Tag Archives for caregiving

Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…

Caregivers Taking Care of Persons with Dementia Have Unique Needs

Published in the Woonsocket Call on December 9, 2018

Being a caregiver 24/7 to a person in relatively good health is a tough job. But, caring for someone with dementia, becomes a 36 hour, say Authors Nancy L. Mace and Peter V. Rabins, in their ground-breaking book (published in 1981) on providing care for those with the devastating mental disorder.

The Washington, DC-based AARP releases survey findings last month that takes a look at this “unique subset of caregivers” who are taking care of persons with dementia and other cognitive disorders. Caregiving takes a physical, and emotional toll on these individuals, forcing them to put in longer hours providing care and making adjustments at work and in their personal relationships, says the findings of the newly released study.

The AARP online national survey (of caregivers 18 and older) takes a look at the demands on 700 caregivers taking care of persons with dementia or other forms of cognitive impairments (most often their parents), as well as 400 caregivers who were providing care for a loved one without dementia. Regardless of the situation, on average, caregivers report having been caring for their loved one for almost 3 years.

“Family caregivers take on big responsibilities that can be physically, emotionally and financially challenging. AARP’s new research shows that this can be particularly true for those caring for loved ones with dementia,” said Nancy LeaMond, AARP Chief Advocacy and Engagement Officer, in a statement released with the study report, Caring for People with Dementia: Caregivers’ Experiences. “That’s why AARP has developed resources to help family caregivers balance their own needs with the needs of their loved one,” adds LeaMond.

The AARP Study Found…

Obviously, it is time consuming to be a caregiver. The AARP Survey’s findings, released on November 30, 2018, found that 7 in 10 of those surveyed spend less time with friends and more than half spend less time with other family members because of the intensity of caregiving responsibilities While 75 percent of the survey respondents reported that caring for someone with dementia has brought about closer relationships and more meaning to their lives, the findings also indicate that caregiving experiences bring greater challenges to their lives, too.

According to the 26-page AARP report’s findings, those caring for persons with dementia (more likely a parent) spend on average 13.7 hours per week caregiving while caregivers, taking care of persons with no cognitive afflictions, spend 11.7 hours (more likely a spouse or partner or a friend or neighbor). Three in ten of the caregiver respondents (over age 35) spend over 21 hours per week caregiving, says Study’s findings.

Most of the caregiver respondents providing care to persons with dementia see the devastating disorder’s slowly progressing over time. But younger caregivers perceive that the onset of cognitive decline as suddenly happening.

About 32 percent of the caregiver respondents providing more intense caregiving to persons with dementia say managing their emotions and the demands of care (26 percent) they deliver as the biggest challenges the face.

Caregivers taking care of persons with dementia also reported negative health behaviors. They slept less (71 percent), had more anxiety (65 percent) and depression (54 percent), and spent less time on themselves and with their friends. Research studies reveal that social isolation and loneliness are linked to poorer physical and mental health outcomes.

Not only are the millions of family caregivers for those with dementia less socially connected, they are significantly more likely to put off medical care – over half (55 percent) have done so, compared to just 38 percent among the total caregiver population. However, there were positive health behaviors identified in the poll as well – 79 percent took steps to maintain or improve their brain health and 47 percent exercised more.

About 62 percent of those taking care of persons with dementia state that their intense caregiving responsibilities have led them to working different hours, leaving work early (62 percent) or take paid (53 percent) and unpaid time off (47 percent) for caregiving duties, and also worry about their finances.

But, two-thirds of all caregivers surveyed say they feel closer to their loved one, but those taking care of persons with dementia were more likely to say their relationship with their loved one over time had grown further apart (22 percent) than others. Those caregivers of persons with dementia were more likely to say the relationship with other family has been strained.

Finally, caregiver respondents say that they are receiving what they need from health care providers yet those caring for someone with dementia also have sought out more information about caregiving and from a greater variety of sources.

The AARP survey was conducted October 1-10, 2018. Data are weighted by income, gender, and age according to caregiver benchmarks obtained in Caregiving in the U.S. (2015).

Finding Caregiver Resources

AARP helps family caregivers find the information and support they need to manage their own care along with their loved one’s care. Go to http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Dementia Care Guide and the Community Resource Finder.

For more info, contact AARP Researcher G. Oscar Anderson at ganderson@aarp.org.

Midterm Elections are Here: Your Vote Sends a Message to Congress

Published in the Woonsocket Call on November 11, 2018

The mid-term elections are here and Americans have an opportunity, if they choose to vote, to send a strong message to Capitol Hill about what policy issues are important to them. All 435 Congressional seats are on the ballot including 35-Senate seats. The outcome of these political races will ultimately impact older Americans. Will Congressional lawmakers work to ensure the solvency of Social Security and Medicare, or protect those with pre-existing conditions? Or will they put political differences aside to craft legislation that will put the brakes to spiraling prescription drug costs.

Last month, AARP released, a 52-page report, “2018 Mid-Term Election Voter Issue Survey,” that found that the majority of those surveyed say the following issues will help them make their voting decisions in days: lowering health care costs (79 percent), strengthening and reforming Social Security (75 percent) and Medicare, (70 percent) and putting the brakes to skyrocketing prescription drug costs (74 percent).

AARP’s survey data were collected by Alan Newman Research (ANR) between July 7 and July 18, 2018. ANR conducted a total of 802 telephone interviews of registered likely voters age 50 and older. All data were weighted by education, race/ethnicity, age, gender, and census division according to Current Population Survey statistics provided by AARP.

What Issues Are Important to Older Voters?

Let’s take a closer look at AARP’s July telephone survey findings…

The top issue for the Democratic survey respondents was health care costs, Social Security, drug costs and Medicare while Republicans identified national security as their issue.

People become eligible for health insurance through Medicare when they turn age 65. Democrats responding to the AARP survey (77 percent) were more likely to support giving those age 50 to 64, the option to buy health insurance through Medicare than the responding Republicans (57 percent).

Vermont Senator Bernie Sanders and other lawmakers have proposed a national health plan in which all Americans would get their insurance from a single
government plan (called Medicare-for-All). The researchers noted that Democratic respondents gave the thumbs up (75 percent) to supporting this legislative policy while only 34 percent of the Republican respondents supported the health care policy.

The AARP survey also found that 66 percent of the respondents supported allowing Medicare to negotiate lower prescription drug costs to increase the solvency of the program.

Last year, Congress passed legislation that required pharmaceutical companies to contribute more to contribute more to close the Medicare Part D coverage gap to reduce the high out-of-pocket cost of drug costs. The pharmaceutical lobby is working to reverse this requirement. The AARP survey found that 78 percent of the age 50 and over respondents support the existing requirement to contribute more to close the Medicare Part D coverage gap.

Federal law prohibits insurance companies from charging those with pre-existing conditions more for health coverage. While some want to repeal this law because they believe the person should pay more, others say that paying a higher premium is unfair. The AARP survey found that 84 percent of the women and Democrats surveyed were more likely to say that the higher costs of health care is unfair for those with preexisting conditions.

Current federal law allows insurance companies to charge up to three times more for health insurance for those over age 50. Some Congressional lawmakers propose increasing this charge up to five times more for health insurance. Eighty three percent of the older survey respondents oppose this, calling any changes unfair.

Over half of the age 50 older survey respondents have caregiving experiences. Two in five of these respondents believe they will become caregivers. The survey found that 75 percent of the respondent’s support employer requirements for family caregiving. The requirements include: ensuring that employees can not be fired for taking time off for caregiving; allowing the use of existing sick leave for caregiving activities; allowing a limited amount of unpaid and paid leave for use by caregivers.

Eighty seven percent of the AARP survey respondents believe Congress should pass laws to protect caregivers from being fired for taking time off to care for a loved one. Most of these respondents (88 percent) also believe that stronger laws are needed to protect older workers from age discrimination.

Currently, there is discussion on Capitol Hill about the need for a rule that requires professional financial advisors, when giving advice to their older clients about their retirement savings accounts, to give advice that is in the best interest of these individuals. The AARP survey found that 69 percent of the survey respondents agree to this rule.

Phone App Informs Older Voters on Aging Issues

The Washington, DC-based AARP today launches “Raise Your Voice,” the nation’s first comprehensive advocacy and voting app for smart speakers (works on Amazon Alexa and Google Home) . The voice-enabled experience is designed to help older voters to use smart speakers to become educated on a wide range of aging issues — including Social Security, Medicare, prescription drugs, Medicaid and caregiving.

“This groundbreaking skill empowers voters at a time when people are looking for trustworthy, accessible sources of information,” said John Hishta, AARP Senior Vice President of Campaigns, in a statement announcing the Oct. 11 release of the phone app.

To invoke the app, the user simply says their smart speaker’s wake command, followed by “Open Raise Your Voice.” With days before the upcoming midterm elections, the user can direct “Raise Your Voice” to look up polling information and send it directly to the user’s cell phone. Similarly, the user can command the app to provide information on AARP issues.

“Traditional voter education is laudable and important work, but it’s a leap forward to develop technology that better supports voters as they seek out the location of their polling place, information on key issues, and the ability to contact their elected officials,” said Sami Hassanyeh, AARP Senior Vice President of Digital Strategy and Membership. “

The app is available at http://www.aarp.org/raiseyourvoice.

Send a Message to Congress

Robert Roach, Jr., President of the Washington, DC-based Alliance for Retired Americans, calls on older voters to “Know your rights before heading to the polls.” Your state’s Secretary of State’s website can provide details about voter identification requirements and other laws. If you are encountering problems with voting or suspect voter rights at your polling site, seek out an elected official to discuss, suggests Roach. Also, call the voting rights hotline at 1-866-OUR-VOTE (687-8683).

“Bring a snack, a book and even a chair if you think there may be a line. Don’t go home until your vote has been counted,” says Roach. “An unfortunate election result could lead to health insurers charging people aged 50-64 five times more than younger consumers for the same coverage. A good result could lead to an expansion of your earned Social Security benefits,” he says.