an emphasis on improving home- and community-based services, supporting family caregivers and making communities more livable.

We all like to have choices. Being able to decide where we live and work, what we eat and how we spend our leisure time all enhance life satisfaction.

Having a disability doesn't diminish the desire for choice. But unfortunately, people with disabilities often lose control over how services are provided when they depend on Medicaid for home- and community-based services (HCBS), such as meal preparation or help with bathing and dressing.

It doesn't have to be this way.

Participant-directed services give consumers greater control

A Medicaid demonstration project known as Cash and Counseling showed that programs can deliver services in a way that enhances individual choice and control. This approach had positive outcomes and led to broader adoption of participant-directed programs.

In these programs, consumers can hire and fire their own workers, schedule their hours and, in some cases, determine their rate of pay. Some programs allow consumers to manage their budgets (as determined by the program's needs assessment). This budget authority gives much greater flexibility to program participants. For example, using funds to purchase a washer and dryer might allow someone with limited mobility to do their own laundry, if they can't get to a laundromat.

Because consumer choice is so important, a major report issued this year by AARP, with support from The SCAN Foundation and The Commonwealth Fund (the LTSS Scorecard), includes access to participant-directed services as a measure for ranking state long-term services and supports systems. But how many people have these options, and how much choice do they have?

New data show few people with disabilities are able to direct their own services

Source: National Resource Center for Participant-Directed Services. 2013 National Inventory Survey on Participant Direction. September 2014.

A new report by the National Resource Center for Participant-Directed Services (NRCPDS) documents the current state of participant-directed programs. The report identifies 277 publicly administered programs in all 50 states and the District of Columbia. It shows modest growth in these programs, which serve over 838,000 individuals. But only a tiny percentage of low-income people with disabilities who receive public benefits have access to participant direction. The NRCPDS calculated that the national average is 6 percent; only six states serve greater than 10 percent of the target population in participant-directed programs.

Most programs responding to the survey allow consumers to hire relatives or neighbors to provide services, although nearly all prohibit the hiring of a spouse or parent. While most programs allow consumers to manage their budgets, nearly all place restrictions on what items can be purchased.

The report notes that participant-directed programs are popular: Two-thirds of those that responded to the NRCPDS survey have waiting lists. Public programs that deliver HCBS should work to expand participant-directed options so that all consumers who prefer this approach have access to it.

HCBS programs should measure quality and consumer satisfaction

Few programs in the NRCPDS survey reported measuring outcomes, such as health status or quality of life. All HCBS programs should do a better job of measuring and reporting on quality and consumer satisfaction. The bottom line: HCBS programs should enhance life satisfaction, provide high-quality services, and ensure that consumers have meaningful choices.

Raising Expectations 2014: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers

This report by AARP's Public Policy Institute, The Commonwealth Fund and The SCAN Foundation shows some states significantly out-perform others in the delivery of long-term services and supports (LTSS) to older adults and people with disabilities.

While states are making measureable progress in improving long term services and supports (LTSS) - which includes home care services, family caregiver supports, and residential services such as nursing homes - widespread disparities still exist across the country, with even top performing states requiring improvement. Further, the pace of change remains slow, threatening states' ability to meet the needs of the aging population.

The LTSS Scorecard evaluates performance in five key dimensions: (1) affordability and access, (2) choice of setting and provider, (3) quality of life and quality of care, (4) support for family caregivers, and (5) effective transitions. New indicators this year include length of stay in nursing homes and use of anti-psychotic drugs by nursing homes, raising serious concerns about the quality of institutionalized care.

The report is available, where it may be downloaded as a pdf or viewed dynamically. State-specific data is also available on demand at


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