Category Archives for Caregivers

Caregivers Find it Difficult to Shop at Retail Stores

Published in the Woonsocket Call on September 22, 2019

Survey findings from a recently released national study, by the Washington, DC-based AARP and NORC at the University of Chicago, will send a strong message to America’s businesses.

With the graying of America, retail stores must change the way they do business in order to attract customers who provide unpaid family caregiving to their loved ones.

The study, “Family Caregiver Retail Preferences and Challenges,” and its survey findings were presented at the AARP Executive Summit, The Price of Caring, on September 10 in Washington, D.C. The summit’s mission was to highlight public- and private-sector solutions to support Americans who care for an older or ill loved one.

In-store Shopping is a Struggle

While juggling a multitude of caregiving tasks, caregivers say a lack of accommodations for their frail family members is a problem for shopping at retail stores. The study’s findings reveal that in-store shopping is a struggle for one-third of the nation’s 40 million unpaid family caregivers. Many leave their loved ones at home or choose to shop online, despite strongly preferring the in-store experience.

A whopping 93 percent of caregivers surveyed say they shop for the person they care for. Among these caregivers, most report shopping monthly for groceries (87 percent), basic household items (65 percent), toiletries (61 percent), prescription drugs (58 percent) and other health products (52 percent for persons they regularly care for.

“Americans who take care of loved ones are often strapped for time, and many face logistical challenges doing something as simple as going to the grocery store,” said Nancy LeaMond, AARP executive vice president and chief advocacy & engagement officer, in a September 10th statement announcing the study’s findings. “Retailers can score big with caregivers if they make it easier for them to bring their loved ones along when they shop,” says LeaMond.

The AARP survey findings detail simple but important changes retailers should consider to enhance the shopping experience of caregivers. Businesses can provide dedicated parking spots and ample comfortable reserved seating for older shoppers to rest, wider aisles that easily accommodate both wheelchairs and shopping carts, longer store hours, and train their staff to specifically work with caregivers.

The Pros and Cons of In-Store and On-Line Shopping

The survey findings in the 26-page study reveal that 82 percent of the caregiver respondents prefer to shop in-store because of the ability to touch the products and they don’t have to wait for a product’s delivery or pay for shipping charges. But 84 percent say they shop online for ease and convenience, despite preferring an in-store experience. Forty three percent of the respondents say a major reason they leave their loved one at home when shopping is because the store environment is too difficult for the recipients of their care.

More than 56 percent of the caregiver respondents say that when shopping on behalf of their loved ones they spend at least $50 per month. Forty one percent note they spend more than $250 or more a month when shopping for a loved one.

Businesses Must Listen to the Shopping Needs of Caregivers

We listen to a lot of caregivers and it seems clear that, regardless of the challenge, the help they want most is for somehow to find a convenient, time-efficient and accommodating means of getting what they need, when they need it,” said Rhode Island AARP State Director Kathleen Connell. “In retailing, convenience is a huge competitive advantage these days. But there are aspects of convenience that – for caregivers – go beyond finding what you need on Amazon and having it delivered the next day or two,” says Connell.

“Some caregiver needs are in the ASAP category and they head for brick and mortar retail establishments. Shopping for food and clothes, picking up a prescription or medical supplies, even simple things such as picking up dry cleaning feel like ‘emergencies’ because time is so. Imagine this in the context of being with someone in a walker or wheelchair,” notes Connell.

Connell urges retailers to take this report to heart. “There is an incredible amount of goodwill to be earned if you think about caregivers, as well as those in their care, and give them the consideration that makes their tasks a little easier.”

The AARP survey was conducted by NORC at the University of Chicago and is based on a nationally representative survey of 1,127 Americans who provide unpaid care for an adult age 18 or older. The survey was funded by AARP and used AmeriSpeak®, the probability-based panel of NORC at the University of Chicago. Interviews were conducted between Aug. 1-19, 2019, online and using landlines and cell phones. The overall margin of sampling error is +/- 4.1 percentage points at the 95% confidence level, including the design effect. The margin of sampling error may be higher for subgroups.

To read the full report, visit: http://www.aarp.org/caregivershopping.

For more details about AARP’s Caregiver Shopping study, contact Laura Skufca, AARP Research, Lskufca@aarp.org.

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.