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How not to grow old in America

The assisted-living industry is booming because it taps into the fantasy that we can all be self-sufficient until we die.

Assisted living is great only if you don't need too much assistance. Americans need to wake up to the reality that they will get dependent in their sunset years. Assisted living has a role to play for the fittest among the elderly, as was its original intent. But if it is to be a long-term solution for seniors who need substantial care, then it needs serious reform, including requirements for higher staffing levels and appropriate training.

ASSISTED living seems like the solution to everyone's worries about old age. It's built on the dream that we can grow old while being self-reliant, and live that way until we die, that all we need is a tiny bit of help, and that we would never want to be warehoused in a nursing home with round-the-clock caregivers. This is a powerful concept in a country built on independence and self-reliance.

The problem is that, for most of us, it's a lie. And we are all complicit in perpetuating that lie.

The assisted-living industry, for one, has a financial interest in sustaining a belief in this fantasy. Originally designed for people who were mostly independent, assisted-living facilities have nearly tripled in number in the past 20 years to about 30,000 today. It's a lucrative business: Investors in these facilities have enjoyed annual returns of nearly 15 per cent over the past five years - higher than for hotels, office, retail and apartments, said the National Investment Center for Seniors Housing & Care.

The children of seniors need to believe it, too. Many are working full time while also raising a family. Adding the care of elderly parents would be a crushing burden.

I know this fantasy well. When my parents, who were then in their 70s, were unable to take care of themselves, I bought an apartment in Brooklyn, New York big enough for them, my husband and our two young children. But my husband lost his job in the Great Recession, and we could no longer afford the mortgage.

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The only solution I could think of was to move. I took a job in India, where the dollar goes farther, so I could rent a big-enough apartment for us all and hire helpers to care for my parents and children while my husband and I worked.

Back then, I, too, dreamed about those assisted-living facilities. My parents seemed bored in our home, and had ballooning needs. As I struggled to support them, assisted living became a private dream for my own old age.

I am back in the United States now. My dad died in 2017, and my 83-year-old mother now lives in New York City with my sister. Would assisted living offer our mother better care and relieve the pressure on my sister, who works full time while raising a young daughter?

Sadly, I've discovered the answer is no.

The irony of assisted living is, it's great if you don't need too much assistance. If you don't, the social life, the spa-like facilities, activities and menus might make it the right choice. But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, these facilities aren't the answer.

Cristina Flores, a former home health care nurse who has a PhD in nursing health policy, lectures in gerontology at San Francisco State University and runs three small group homes for the elderly, said: "They put their money into the physical plant. It's gorgeous."

But when it comes to direct care, the facilities are often lacking. "The way they market everything is, it's all about autonomy and independence, which are important concepts," she said. Families and residents don't realise that these facilities are not designed to give more than minimal help and monitoring.

"People's defence against something horrible happening is 'Well, they have a right to be independent'. 'Yes, he did walk up the stairs with his walker and fall down and die, but he had a right to do that'. But that's a horrible defence; you don't just allow people to do unsafe things."

Most residents of assisted living need substantially more care than they are getting. Half of them in such facilities in the US are over the age of 85, the Centers for Disease Control reports; this demographic will nearly triple to 18 million by 2050, said the Census Bureau.

Part of the problem is a lack of regulation. Nursing homes are regulated, inspected and graded for quality to ensure that residents receive adequate care. The federal government does not license assisted-living facilities, and states set minimal rules. Nursing homes are required to have medical directors on staff who review patient medications regularly, but there is usually no such requirement in assisted living.

Not surprisingly, complaints against assisted-living facilities are mounting in courts around the country.

In June of last year, Claude Eugene Rogers, an 83-year-old retired Marine, suffered from heatstroke at an assisted-living facility near Sacramento. He died a few days later. A state investigation said he had been left on a patio in his wheelchair two hours or longer that morning, when local temperatures hit 33 deg C. The state in July moved to revoke the facility's licence to operate, but the facility is denying wrongdoing and fighting to keep its licence.

His family had chosen assisted living when his dementia grew more severe and his wife was no longer able to care for him at home. "We thought it was a nice place and the people there could provide great care and the other residents there would be friends for my dad," his son Jeffrey said.

Ruth Gamba, 96, fell thrice during her first month in a "memory-care unit" of an assisted-living facility in Fremont, California, her family said in a lawsuit against the facility. (Memory care units are supposed to provide closer monitoring and care of patients with dementia).

In her most recent fall, she broke her hip and her toes, her family said in the lawsuit. Her son Peter Gamba, a television editor in Los Angeles, said that he and his sister moved their mother into the facility because it promised round-the-clock monitoring.

Over 40 per cent of people in assisted living have some form of dementia. But assisted living and memory-care units often aren't the right place for such people. In most states, there's no requirement that these units be staffed with enough properly-trained people.

Assisted living has a role to play for the fittest among the elderly, as was its original intent. But if it is to be a long-term solution for seniors who need substantial care, then it needs serious reform, including requirements for higher staffing levels and substantial training.

This will raise prices, and assisted living already costs between about US$4,800 a month on average, and nearly US$6,500 if dementia care is needed, said the National Investment Center, a group studying housing for seniors.

Japan is a few decades ahead in grappling with care for its rapidly-ageing population. It has created a mandatory, national long-term-care insurance system, partly funded by the government and partly by payroll taxes and additional insurance premiums charged to people age 40 and older. It is a family-based, community-based system, where the most popular services are heavily subsidised home help and adult day care. Japanese families use nursing homes and assisted-living facilities, but the stress is on supporting the aged at home.

We need to let go of the ideal of being self-sufficient until death. Americans need to allow the reality of themselves as dependent in their old age to sink into their psyches and the nation's social policies. Unless they face up to the reality of the needs of their ageing population, the longevity they as a society have gained is going to be lived out miserably. NYTIMES

  • The writer, formerly a reporter for The New York Times, is a professor at the University of California Berkeley Graduate School of Journalism and the author of The Cure: How a Father raised $100 million and Bucked the Medical Establishment in a Quest to Save His Children

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