Tag Archives for Caregiver

Study Finds Caregiving Becomes Second Job for Many

Published in Pawtucket times on April 12, 2004

The demands of caregiving can seem like a 36-hour workday, Alzheimer’s researchers Nancy Mace and Dr., Peter Rabins tell us.

So true. A new study compiled by the National Alliance for Caregiving (NAC) and the AARP that was released last week supports the researcher’s views – that caregiving can consume one’s life, often becoming a second job for many.

According to the 138-page report, entitled, “Caregiving in America,’ more Americans are now holding “second jobs” – functioning as the family caregiver.

The national caregiver survey, which was funded by MetLife Foundation, estimates there are 44.4 million adult caregivers who provide unpaid care to another adult. This care ranges from helping another manage finances, shopping for groceries, doing housework, and assisting others getting in and out of beds or chairs, getting dressed, getting to and from the toilet, bathing, showering and eating.

The study found unpaid care- provided by family caregivers – totaled $257 billion annually. Quite a sum.

Tshe caregiver study, released on April 6, paints a picture of the typical caregiver – 46 years old, married, has some college experience, and provides care to a woman age 50 and older.  The caregiver’s recipient is most likely an older female who is widowed.

The findings are based on a national survey of 6,139 adults, 1,247 of whom are qualified as caregivers. The margin of error for a sample this size is 2.8 percent, at a 95 percent level of confidence.

Almost six in 10, or 59 percent, of these caregivers either work or have worked while providing care, the study found. Moreover, 62 percent have had to make some adjustments to their jobs, from arriving late to work to giving up a job entirely.

Caregiving does not only impact the personal and working life of women, the study says, but it impacts men, too. Almost four in ten (39 percent) caregivers are men, and 60 percent of these individuals are working full-time.

In a written statement announcing the release of this study, the release of this study, Gail Hunt, NAC’s executive director, noted that the study found caregivers need more information and education. “Two-thirds of caregiver respondents says they need help or information on at least one of 14 activities or issues that caregivers commonly face,” she said.

The study’s findings indicate that three in 10 caregivers carry the heaviest load and are most likely to report physical strain, emotional stress and financial hardship as a result of their caregiving responsibilities, compared to caregivers who provide fewer hours of care and perform fewer  demanding tasks.

In addition, the study found caregivers who provide higher levels of care (most likely women) may find their responsibilities complicated by the fact they tend to be older and more likely to say their health is only “fair,” compared to younger caregivers.

Nearly eight in 10 people who need care are age 50 or older (79 percent), the study found. Caregivers say these older care recipients are afflicted with age-related health problems (15 percent), specifically heart disease, cancer, diabetes, Alzheimer’s or other mental confusion ailments.

But younger recipients (ages 18-49) of caregiving often face problems of mental illness and depression (23 percent), the study added.

Caregiving may consume a person’s later years.

The study found the average length of caregiving provided is 4.3 years; however, three in 10 caregivers report providing care for more than five years.

Older caregivers (ages 50 and older), who tend to be caring for their mothers and grandmothers, are among the most likely to have provided care for 20 years or more. The survey found 17 percent of caregivers between the ages of 50-64 years and 18 percent of those over 65 have been providing care for more than a decade.

“I think people who are dealing with caregiving are unaware that many of their coworkers are dealing with the same thing,” AARP Board Member Jennie Chin Hansen claimed in the written statement. “This report shows just how common this  is,” she says.

Like the caregiver respondents of NAC/AARP’s caregiver study, tens of thousands of Ocean State caregivers juggle the demands of taking care of an older relative while taking care of their family and working a job. The study’s findings are just another reason why Gov. Doanld Carcieri and state lawmakers must adequately fund the Department of Elderly Affair’s (DEA) copay program and respite programs.

DEA’s co-pay program assists 1,500 frail seniors who do not qualify for the state’s Medicaid program, to partially pay for the services or certified nursing assistants (CNAs) to assist with bathing, meals, shopping, laundry and light housekeeping. In addition, DEA’s co-pay program also provides subsidies for adult day care.

Last October, DEA’s freeze on new admissions to its co-pay program left more than 200 frail seniors  on a waiting list for home and community-based services. Although Carcieri has increased funding for DEA’s co-pay program by $ 200,000 in his 2005 budget, senior groups say this amount is still not enough. The governor’s increase in his budget is estimated to only serve 60 to 80 out of the 200 seniors currently on this waiting list.

DEA’s freeze on new admissions to its respite program, which enables caregivers to take a break from the grueling demands of taking care of frail family members, may adversely impact the health and wellbeing of caregivers who can’t take advantage of this program.

The freeze placed on the respite care program will continue for the rest of this fiscal year- nobody is sure how long the freeze for this initiative will last.

In years to come, we will see a growing number of Rhode Islanders  taking on the role of unpaid caregivers (a second job) to keep a frail family member at home. Lack of access to community-based services and to caregivers oftentimes will lead to placement in  a costly nursing home.

From a budgetary stance, Carcieri and state lawmakers may well want to adequately fund DEA’s co-pay and respite program because of the ultimate cost savings to the state budget. On the other hand, supporting a policy that assists caregivers to keep seniors independent and in their homes is simply the right thing to do.

Documentary Explores World of Alzheimer’s Victims, Caregivers

Published in Pawtucket Times on January 26, 2004

Sally Weiss, my 80-year-old mother, has Alzheimer’s disease.

Over the past seven years, the progression of this disease was noticeable to me when I made my trips back home to Dallas, Texas.

However, my family, just like the tens of millions of families across the nation who have loved ones afflicted with this mental disorder, tries to understand and cope with the emotional social and financial impact of this devastating disease.

Last Wednesday, a hard-hitting, nationally broadcast PBS program, “The Forgetting: A Portrait of Alzheimer’s,” sought to bring more “insight, context, hope and help” to viewers who tuned in, hoping to better understand this frightening disorder.

The 90-minute documentary explores Alzheimer’s disease by weaving together the history and biology of the disease, the real-life experiences of three Alzheimer’s patients and their families who lives are touched by Alzheimer’s and the latest research findings that may lead to a cure.

Shame on you if you missed last week’s showing of “The Forgetting,” but you’re in luck, especially if you want a second chance to see the PBS program before it comes out on video. The Rhode Island PBS program affiliate, WSBE 36, has scheduled a rerun of this broadcast for Jan. 29 at 9:00 p.m. and again on Feb. 5 at 2:00 p.m.

The PBS documentary is based on David Shenk’s best-selling book, “The Forgetting.”

After overhearing a conversation in a restaurant about a man and his wife- a woman in her 50s afflicted with Alzheimer’s – he realized that this woman could not recognize her husband. By the time Shenk left the restaurant, he was horrified at the thought of his wife not even knowing who he was, being a stranger to her during the best years of their marriage. This thought ultimately propelled Shenk, a journalist and occasional National Public Radio commentator, to explore the mysteries of Alzheimer’s leading to the writing and publication of his 292-page book.

The PBS documentary warns that with the graying of our nation, we will see a growing number of person’s afflicted with Alzheimer’s disease which is considered  to be an age-related disordered.

By 2011, the first of the nation’s 76 million baby boomers will turn age 65, ultimately setting off a demographic time bomb, creating this Alzheimer’s epidemic.  When this occurs, Alzheimer’s may well become American’s biggest public health concern.

Using special animation, “The Forgetting” helps viewers better understand how Alzheimer’s begins, how it does damage and what kind of new medical treatments are being used to treat it.

“The Forgetting” also focuses on the real-life stories of three families, showing how the disease slowly impacts the family caregivers and the loved ones afflicted with Alzheimer’s.

“Like so many coping with this tragedy, the families who share their stories in  “The Forgetting” all have one major motivation in common – they want to let other people facing similar situations know that they are not alone, that there is help and that they too, can find the strength to face a  tragedy like Alzheimer’s with dignity and grace,” said Elizabeth Arledge, a respected film producer who created the PBS documentary, in a written statement.

“These families are drawing on reservoirs of strength and compassion to stay focused on seeing the person they love instead of the symptoms of the disease,” added Arledge.

Liz Morancy, executive director of the Alzheimer’s Association’s Rhode Island chapter, calls of Rhode Islanders to watch a Rhode Island PBS program. “The 13th State,” on Wednesday, Sept. 28, 2004 at 7:30 p.m.

Scheduled one day before the re-airing of “The Forgetting,” the 30-minute local PBS program will feature a panel discussion about Alzheimer’s.

Panelists included Dr. Cynthia Holzer, of Roger Williams Hospital, along with 84-year-old Sterling Ivision, who is in the early stages of Alzheimer’s, and his daughter Kate Meleny.

“The Forgetting’ shows what a really hard, hard disease Alzheimer’s is,” said Morancy, “but by listening to Ivision, you will learn that he still drives and lives independently. People who have early-stage Alzheimer’s can still have a quality of life.”

Check out the Web site, www.pbs.org/theforgetting. This site will provide advice, resources, and chances for caregivers of Alzheimer’s victims to share emotions and insights. In addition, a downloadable viewer’s guide will provide practical information and answer questions.