TIME Aging

Why Nursing Homes Need to Have Sex Policies

The question of consent is complicated by Alzheimer's and dementia

No one wants to talk about sex in nursing homes.

The need for sex doesn’t disappear as we age, yet many facilities for the elderly have no policy on sex at all and only acknowledge that it happens when there’s a problem, like concern that an Alzheimer’s or dementia patient is being abused. Whether it’s out of ageism or just discomfort with the idea of senior sexuality, nursing homes are not eager to raise the issue, leaving a massive gray area where the line of consent is blurry.

“We’ll ask them about their religion, the music they like, what kind of food they want to eat. We don’t dream of asking them about their preferences around sexuality and intimacy,” said Dr. Cheryl Phillips, a senior advocate at LeadingAge, an association of nonprofit senior services.

The risks of ignoring residents’ sex lives are real. The issue most recently came to light in Iowa, when Henry Rayhons, 78, a longtime state lawmaker, was charged with sexually abusing his elderly wife, an Alzheimer’s patient, while she was living in a nursing home. Rayhons was acquitted this week, after testifying that he and his wife had shared a loving, consensual relationship. The case, which involved family tension between Rayhons and his step-daughters, was complicated by questions of whether someone with dementia can give consent, and whether Alzheimer’s patients have the right to have sex or the right to be protected from it.

Mr. Rayhons could not be reached for comment, and the administrator for the nursing home where his wife resided in Iowa, Concord Care Center, declined to comment.

When Phillips was a practicing geriatric physician, she dealt with sex often. In one particularly thorny case, two residents of a nursing home who both had dementia had begun kissing and holding hands, even though they were both still married to spouses who lived elsewhere. The nursing home lovebirds, though, each believed the other was their spouse. After consulting with the families, the nursing home decided to allow the budding relationship to go forward, since it was bringing the two so much happiness.

“The lesson we took out of that is that it is good to talk with families and be open about values and preferences,” Phillips said. However, she added, “There’s a flip side. Elders deserve privacy. If I’m in a nursing home and I’m attracted to a man, do you have to get my son’s permission for me to be intimate? Where are the boundaries with intimacy? That is where we as a country are really struggling. We don’t have good answers.”

When it comes to managing the sex lives of nursing home residents, the problems are not going away. By 2030, nearly 20% of the U.S. population will be 65 or older, according to Pew Research Center. And according to the World Health Organization, there are 47.5 million people with dementia, a number that will nearly double by 2030.

Today’s aging Americans also grew up with fewer sexual limits than earlier generations and may be unwilling to live in nursing homes that don’t accommodate their sex lives, experts say. “Let’s be real. Baby boomers brought the sexual revolution to America in the ’60s—what are they going to bring to nursing homes?” Roberta Flowers, co-director of the elder law center at Stetson University College of Law, told TIME.

But elder advocates, physicians and nursing home experts say that there is no national standard of best practices for how nursing homes should accommodate residents who are sexually active. The policies that do exist are archaic, regressive and even ageist, and do not acknowledge that nursing home residents could happily have consensual sex with each other.

One exception is the Hebrew Home at Riverdale in the Bronx, which is cited by many as the leader in progressive policies on sex. The Hebrew Home has a Sexual Expression Policy, which “recognizes and supports the older adult’s right to engage in sexual activity.”

Daniel Reingold, the CEO of Riverspring Health, which operates the Hebrew Home, said they developed the policy in 1995 after realizing that residents were having sex and the home had no plan for dealing with it. The problem became clear to him one day when he was walking down the home’s hallway and a nurse came up to him and asked him what she should do about two residents having sex in one of the rooms. “Tiptoe out and close the door!” he replied.

Reingold says many of his colleagues in the nursing home community are reluctant to adopt policies because of liability, and also just plain nervousness around sex. The issue is also complicated by adult children who are uncomfortable with their parents’ sexual lives, particularly if there is adultery. “It reflects ageism at its worst. People don’t want to acknowledge that old people have sex,” he said. “Intimacy and sexuality is a civil right no different than the right to vote.”

The question of whether the elderly should be having sex is most troubling when it comes to dementia. But experts and elderly advocates say people with dementia are capable of consenting to sex, that they are able to express that consent, and that sex and touch can be good for them, which makes it difficult to know when it is appropriate to set limits. Hebrew Home’s policy is explicit that patients with dementia and Alzheimer’s can give consent to sex, either verbally or non-verbally.

“A 12-year-old can’t consent to sex with an adult today or tomorrow. You can’t have the same black-or-white rule for someone suffering from dementia,” said Flowers, the expert on elderly law. “Someone with dementia is not incapacitated all the time for all things. If they are not incapacitated at the moment of the sex act, they have a right to have sex.”

She added, “It’s a difficult issue and it’s not going away.”

Nursing homes must establish policies, and must be comfortable talking about sex with residents and their families, advocates said. “People want to have sex. That doesn’t change merely because you have gray hair,” Flowers said. “We have got to be willing to talk about it.”

MONEY Aging

A Sad Lesson From My Mother’s Decline

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Getty Images

A diagnosis of dementia spotlights the importance of protecting against devastating outcomes.

Lessons of financial awareness and self-sufficiency began early for me. I was just 13 and my sister was 11 when our father left us. My mother was 35 at the time and had no work experience and only a high school diploma. She had dedicated her married life to our family and supporting my father’s career.

She never had access to our household finances, ever. In the blink of an eye she was faced with having to learn how to provide for the three of us. She found a retail position, making little more than minimum wage. My sister and I did what we could to help, both working full-time in addition to going to school.

When my mother was 53, I was 31 and married with two young children. My sister and I started to notice Mom’s increasingly odd behavior. She got lost while driving familiar places, acted like a child, and forgot to bathe and wash her clothes, among other worrisome behavior. We thought perhaps she was dealing with depression and we sought professional help. She was prescribed antidepressants and went to counseling. Over the next year she continued to decline, and lost her job as a customer service representative.

Shortly thereafter, she was a target of a financial scam. She initiated three outgoing wire transfers totaling nearly $30,000, her life’s savings. To her, in her increasing confusion, it was great news! She had won the Mexican lottery! We only learned of it from a bank teller who was suspicious of the wire instructions. (If a loved one is exhibiting early signs of dementia, it’s very helpful to get to know the local bank branch staff and title accounts so they can alert family if they notice odd or uncharacteristic behavior by a longtime customer).

She soon could not pay her mortgage and we were forced to sell her home. She moved in with us. I was able to find an adult daycare to care for her while my husband and I were at work. So on we went day by day. I’d drop my kids off at school and mom off at daycare, at my expense.

Several years later, when she needed around-the-clock care, we looked for a facility that approved Medicaid, since she had no resources to pay for long-term care. This was a painful, difficult lesson – and one that I share with my clients: The time to purchase long-term care is when you don’t need it. My mother would hate knowing that my sister and I are paying out of pocket for preventative care and day-to-day expenses.

Dementia may have a long life cycle. Today my mother is 68. She has not recognized my sister or me for over six years. We have seen firsthand how 13 years in long-term care facilities can devastate a family both financially and emotionally.

There was a time when we had resources to purchase protection again these risks, and we didn’t. Dementia or other disabilities can happen at any age, and the lessons have been painful on many levels. A proud woman, my mother never expected to be financially dependent on anyone. It is a painful lesson for all of us. But if there is a silver lining, it’s this: As a financial adviser, I have been able to help others avoid making a similar mistake.

As the Baby Boomer generation ages, some estimate that as many as one in three individuals will suffer some form of cognitive dysfunction, from mild impairment to full-blown dementia. Our family wasn’t ready for this. Is yours?

———

Margaret Paddock, who oversees U.S. Bank’s wealth managers and financial advisers in the Minneapolis/St. Paul market, is quick to advise her clients to make preparations for catastrophic care and provisions for situations that are hard to envision, but which can come to pass.

MONEY

Why Millennials Are in for a Worse Midlife Crisis than their Parents

senior man in motorcycle gear
Henrik Sorensen—Getty Images

Marriage, it turns out, lessens the dip in happiness that happens in one's late 40s. But most Gen Y-ers have steered clear of the altar.

I’m a happily married 28-year-old with a beautiful wife and son. My life is good.

But if research is correct, I will grow increasingly more dissatisfied with my life over the next 20 years. Which is terrifying.

The midlife crisis is very real.

Studies show that people are pretty happy when they’re young and when they’re older—thank youthful exuberance and not having to work, respectively. But between 46 and 55, folks endure peak ennui.

That happiness ebbs as one ages is not particularly surprising. Careers plateau, dreams are deferred and bills increase in quantity and frequency.

This U-shaped happiness curve has been the focus of a lot of research recently and many nations (from Britain to Bhutan) have shown interest in augmenting citizens well-being with the intent that gross happiness is just as important to the economy as the gross domestic product.

One recent study on the topic—published in the National Bureau of Economic Research—has me feeling just a little bit less sad about my upcoming depression. It found that married folks like myself will experience a less dramatic midlife crisis than their non-married peers.

Authors Shawn Grover and John Helliwell used data from two U.K. surveys and found that while life-satisfaction levels declined for those who married and those who didn’t, the middle-age drop was much less severe for the betrothed, even when controlling for premarital happiness.

Having a dedicated partner, it seems, eases the burden of watching your youth pass slowly through your fingers. Tying the knot can soften the blow, in the other words.

Moreover, people who consider their partner a friend enjoy the most happiness.

“We explore friendship as a mechanism which could help explain a casual relationship between marriage and life satisfaction, and find that well-being effects of marriage are about twice as large for those whose spouse is also their best friend,” the authors wrote.

These findings could leave many of my peers in an emotional nadir: According to data from the Pew Research Center, millennials just aren’t terribly interested in the institution of marriage. Only 26% of people aged 18 to 32 were married in 2013—10 points lower than Gen X when they were of a similar age in 1997, and 22 points below boomers’ marriage patterns in 1960.

My generation still has a few years before they hit the bottom of the U curve. And perhaps an improving economy will make the prospect of marriage more attractive to those in my cohort. Here’s hoping.

I didn’t plan to marry when I did—like most of my generation the thought really didn’t occur to me. But my longtime girlfriend and I walked down the aisle after we found out she was pregnant. And from my current pre-midlife-crisis vantage point, I can see why marrying someone I love and with whom I share a common worldview will make the process of aging slightly less pale and ugly.

Life’s hard, but it turns out that it’s nice to have someone you love to complain about it with.

More From the First-Time Dad:

MONEY retirement income

Why Are States Leaving Billions in Retiree Income on the Table?

Many elderly can afford to pay more in taxes. And with a growing number of needy seniors to support, states can't afford to pass up that revenue.

Illinois is the national poster child for state budget messes. My home state faces a $7.4 billion general fund deficit and a $12 billion revenue shortfall. One proposed idea for plugging at least part of the horrific shortfall: tax retirement income. But our new governor, Republican Bruce Rauner, has rejected the idea.

Illinois exempts all retirement income from state taxes—Social Security, private and public pensions, and annuities. We’re leaving $2 billion on the table annually, according to the state’s estimates. And we’re hardly alone: 36 states that have an income tax allow some exemption for private or public pension benefits, and 32 exempt all Social Security benefits from tax, according to the Institute on Taxation and Economic Policy (ITEP). States currently considering wider income tax exemptions for seniors include Rhode Island and Maryland.

With the April 15 tax day just around the corner, it’s a timely moment to ask: What are these politicians thinking?

Income tax exemptions date back to a time when elderly poverty rates were much higher than they are today (federal taxation of Social Security began in the 1980s). As recently as 1970, almost 25% of Americans older than 65 lived in poverty, according to the Census Bureau; now it’s around 9%. Today, it still makes sense to tread lightly on vulnerable lower-income seniors, many of whom live hand to mouth trying to meet basic expenses. And the number of vulnerable seniors is on the rise.

MORE SENIORS

But much of the benefit of state retirement income exemptions goes to affluent elderly households. The cost of these exemptions is high, and it’s going to get higher as our population ages. In llinois, the number of senior citizens is projected to grow from 1.7 million in 2010 to 2.7 million by 2030. That points to a demographic shift that will mean a shrinking pool of workers will be funding tax breaks for a growing group of retirees.

So there’s a real need for states to target these tax breaks to seniors who really need them. Yet one of the plans floated in Rhode Island would exempt all state, local and federal retirement income, including Social Security benefits—from the state’s personal income tax. The Social Security proposal is an especially good example of a poorly targeted break.

Currently, Rhode Island uses the federal formula for taxing Social Security, which already protects low-income seniors from taxes. Under the federal formula, beneficiaries with income lower than $25,000 ($32,000 for couples) are exempt from any tax (income here is defined as adjusted gross plus half of your Social Security benefit). Up to 50% of benefits are taxed for beneficiaries with income from $25,000 to $34,000 ($32,000 to $44,000 for married couples). For seniors with incomes above those levels, up to 85% of benefits are taxed.

If Rhode Island decides to exempt all Social Security income from taxation, more than half of the benefit will flow to the wealthiest 20 percent of taxpayers, according to an ITEP analysis.

“The poorest seniors in Rhode Island wouldn’t get a dime from this change, because they already don’t pay state taxes on Social Security,” says Meg Wiehe, ITEP’s state tax policy director.

WORKING LONGER

Another tax fairness issue is inequitable treatment of older workers and retirees. The percentage of older workers staying in the labor force beyond traditional retirement age is rising—and many of them are sticking around just to make ends meet. Those workers are bearing the full state income tax burden, effectively subsidizing more affluent retired counterparts.

Some tax-cut advocates might argue that breaks for seniors will help retain or attract residents to their states. But numerous studies show that few seniors move around the country for any reason at all. Just 50% of Americans age 50 to 64 say they hope to retire in a different location, according to a recent survey by Bankrate.com, and the rate drops to 20% for people over 65.

For those who do move, taxes are a consideration—but not the only one.

“A lot of factors go into the decision,” says Rocky Mengle, senior state analyst at Wolters Kluwer, Tax & Accounting US. “Climate, proximity to family and friends are all very important, along with the overall cost of living. But I’d certainly throw taxes into the mix as a consideration.”

Smart tax policy makers and politicians should take all these factors into consideration—especially in states that are facing crushing deficits and debt burdens. Targeted exemptions for vulnerable seniors make sense, but the breaks should be affluence-tested.

“The scales would vary state to state,” says Wiehe. “But a test that makes sure taxation isn’t a blanket giveaway with most of it going to the most affluent households.”

Indeed. In the golden years, not all the gold needs to go to the rich.

Read next: 1 in 3 Older Workers Likely to Be Poor, or Near Poor, in Retirement

TIME Aging

The Health Perks of Arts and Crafts for Adults

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Getty Images

Why the elderly should go DIY

Just as coloring books for adults are starting to fly off the shelves, a new study suggests that older adults who do creative activities like arts and crafts could delay the development of memory problems in old age.

The study, which is published in the journal Neurology, looked at 256 people who were between 85 to 89 years old and did not have any memory related problems at the start of the study. The men and women were followed for four years. The people in the study reported their levels of engagement in the arts, including painting, drawing, sculpting, woodworking, ceramics, quilting and sewing. They also estimated their social life—hanging out with friends, traveling, and attending book clubs and Bible studies—as well as their computer use, which included searching the Internet and buying things online.

People who exercised their artistic muscle were 73% less likely to develop mild cognitive impairment, a condition that can mean memory problems and reduced mental function, than those who didn’t partake in artistic activities. People who did a lot of crafts like woodworking and quilting were 45% less likely to develop mild cognitive impairment than people who did not, and computer users were 53% less likely to develop it compared to adults who didn’t use the computer. Social adults were 55% less likely to have memory problems later on than their antisocial peers.

The researchers also found that other risk factors, like having high blood pressure and depression in middle age, also increased the risk of mild cognitive impairment later in life.

Education may increase the mind’s resilience, which can keep memory loss symptoms at bay, the researchers say. “The reduced risk with computer use and with artistic or crafts activities suggest that these activities should be promoted throughout life,” the authors write. “These activities may also increase cognitive reserve, maintain neuronal function, stimulate neural growth, and recruit alternate neural pathways to maintain cognitive function.”

Kids are encouraged to express their creativity, but arts and crafts may stimulate the minds of adults, too. “There have been a number of studies both in older and somewhat younger individuals suggesting that physical but also mental activity may help prevent development of dementia,” says Dr. James Leverenz, director of the Cleveland Center for Brain Health at the Cleveland Clinic. (Leverenz was not involved in the research.) “We know [mental activity] doesn’t harm anyone, so I encourage it,” he says. “Sometimes that’s just getting out and being social and not sitting around the house all day.”

According to Leverenz, some science suggests that having the brain being stimulated both socially and physically increases growth factors that are important for brain health. At the same time, Leverenz says that the group of adults analyzed in the study was fairly unique since they had no memory problems at their old age. It also should be noted that cause and effect could not be determined in the study. “One of the earliest symptoms of the disease is a loss of interest in activities,” says Leverenz. “It might be that it’s not the loss of activities that cause them to transition, but actually it’s the very early stages of the disease that cause them to be less active.”

While further research is needed, this new study is your best excuse to dig out that artwork—or finger paints—you only thought you grew out of.

TIME Aging

The World’s Oldest Person Has Died in Japan

The World's Oldest Person Celebrated Ahead Of Turning 117
Buddhika Weerasinghe—Getty Images Misao Okawa, the world's oldest Japanese woman, poses for a photo on her 117th birthday celebration at Kurenai Nursing Home on March 4, 2015, in Osaka, Japan

Misao Okawa was 117 years old

The world’s oldest person, who celebrated her 117th birthday less than a month ago, died early Wednesday in Osaka, Japan.

Staff at Misao Okawa’s nursing home said she died of heart failure, the Associated Press reported. She reportedly lost her appetite 10 days ago, and breathed her last with her grandson and carers beside her.

“She went so peacefully, as if she had just fallen asleep,” said Tomohiro Okada, an official at the home. “We miss her a lot.”

Born on March 5, 1898, Okawa was recognized by the Guinness Book of World Records in 2013 as the world’s oldest person. Okawa, who had two daughters and a son with her late husband, is survived by four grandchildren and six great-grandchildren.

[AP]

Read next: 13 Secrets to Living Longer From the World’s Oldest People

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TIME medicine

How 3D Imaging Can Tell Exactly How Old You Are

You may be able to dodge questions about your age, but your face can’t

For the first time, scientists have used 3D imaging of a people’s faces to predict their age. The 3D information was so accurate, in fact, that it was better at pinpointing age than the best known marker, a test that involves studying the DNA.

Reporting in the journal Cell Research, Jing-Dong J Han, from the Chinese Academy of Sciences-Max Planck Partner Institute for Computational Biology, found that certain facial measures are reliable predictor’s of a person’s biological age. The researchers analyzed 3D facial images from more than 300 people, and matched them up with measurements from several dozen blood markers including cholesterol and albumin. Specifically, the width of the mouth and nose, and the distance between the mouth and nose tend to expand with age, and the eyes tend to droop over time. Measuring this change provides a relatively stable way of tracking, and predicting, a person’s age.

“Overall facial features show higher correlations with age than the 42 blood markers that are profiles in routine physical exams,” says Han.

 

Weiyang Chen–2015 Nature Publishing Group. Visualizations of facial aging.

MORE: Human Faces Can Express at Least 21 Distinct Emotions

She arrived at the finding after hearing a colleague present work on using 3D facial images to quantify racial differences. “It immediately struck me that facial images might be a potential good phenotype to include in our study to quantify the extent of aging,” she says. “I did not expect to see such remarkable changes with age, nor did I expect the 3D images to be such an accurate biomarker for biological age.”

Why is it important? Han says that pinpointing how quickly a person is aging via the relatively easy 3D algorithm could have useful health implications that go beyond keeping people honest about their age. Such a measure might provide a window into deeper physiological processes that could be aging abnormally fast. “It might have important implications for assessing the risks of aging-associated diseases, and for designing personalized treatment schemes to improve their life styles and health,” she says.

MONEY retirement planning

The Smart Way to Choose a Retirement Community

The decision to move to a retirement community is never easy. But new pricing information can help you plan.

Moving into a retirement community is a complex and often emotional decision, especially if health issues are a reason. Figuring out the finances of this move adds to the challenge. But by understanding the expenses you’ll need to pay, seniors and their families can make the best possible choices.

The good news is more cost data is now available. A Place for Mom, a senior community placement service, just released what it claims is the first pricing survey of these residences—one that is does not rely primarily on data reported by the communities themselves. Its Senior Living Price Index is based on reports from seniors it has placed. The company works with 20,000 residences around the country and advises an average 50,000 families a month.

The prices are listed by category of residence—independent living, assisted living and memory care (for those with dementia) —as well as by region. (The prices for independent living do not include health care expenses, but they are included for assisted living and memory care.) The survey only covers larger communities—those with more than 20 residential units.

Here are the top-level results for each type of community by region, showing average monthly prices:

  • Independent Living — $2,520 (U.S.); $2,532 (West); $2,362 (Midwest); $2,765 (Northeast); $2,587 (South)
  • Assisted Living — $3,823 (U.S.); $3,771 (West), $3,825 (Midwest); $4,315 (Northeast); $3,562 (South)
  • Memory Care — $4,849 (U.S.); $4,787 (West); $4,958 (Midwest); $5,779 (Northeast); $4,345 (South)

Clearly, senior living can be expensive. But keep in mind, these are averages covering a wide range of prices, says Edward Nevraumont, chief marketing officer at A Place for Mom. So look at these figures as just a starting point. And be sure to consider future price hikes, which are likely to outpace inflation, thanks to rising demand for living units.

Prices don’t tell you everything you need to know about a residence—other factors can be just as important, though harder to compare. There are communities geared to a wide range of preferences, budget levels, and health status. Some provide a full range of food services and on-site healthcare. Some are tightly regulated (nursing homes), while others are less so (independent living). “In our space, people have no idea of what they’re even looking for,” says Nevraumont.

That’s largely because families tend to wait till the last minute to start planning a move—typically when an aging family member is having health issues. The average person working with A Place for Mom adviser is 80 years old vs. 77 a few years ago. Of the clients the company helps place, five of every eight are single women, while two are men, and one is a couple. The average length of stay is 20 months.

For those considering a senior community, Nevraumont offers these tips:

Start shopping before a move is needed. Aside from the research that you’ll need to do, many residences have waiting lists that are months long. You’ll also need to have a conversation with all the affected family members to avoid potential conflicts.

Expect the move to take time. You may think you’ll be able to get Uncle Matt into a new apartment in a couple of weeks. The actual process takes an average of three months—or longer, if you’re on a waiting list.

Keep cash on hand. No getting around it—senior living communities are costly, especially for those with serious health care needs. So you’ll need to build a cash cushion to tap for those bills. “For both your emotional sanity and your financial sanity,” Nevraumont said, “figuring out this stuff early is really important.”

For more advice on choosing a retirement community, take a look at this checklist from AARP.

Philip Moeller is an expert on retirement, aging, and health. He is co-author of The New York Times bestseller, “Get What’s Yours: The Secrets to Maxing Out Your Social Security,” and a research fellow at the Center for Aging & Work at Boston College. Reach him at moeller.philip@gmail.com or @PhilMoeller on Twitter.

Read next: The Secrets to Making a $1 Million Retirement Stash Last

TIME medicine

Many Doctors Don’t Tell Patients They Have Alzheimer’s

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PASIEKA—Getty Images/Science Photo Library RM

It’s hard to believe in today’s era of transparency in modern medicine, but there’s a diagnosis that doctors still try to keep from their patients

In a surprising new survey of patients who were asked about their interactions with their doctors, 45% of people whose doctors treated them for Alzheimer’s never told these patients that they had the degenerative brain disorder.

Led by researchers at the Alzheimer’s Association, the scientists looked at Medicare claim data from 2008 to 2010 for 16,000 people. They were asked, among other things, whether their doctors had ever told them they had Alzheimer’s disease. When the researchers then matched the respondents’ answers to their medical records, and the diagnostic codes that their doctors used to describe their care, only 45% of those who were billed for Alzheimer’s-related care were told by their doctors of their disease.

MORE New Research on Understanding Alzheimer’s

“What struck us was that physicians generally understand the positive benefits of disclosing the diagnosis, and agree with those benefits,” says Keith Fargo, director of scientific programs and outreach at the Association, who oversaw the analysis of the survey data. “But many still don’t do disclosure in their own practice.”

One of the few papers investigating the phenomenon of Alzheimer’s diagnoses found that as few as 36% of doctors said they usually told their patients if they had Alzheimer’s. The main reasons for the intentional omission? Fear of causing emotional distress in their patients and the lack of time and resources to fully explain what the diagnosis means. This was true of both primary care doctors as well as neurology specialists who have more expertise in brain-related disorders.

Dr. Robert Wergin, president of the American Academy of Family Physicians, advocates for transparency and honesty in disclosing diagnoses to his patients in his practice in Milford, Nebraska. But he understands why many physicians might be reluctant to use the word “Alzheimer’s” with their patients. “Labels are important,” he says. “When I label you and say you’ve got Alzheimer’s disease, then you’re likely to say, ‘Well that’s it for me, I better start looking for nursing homes.’”

MORE This Alzheimer’s Breakthrough Could Be a Game Changer

Alzheimer’s is a challenging diagnosis to make on several levels. First, it can only be definitively diagnosed at autopsy, when doctors can see the hallmark amyloid plaques and tangles that cause the gradual loss of memory and cognitive function. There is no blood test or brain scan that can conclusively tell doctors that a patient does or does not have the condition; while promising versions are being developed, it’s still a diagnosis that doctors make based on reports of the patients’ changing intellectual abilities and on psychiatric tests that aren’t specific for Alzheimer’s.

It’s also difficult to tell patients they likely have Alzheimer’s because there are currently no effective drugs for the disease. Medications can slow the effects of the cognitive decline, but nothing can stop or reverse the march of worsening symptoms. Wergin notes that once a patient is labeled with Alzheimer’s it could, at least before the Affordable Care Act, affect that patient’s ability to get insurance for nursing home care. “Once I label you, it’s in your chart. If an insurance company extracts your data, I’m not going to insure you because you are at higher risk of drawing on your coverage,” he says.

MORE New Test May Predict Alzheimer’s 10 Years Before Diagnosis

Wergin says that doctors may be over-anticipating the emotional distress that an Alzheimer’s diagnosis can bring. While the news is certainly difficult, most patients and their caregivers may already be aware that a neurodegenerative disease like Alzheimer’s may be present. And while there are no treatments that physicians can prescribe for their patients — at least not yet — Fargo and Beth Kallmyer, vice president of constituent services at the Association, note that it’s particularly important for Alzheimer’s patients and their families to know what to expect so they can begin planning. “There might not be a pill that slows the disease down or there might not be cures, but there are things people can do to impact their everyday quality of life,” says Kallmyer. “They can build a care team, and prepare advanced directives. And if a caregiver has knowledge of the disease, they can make things better in the day to day world of the person with the disease. If they don’t know about the diagnosis, they may not get that support.”

MORE Breakthrough Discoveries of Alzheimer’s Genes

But making doctors more comfortable with the diagnosis will take more structural changes in the way we deliver health care. The Alzheimer’s Association is supporting legislation that would reimburse doctors and their staff for a longer discussion about Alzheimer’s and how to plan for the disease. More medical schools are also including discussion about such planning in their curricula, as doctors in coming decades will be increasingly called upon to make this difficult disclosure.

Read next: A Simple 3-Part Test May Predict Alzheimer’s

Listen to the most important stories of the day.

TIME Aging

Old People Should Be Part of NYC Workforce: Report

'Many of the older adults that we speak with want and need to work'

A skilled-labor shortage has left small businesses across the country scrambling to fill positions and New York City health organizations say there’s a simple solution: hire older workers.

“Hiring, retaining and using older workers strategically can solve a variety of pressing problems that employers in our city face,” said Shauneequa Owusu, a health policy expert at the New York Academy of Medicine, which co-produced a new report with the Robert N. Butler Columbia Aging Center at Columbia University and the Mayor’s office’s Age-Friendly New York City.

Read more: The New Age of Much Older Age

The report, published Wednesday, suggests that workers 55 or older can bring skill and expertise while only requiring minimal adjustment on the part of small businesses (technology training can get older workers up to speed quickly, the report found). At the same time, research suggests the workplace can benefit from age diversity, too. “There is evidence that mixed age teams in the workplace are more productive than teams of workers of the same age,” the authors write.

“Many of the older adults that we speak with want and need to work. Furthermore, there’s growing evidence that it’s helpful to their healthy aging and wellbeing to continue working,” said report author Ruth Finkelstein at Columbia’s aging center. Recent research points to a clear association between being employed and improved mental, physical and emotional health, she said.

The finding comes as more and more Americans want to avoid a traditional work-free retirement. According to the new research, 700,000 workers are older than 55 in New York City alone, and many say they do not plan to retire conventionally.

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