Tag Archives for caregiving

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.

AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.