Moving Dementia Caregiver Support Services into the Mainstream

Moving Dementia Caregiver Support Services into the Mainstream

Many of you, like me, know that family caregiving for someone you love can be a source of deep satisfaction and meaning.  But caring for a person with dementia, known as dementia caregivers, can exact an especially high emotional, physical and financial toll on family members themselves.

Dementia caregivers commonly experience more emotional upset, distress, isolation, and financial burdens than those caring for people with other illnesses who do not have dementia because daily care needs are progressive, complex, and frequently unpredictable.

More people are living at home with dementia and relying on their family to care for them

Addressing the needs of dementia caregivers is important because of the growing number of older people living at home with dementia who rely primarily on their families for help with basic tasks of daily living.  According to a report from the Centers for Disease Control and Prevention (CDC), the proportion of people with dementia dying at home increased significantly between 1999 and 2014, from 13.9 percent in 1999 to 24.9 percent in 2014, underscoring the increasing numbers of people with dementia residing outside of a nursing home setting.  This means that more people than ever are caring at home for someone living with dementia often without adequate and affordable support services, exacerbating the stresses all the more.

Part of that stress is the cost to families.

A recent study on the lifetime cost of dementia shows that families incur 70 percent of the total cost of care ($225,140 in 2015 dollars) for a person living with dementia. Medicare ($52,540) and Medicaid ($44,090) accounted for 30 percent of the total cost.

Taking care of dementia caregivers

Targeted care strategies, such as education, skills training, and counseling, can make a real difference in the daily lives of people with dementia and their family caregivers.  It is especially important, for example, to have someone to talk to when help is needed to address the behavioral and psychological symptoms of dementia. Successful programs for dementia caregivers begin with the health or social service provider talking with the family caregiver about his or her unique needs, problems, strengths, and resources, in what is known as a caregiver assessment.

Although evidence-based programs hold promise to create more value in the lives of dementia caregivers, these proven services are still not commonplace in communities and available to the families who could benefit from them.

A new AARP Public Policy Institute paper highlights examples of successful dementia caregiver programs and services. The report also identifies several barriers to scaling up evidence-based programs, including health care and social service providers’ lack of knowledge about successful caregiver services, and limited technical assistance to help providers understand how to identify family caregivers who might benefit from such programs and services.  Barriers also include a lack of integration of caregiver supports in existing systems of health care and long-term services and supports, and a lack of sufficient funding and payment mechanisms to adopt proven caregiver support services in practice settings.

The forthcoming National Research Summit on Dementia Care aims to shine a light on the need to accelerate the scaling up of evidence-based services for individuals living with dementia and their family caregivers.  Advancing these programs to reach families who need them should be a priority at the federal, state and local levels.


Lynn Friss Feinberg is a senior strategic policy adviser for the AARP Public Policy Institute.  She has conducted policy analysis and applied research on family caregiving and long-term services and supports for more than 30 years.




Source link

Coming June 14: All-New State Scorecard on Long-Term Services & Supports

Coming June 14: All-New State Scorecard on Long-Term Services & Supports

This is an exciting month for AARP’s Public Policy Institute. We’re set to release our third Long-Term Services and Supports (LTSS) State Scorecard Report on June 14, and this powerful tool is far more interactive and comprehensive than the 2011 and 2014 installments.

A lot has changed since 2011 when we first partnered with the Commonwealth Fund and the SCAN Foundation to conceive of the idea for a scorecard that would measure long-term services and supports for older adults as well as people with physical disabilities and family caregivers on a state-by-state basis.

At the time, I concluded in an article that, based on the report’s findings, even the best performing states had a long way to go to create a high-performing system of long-term services and supports. Certainly many states have made progress since then, and no doubt the 2017 Scorecard will continue to highlight that progress. But there’s also little doubt that the Scorecard will uncover a list of shortcomings and areas for improvement. That’s what the Scorecard was all about in its 2011 and 2014 iterations, and that’s what the 2017 Scorecard promises to illuminate.

Of course, the actual Scorecard release is not the most exciting part. What’s truly exciting is the impact it can have after its release. We’re encouraged by how policymakers and advocates viewed the 2014 Scorecard for what it was: a call to action. Many used the information in the report as a tool to make positive change in their states. With Americans living longer and LTSS demand continually growing, our call to action must be louder and more pronounced than ever.

Thanks to the efforts of all involved in compiling and organizing data for the 2017 Scorecard, I’m proud to say that—no question—it tops the 2014 installment in value as a key tool in the field. So, what’s the same and what’s different this time around? Like the first two installments, the 2017 Scorecard examines state performance across five key categories, or dimensions:

  • Affordability and access
  • Choice of setting and provider
  • Quality of life and quality of care
  • Support for family caregivers
  • Effective transitions

But this year, we’ve placed an emphasis more than ever on how the results are presented. The information on our website will be truly interactive and engaging than in years past. (The new version of the site,, will appear June 14.)   Users can easily customize data to suit their needs, no matter what role they play in LTSS and where they’re located. While our accompanying report remains an invaluable source of information, the interactive website has become the true centerpiece of the offering.

Other new additions of which we’re extremely proud: Visitors to the site will have access to videos, called Impact Stories, that show how improving on the Scorecard can impact the lives of real people. Users can also download Promising Practices such as this one as well as Emerging Innovations that states can use as they work to improve the lives of older adults, those with physical disabilities, and family caregivers. Better still, new and groundbreaking content will not stop with the June 14 Scorecard release. We’ll continue to bring you more Promising Practices and Emerging Innovations, as well as releases in our Impact Story video series, throughout the year.

My colleague Jean Accius, vice president for Independent Living/Long-term Services and Supports, who was instrumental in spearheading these changes, summed up their value succinctly when he said, “These concrete tools and innovative practices will help states improve their performance and, ultimately, the lives and well-being of others.” As for the addition of the Impact Story videos this year, he added that they “literally complete the picture—putting a face to the diversity of individuals whom the Scorecard examines.”

Will this year’s Scorecard illuminate shortcomings and challenges in LTSS as it has in the past? Absolutely. (Here’s a teaser: we’ve got a long way to go.) But I’m extremely excited that we’ll also shine a light on a path forward for all caregiving stakeholders.

Susan Reinhard is a senior vice president at AARP, directing its Public Policy Institute, the focal point for AARP’s public policy research and analysis. She also serves as the chief strategist for the Center to Champion Nursing in America, a resource center to ensure the nation has the nurses it needs.


Source link

Five Reasons Our Video Series Can Support Family Caregivers — and the Nurses Who Work With Them

Five Reasons Our Video Series Can Support Family Caregivers — and the Nurses Who Work With Them

Since AARP started partnering with the Department of Veterans Affairs beginning last year to produce a series of 10 videos (five in English, five in Spanish) through the Home Alone Alliance, which I first wrote about here, we’ve only gotten more excited about the project.

The goal of the videos is to bridge the gap between what family caregivers are expected to do and the information and know-how actually bestowed on them. Just as importantly, nurses can take advantage of the videos as a resource, as another tool to inform them of how caregivers will most efficiently learn a task.

Chances are, if you’re caring for a person at home, sooner or later you might need them. As my colleague Rita Choula, a senior adviser at AARP, points out, the topics weren’t chosen randomly. The AARP Public Policy Institute col0laborated with the United Hospital Fund to conduct multiple discussion groups with family caregivers. The findings, published in a September 2016 report, showed that little information was available that reflected situations family caregivers are likely to find themselves in.

“There aren’t a ton of videos that show how to do medical nursing tasks,” says Choula. “Many of those that exist are done in a sterile hospital with nurses working on dummies in a hospital bed. They don’t reflect a family caregiver’s reality.”

Meeting a Need

We ensure a strong product in the instructional videos through collaboration. We partner with numerous organizations such as the Betty Irene Moore School of Nursing at the University of California – Davis, the Family Caregiver Alliance and the United Hospital Fund, all of whom provide different areas of expertise. With our production team hard at work on a new series focused on wound care (covering topics such as dealing with newly sutured wounds, bedsores, cellulitis and diabetic foot care), I want to share five reasons we’re so excited about our growing video offerings — and what sets them apart.

  1. Family caregivers are featured in the videos. Most videos take place in a realistic home setting, and viewers can identify with the family caregivers on screen, gaining confidence in their abilities to perform challenging tasks. Segments show health care professionals actively working with the family caregiver in training how to perform the tasks.


  1. They reflect a variety of cultures. The videos we’ve produced so far intentionally reflect multicultural communities. And as for language, at least two of the videos in each series, for example, are available in Spanish. We will continue that trend, adding other languages as well (e.g., Cantonese, Mandarin, etc.).


  1. They’re accessible. Videos are as little as two minutes long, so busy caregivers can find time to view one or more, pausing and rewinding as many times as necessary. We’ve also taken into account that people learn in different ways, so in collaboration with the United Hospital Fund, we’re developing resource guides for each video topic that caregivers can reference online or print out.


  1. Nurses can use them as a teaching tool. We’ve met with leading nursing groups about how they can use these videos. In fact, this area may present the greatest opportunity for impact because it reaches those who work directly with the caregiver. We want the videos to serve as a model for replicating the environment in which family caregivers perform these tasks. The videos, in fact, can inform nurses of how caregivers best learn to do a given task. And, of course, they can recommend the videos to caregivers, allowing them to refer to the tools time and again.

  2. There’s no shortage of topics to cover. We plan to produce at least one more series in 2017, likely an expansion of our medical management videos — but they will address some additional topics, such as caregiver questions for a pharmacist when filling a prescription. There’s no shortage of issues to cover when it comes to giving caregivers the information they need, from nutrition and the use of specialized equipment such as nebulizers to feeding tubes and oxygen tanks. We look forward to providing this information in a way that resonates with family caregivers.

More Coming Soon

We’re expecting to release the wound care videos this summer. Meantime, you can view videos from the mobility series at

Susan Reinhard is a senior vice president at AARP, directing its Public Policy Institute, the focal point for AARP’s public policy research and analysis. She also serves as the chief strategist for the Center to Champion Nursing in America, a resource center to ensure the nation has the nurses it needs.



Source link

AARP Volunteers Are Fighting For You

AARP Volunteers Are Fighting For You

During National Volunteer Week I’d like to stop and say thank you. Thank you to the thousands of AARP volunteers who are fighting for families as part of our multi-state advocacy campaigns across every state, D.C., Puerto Rico, and the U.S. Virgin Islands.  By giving your time and energy to advocate for the 50-plus and their families, you’ve helped to:

Here are snapshots of just a few of our incredible volunteers.

Pat from Connecticut
Pat helped AARP Connecticut champion the CARE Act, a new law that supports family caregivers when their loved ones go into the hospital and as they transition home. Recently she had a caregiver thank her for her work. Pat shared,

“She (the caregiver) said, would you go back to AARP and all the volunteers there and tell them thank you. Thank you for standing up for the seniors. Thank you for standing up for the people of Connecticut.” Pat continues, “And then I realized that’s why I volunteer.”

Pat from CT

Earl G. from Ohio

“I believe that AARP performs an essential service for members and all Ohioans to make sure they receive a fair shake on the issues we support and I am happy to volunteer my time for this important work.”

Earl represents AARP and the interests of Ohioans 50-plus in his service on the Public Utilities Commission of Ohio (PUCO) Telecommunication Study. He’s working to make sure Ohioans only pay what’s fair and justified for reliable utility service.

Monica S. from Florida

“The needs of caregivers vastly outweigh the resources we have today.   We are seeing the tip of the iceberg of the caregiver crisis.   I am a proud AARP volunteer addressing this issue.”

When it comes to supporting family caregivers, Monica’s doing it all. She advocates for more support for family caregivers and their loved ones at the state capitol, organizes conferences, recruits for events, is helping to build a caregiving coalition and much more.

Julia from Texas
Julia is fighting for more support for family caregivers—a subject near and dear to her heart being a caregiver herself.

“I am so glad that AARP for this legislative session is trying to work in this area especially to give caregivers some measure of support.”

(function(d, s, id) { var js, fjs = d.getElementsByTagName(s)[0]; if (d.getElementById(id)) return; js = d.createElement(s); = id; js.src = “”; fjs.parentNode.insertBefore(js, fjs);}(document, ‘script’, ‘facebook-jssdk’));

Julia the caregiver

"When you're married and your significant other gets ill, you truly experience what it means to be a caregiver," says Julia of San Antonio.

Posted by AARP Texas on Monday, April 10, 2017


Mike and Marilyn Worner with Sen. Nichol Poolman

Michael and Marilyn W. from North Dakota

During the 2017 legislative session Michael and Marilyn have enthusiastically worked to support family caregivers.  One bill they helped pass was recently signed into law and will help family caregivers get some of the relief and resources they need.

Even more impressive, Mike and Marilyn live 200 miles away from the state capitol. Yet, they have made multiple trips to Bismarck to help fight for family caregivers.



Thank you to Mike, Marilyn, Earl, Monica, Julia, Pat and ALL our amazing AARP volunteers who devote so much of their time and energy to help others.

Would you like to volunteer with AARP? Visit


Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.

Source link

Breaking Stereotypes: Male Family Caregivers

Breaking Stereotypes: Male Family Caregivers

Photo courtesy of iStock

Being a family caregiver—that is, providing unpaid care to a parent, spouse, friend or other adult loved one—is hard work. It can also be rewarding work. The struggles, frustrations and stress associated with this caregiving journey cross gender lines. While the “typical” family caregiver is a 49-year-old woman who takes care of a relative, 4 out of 10 caregivers are men.[i]

Men, often due to societal perceptions, have been less likely to talk about the emotional and economic challenges of caregiving. For example, a male family caregiver in a recent focus group summed it up well: “My dad taught me that men don’t cry. I don’t want to be crying on somebody’s shoulder.” From the playgrounds to the basketball court, from television images to song lyrics, the stereotypical drumbeat of manhood is reinforced:  Man-up. Be strong. Men are not supposed to cry. Do these sentiments—sometimes spoken, sometimes implied—sound familiar?

Such beliefs can have a lasting impact on the individual who must decide whether to conform to or combat these societal perceptions. They also have implications for industries and workers like health professionals and other service providers, who may not understand the multidimensional role men are playing in what society typically views as predominantly a woman’s role.

The role of family caregiver is one example.  There are 40 million family caregivers in the United States helping with everyday activities and personal tasks ranging from bathing, dressing, wound care, and medication management to transportation and finance and more.

A recent AARP Public Policy Institute report found that men represent 40 percent of all family caregivers; that’s 16 million male family caregivers.

A diverse group in many respects, these husbands, brothers, sons, sons-in-law, partners, friends, and neighbors are joining—either by choice, obligation, or necessity—the army of family caregivers providing care across the country. They are breaking stereotypes and misconceptions. Contrary to popular belief, male family caregivers are not just managing finances or helping with housework. They are also assisting with dressing, bathing, and toileting as well as performing medical and nursing tasks such as injections, tube feedings and wound care.

Many men feel unprepared or uncomfortable taking on these tasks. Although most male caregivers agree that caregiving is stressful, very few reach out for help; they often avoid talking about their situation with others and don’t feel comfortable discussing the emotional challenges of caregiving.

In many cases, male family caregivers are caring for a spouse or partner. The PPI report shows that spousal caregivers in general face unique challenges, in part because they may lack an adequate support network.

However, there were differences between males caring for a spouse and those caring for a parent.

  • They provide more hours of care, and are more likely to be primary caregivers with little to no support from other family members, compared to male family caregivers taking care of a parent or other relative.
  • Men caring for a spouse reported having been a caregiver for a longer period of time than other unpaid male family caregivers (5.1 years compared to 3.9).


Caregiving is not easy for any caregiver, men included.  A recently released series of videos highlight the unique experiences of male caregivers: a  millennial caring for his wife and their young daughter,  a partner sharing the challenges and triumphs of caring for a terminally ill partner,  a traditional-style support group for African-American male family caregivers,  and an organization that support a group of male family caregivers  of partners with a terminal illness.

By seeing and then understanding these diverse experiences, challenges, and needs, we can develop tools and resources to meet this sizable and growing group of family caregivers where they are. Caregiving is an issue where men and women can work together to support one another along this important yet challenging path.



Jean Accius is vice president of livable communities and long-term services and supports for the AARP Public Policy Institute. He works on Medicaid and long-term care issues.





Source link

New Home Alone Alliance Video Series Brings Together AARP and VA to Support Family Caregivers

New Home Alone Alliance Video Series Brings Together AARP and VA to Support Family Caregivers

In 2016, AARP launched the Home Alone Alliancesm in collaboration with the United Hospital Fund, the Family Caregiver Alliance, and the Betty Irene Davis School of Nursing at UC, Davis. The Home Alone Alliancesm is a collaborative that brings together partners from the public, private, and nonprofit sectors to create solutions that support family caregivers. AARP partnered with the U.S. Department of Veterans Affairs (VA), a Home Alone Alliancesm member, to release a video series instructing family caregivers how to perform mobility-related tasks.


While more than 9 million Veterans in the United States receive at least some of their health care through a VA facility, many more Veterans receive care from providers in the community. At VA, we know that millions of family caregivers have been caring for Veterans in their own homes since the founding of our nation.  We know that without those caregivers, many Veterans couldn’t remain close to family and their communities.  For Veterans, caregivers are a force multiplier: they support Veterans in ways that VA cannot, and they are essential to the health and well-being of Veterans.

Being the family caregiver of a wounded, ill, or injured Veteran is not easy work.  That’s why VA’s Caregiver Support Program provides training and education.  VA strives to support the caregiver’s role and to help caregivers understand the impact their work has on the health and well-being of the Veteran they care for and their families.  Family caregivers need to understand how what they do to support Veterans affects them, too.

Family caregivers are an integral part of the Veteran’s treatment team and are essential to the Veteran’s ability to have a positive quality of life.  VA offers a variety of local and national programs.  While these programs can empower caregivers to deliver care to their Veterans with confidence while acknowledging family caregivers’ own needs of self-care, VA knows that we can’t do it alone.

Courtesy of Greg Kahn

AARP Public Policy Institute and the National Alliance for Caregiving’s research in Caregiving in the United States, 2015 underscores the important role of family caregivers play to support our Veterans. In that report, we found that 14% of family caregiving recipients served in the Armed Forces. In addition, our research in the ground-breaking Home Alone report found family caregivers often perform complex medical/nursing tasks with very little guidance from health care professionals, leaving them feeling stressed and concerned about making a mistake. We also found that nearly half (43%) of family caregivers perform mobility tasks for their loved ones, and that 39% of family caregivers performing these tasks reported difficulty in doing so.

Mobility tasks are wide ranging and can include support with assistive devices (like canes and walkers) and help with transferring positions (such as from seated to standing). As most family caregivers know, helping with these types of tasks are more complicated than what is generally considered “help with walking,” especially when we are helping someone who is injured or who has multiple chronic conditions.

For that reason, we launched a video series that instruct family caregivers on how to perform complex medical/nursing tasks. Our videos are evidence-based and include input from both practicing clinicians and family caregivers. To meet the needs of family caregivers performing these tasks, including and especially caregivers of Veterans, AARP PPI partnered with clinicians and experts from VA to produce a video series focused on mobility tasks. The videos are publicly available and include the following topics:


  • Preparing Your Home for Safe Mobility
  • Getting From a Car to a Wheelchair
  • What to Do When Someone Falls
  • Using a Walker or Cane and Navigating Stairs
  • Moving from a Walker to Shower or Bed


Courtesy of Greg Kahn

All videos can be found on the Home Alone Alliancesm  website:

Each video is available in English and Spanish. In 2016, we released a pilot video series on medication management. This month, we are excited to release our next round of videos highlighting mobility tasks. Our videos are available free of charge as part of the Home Alone Alliancesm.


To learn more about the VA Caregiver Support Program, visit  or call the Caregiver Support Line at 1-855-260-3274.  You can also contact your local Caregiver Support Coordinator located at every VA medical center across the United States.

To learn more about the Home Alone Alliance, visit or contact

Susan Reinhard is a senior vice president at AARP, directing its Public Policy Institute, the focal point for AARP’s public policy research and analysis. She also serves as the chief strategist for the Center to Champion Nursing in America, a resource center to ensure the nation has the nurses it needs.




Meg Kabat is the National Director of the Caregiver Support Program at the Department of Veterans Affairs.

Source link

Pin It on Pinterest