The New Old Age - Who We Are Now

NY Times

We’re still, in most cases, female.

We’re still likely to be employed, usually full time.

We spend an average of 19 hours a week at this second job, caring for our older relatives.

Every few years, the National Alliance for Caregiving and AARP team up to survey the nation’s family caregivers and produce a massive, highly detailed study funded by Metlife. The first of these reports appeared in 1997, the next in 2004. The latest, released this week, provides an interesting picture of what’s changed in five years and what hasn’t.

The overall report, “Caregiving in the U.S. 2009” [pdf], includes people taking care of family members of any age, including children with special needs. But the researchers, helpfully, have also published a companion study of people caring for adults over 50.

It shows that elder care remains primarily women’s work and that most caregivers continue to juggle unpaid caregiving and paid work.

What’s changed? The people we take care of are older. In 2004, the proportion of elders over age 75 was 55 percent; now it’s 63 percent. We’re older, too: caregivers’ average age rose from 48 to 50. Unsurprisingly, then, a higher proportion are caring for seniors with Alzheimer’s disease and other forms of dementia.

But we have less paid help. The proportion whose older relatives had aides, housekeepers or other paid workers dropped to 41 percent from 46 percent; the use of paid help also declined among all caregivers. The data don’t specify why families use less paid caregiving, but AARP’s Elinor Ginzler pointed to the most plausible explanation.

“Likely, this is related to the economy,” Ms. Ginzler said this week. “They can’t afford it.”

Perhaps in response, unpaid caregiving supplied by other family and friends has risen.

I’m always a little relieved, since we all hear too many heartbreaking stories of families crushed by their responsibilities, to be reminded by this and other caregiving studies that a majority of families handle the burden without great hardship or crippling trauma. Most respondents in this study said caregiving hasn’t harmed their own health or created much physical strain, and only a third found caregiving highly stressful emotionally. (To which I can hear a chorus of readers replying, “Just wait.”)

What kind of support would families caring for their elders most like to see? Topping the list is a $3,000 tax credit, followed by respite services, a voucher program that would pay family members minimum wages to be caregivers, and transportation services.

Focus On Orange County CA Caregiver Resource Center
Story from OC Register

Claudia Ellano knows more about caregiving than she would like.

She spent six years working and also caring for her husband, Moe, who died of chronic obstructive pulmonary disease.

And she is the director of the Orange Caregiver Resource Center, the only Orange County agency focusing specifically on the needs of caregivers who are coping with a loved one's chronic illness.

The Caregiver Resource Center (caregiveroc.org) is a program of St. Jude Medical Center and part of a statewide system of Caregiver Resource Centers for people 60-plus. It is financed through county, state and federal agencies.

A chat with Ellano:

Q. Let's talk about the typical help a caregiver can receive from your agency.

A. Well, we have a staff ready to assist with problem-solving resources and support. Just call (800) 543-8312 .

A care coordinator will talk to them about what the caregiver is needing the most — from the community or for themselves.

Q. How do you know what type of needs the loved one has?

A. We don't assess the patient. We are not here to solve problems for the patient. We are strictly here to help the caregiver with an action plan, including proper referrals, how to talk to the doctors, where to go to get assessments.

But they have to start with a diagnosis.

Q. This is a rhetorical question but — do caregivers need a lot of help today?

A. We've always known caregiving has an emotional and economic impact. But add the issues of today's economy, people losing their jobs for example, and the impact is huge! We want to be the entry point resource center for caregivers, and we are part of a large partnership of agencies ready to help.

Q. OK. But you and I know money becomes the big problem. Unless the person you are caring for has longterm-care insurance, families have to shoulder most of the cost of caregiving.

A. We are woefully lacking in public policy for longterm care in this country.

There is an assumption that Medicare pays for senior care, but in fact it only pays for a specific number of days after an acute episode, such as a stroke.

If someone needs longterm care in the community, it's pretty much out of their own pocket. Medi-Cal might be able to pay for some help, but we know this is where a lot of the cuts are coming.

Some senior HMOs have respite dollars built in, but these are short term and intermittent kinds of funding.

Adult day healthcare, other forms of relief, are almost all private pay.

It's a challenge that isn't going to get easier.

Q. Most people think of nursing homes when they think of caregiving costs.

A. Those costs are high but only impact about 5 percent of those needing care. People want to keep their loved ones at home.

Q. What kind of calls do caregivers make to you?

A. Here's a common one: I only make $12 an hour, but the agency wants $18 to $20 an hour to provide care for my mom.

Now, even if you haven't been laid off, there's a dilemma balancing that cost of care.

Q. Not everyone is equipped mentally to do caregiving.

A. No. It can be a beautiful spiritual journey.

We can help you stay healthy and make sure you have done the legal and financial planning necessary, made your home safe for your loved one, have meals delivered, and so on.

But not everyone wants to go on this journey. Everyone has different stress levels.

Q. How's your budget this year?

A. We slipped by without being targeted. We can still provide services.

There are several networks and agencies ready to help caregivers. Here are a few sites to check out:

•Eldercare.gov – local resources such as transportation, meal delivery, respite care.

•Medicare.gov/caregiving/ - should answer all your questions about Medicare services available.

•Snapforseniors.com – local resources and options in senior housing, including nursing homes, assisted living, senior living or retirement communities.

•Lotsahelpinghands.com – caregivers can sign up for friends, family, neighbors and other volunteer help.

•Caring.com – support groups and social networking.

•AboutEvercare.com – Evercare Solutions for Caregivers – an insurance program – will provide an assessment and care plan for non-members for $580. Care management after the initial assessment to help coordinate ongoing help and support is $115 per hour.

Americans Spend Millions On Caregiving
Many are forced out of their jobs and homes because of the strain to provide for their loved ones

Story from OC Register

Jodee Kalmen drew the caregiving card four years ago.

She was 50 when her husband, Peter, then 57, was diagnosed with frontal lobe dementia. His ever-worsening symptoms had already cost him his job.

She was a stay-at-home mom with two sons but became a school bus driver. They lived off her small salary, his Social Security Disability, the equity in their home.

Today, she is one of 44 million Americans responsible for caregiving a spouse or parent. The backbone of the nation's long-term care system, they represent $375 billion annual value in the care they provide.

But in these hard economic times, a new survey shows caregivers are facing escalating financial and emotional hardships that are rarely, if ever, addressed in national debates about funding health care.

There are statistics, data and websites offering help, but the truth is caregiving is where childcare was years ago, says Sherri Snelling, senior director of Cypress-based Evercare.

Few employers offer benefits. Many adult children are losing their jobs, forcing them to move in or move home parents who were in care institutions. Most caregivers are not prepared for the expense and the emotional drain.

In the next two weeks, we'll look at the data and the solutions, the questions and the few answers.

The Kalmens thought their future was secure.

"My husband and I did everything we were told to do; buy a home, save money for retirement and open college funds for our boys," Jodee Kalmen says. "What they did not tell us was that dementia was going to enter our lives and devour our financial future.

"Besides watching my husband slowly die, I have had to live on pins and needles riding the uncertainty of the economy."

After 21 years in her home, Kalman says she is down to her last financial resource — her husband's IRA, which has been decimated by the declining stock market. She's already refinanced the home three times.

She has no health insurance because she lost her job.

"I am scared," she says.

She's not alone.

A survey conducted by Evercare by UnitedHealthcare and the National Alliance for Caregiving concludes 43 percent of caregivers have taken a pay cut or have been forced to work fewer hours as a result of the recession.

Some have taken on additional job or are able to work more hours, but almost 50 percent told surveyors they have exhausted their savings and 43 percent have had to borrow money to continue caregiving.

"These people are a significant part of our society, yet their economic impact is often unmeasured and, frankly, they are discounted in the view of the public," says Dr. Alan Sokolow, chief medical officer for United Health Care.

The concern is a potential cutback in individual caregiving, he says. Many have said they are cutting back or might be forced to cut back hours spent caregiving because of employment-related demands.

"There needs to be continuing awareness of the importance of providing assistance for caregivers," Sokolow says.

But the facts are these:

•With 30 years added to the average lifespan in the 20th century, most boomers can expect to spend some years as a caregiver for parent or spouse.

•The increasing number of childless women and others without family ties brings new challenges to financing caregiving.

•Caregiving only recently became an employee benefit for some workers; few caregivers are able to access these benefits today.

•64 percent of caregivers are struggling to pay their own bills.

•63 percent have stopped saving for their own retirement or future caregiving.

•36 percent say they have found that government agencies or nonprofit groups are less able to provide services or outside help.

Next: Where caregivers can look for help today, and in the future.