Alzheimer’s Caregivers: Isolated and Needing Help

A new study reveals most caregivers don’t get enough support from siblings

That’s one finding of a survey released today by the Alzheimer’s Association, which also revealed that 84 percent of the caregivers would like more support in their efforts.

“It’s a problem that’s only going to get worse,” said Ruth Drew, director of family and information services for the Alzheimer’s Association, in a statement. “As life expectancies get longer and the number of older Americans grows rapidly, so too will the number of individuals diagnosed with Alzheimer’s and family members affected.”

The survey was conducted to highlight Alzheimer’s & Brain Awareness Month in June. The Alzheimer’s Association commissioned the online survey of about 1,500 adults, which was conducted in April. Those responding fell into one of three groups: 250 were currently caring for someone with Alzheimer’s, 252 had previously done so and 1,000 had never given care.

Bringing Families Closer — Or Tearing Them Apart
More than a third of respondents said caregiving for a loved one made their sibling relationships stronger. Bonding was even more true for spouses; 39 percent of the primary caregivers said their relationship with a spouse or partner with Alzheimer’s was strengthened.

“Having the support of family is everything when you’re dealt a devastating diagnosis such as Alzheimer’s,” said Jeff Borghoff, 53, of Forked River, N.J., according to the Alzheimer’s Association. Borghoff was diagnosed with early-onset Alzheimer’s two years ago. “My wife, Kim, has been my rock as we navigate the challenges of Alzheimer’s.”

Half of all Alzheimer’s caregivers said they didn’t feel they could talk at work or socially about what they were going through.
But other Alzheimer’s caregivers expressed strain in their relationships — most frequently among siblings.

Sixty-one percent of siblings said they didn’t have enough support from sisters and brothers in their caregiving and that it strained their relationship. Among the caregivers who cited strain with siblings, 43 percent said their care was undervalued or underappreciated by the others.

Other Survey Findings
90 percent of Alzheimer’s caregivers said their No. 1 challenge was emotional stress. Eighty-one percent cited physical stress; 89 percent said “managing my time” was their biggest challenge.
43 percent of caregivers said they frequently feel guilty.
Two-thirds of caregivers who said the experience strengthened their relationship with their loved one said the caregiving “gave me a better perspective on life.”
Half of all caregivers said they didn’t feel they could talk at work or socially about what they were going through.
Asked how being a caregiver has strengthened their relationship with their spouse, 63 percent of respondents said it “reminded me why we love each other.”
70 percent of non-caregivers feared becoming a burden on others as they aged, yet only 20 percent said they had talked with their spouse or partner about future care needs.
Non-caregivers were 52 percent more likely to worry about burdening their spouse or partner than they were about dying.
Financial Costs Are Growing
In an earlier report released in March, the Alzheimer’s Association estimated the cost to families and taxpayers for the care of those with dementia, including Alzheimer’s, totaled $259 billion. That’s the highest expenditure to date. Payments by Medicare and Medicaid make up $175 billion of that total.

That figure does not include the cost of unpaid caregiving.

Out-of-pocket costs for Americans with Alzheimer’s or other types of dementia are nearly five times higher, on average, than for those without those conditions, according to the earlier report.

The earlier report also found that 59 percent of those caring for family members with Alzheimer’s or other dementias rated their emotional stress from caregiving as high or very high.

Finding Resources and Help
But there are ways for caregivers to get information and assistance.

The Alzheimer’s Association offers Information on financial and legal planning on its website, along with tips for long-distance caregiving and a community resource finder.

Alzheimer’s disease is the most common form of dementia. An estimated 5.5 million Americans live with Alzheimer’s or other type of dementia. There is no cure for the disease.

If you or a family member are dealing with Alzheimer’s disease, you can tell your story on social media using the hashtags #MyAlzStory and #ENDALZ.

What it Means to Be a Childfree Older Adult

Part of the TRANSFORMING LIFE AS WE AGE SPECIAL REPORT

(This article was originally published on Caring.com.)

As age-related health issues make it tougher to get around and stay independent, most older adults at some point will rely on a family member for help. Usually, one or more adult children will step in to provide or arrange for care when that day comes.

But what about those who never had children? These people  are referred to as “childless” or more recently, “childfree.” Who will care for them when they’re no longer able to care for themselves? Author and retirement planning expert, Sara Zeff Geber calls these older adults “solo agers,” and is working to raise awareness about the need for this cohort to plan for their future.

When it comes to ensuring that your end-of-life wishes are respected, good planning can make up for most of the gap left by the absence of adult children.

— Sara Zeff Geber, retirement planning expert

Geber says she often sees solo agers who seem to be in denial about the need to plan for their long-term living and care arrangements. “That led me to the realization that people needed some guidance for what to do for themselves when they don’t have that safety net,” says Geber.

But Geber has also noticed a growing awareness of the importance of long-term care planning among childfree older adults, especially as more of them provide care for their own aging parents. “People are spending time and resources and sometimes opening up their homes to their own aging parents, and they’re seeing the result of people living so much longer today,” Geber says.

Yet, with higher-than-ever life expectancies and a graying boomer population, an AARP study points to a growing gap between the number of older Americans who will need care and the available supply of family caregivers. According to the study, there were seven potential caregivers for every person 80 years and older in 2010, but that ratio is expected to drop to four to one by 2030, and to three to one by 2050.

Among boomers, the rate of solo agers is almost 20 percent. With more people now choosing to forgo parenthood altogether, the number of solo agers is only projected to rise, underscoring the need for a greater emphasis on planning for a future without adult children to call on.

Advantages of Being a ‘Solo Ager’

Despite the prevailing wisdom, there are plenty of advantages to being childfree as an older adult. Since childfree older adults never had to shoulder the considerable costs associated with childrearing — the U.S. Department of Agriculture’s latest estimates put the average cost at about $245,000 per child from birth to age 18, not including higher education costs — they’ve had decades to save more of their income for their later years.

“That money may have been growing since their 20s or 30s rather than being spent on raising children,” Geber says.

She points out that in many cases, these older adults have had more time and space to form strong bonds with friends and to build up a network of close, non-familial relationships. At the same time, many childfree Americans have also been able to develop close relationships with nieces and nephews or other younger relatives.

Once they hit retirement age, childfree older adults typically have more freedom of choice when it comes to where they’ll live. While many parents choose to live close to adult children and grandchildren in their later years, solo agers don’t have progeny to bind them to any one place. Nonetheless, plenty of older childfree adults opt to remain in the communities near long-established networks of friends and acquaintances, Geber notes.

Drawbacks for Childfree Americans

A clear disadvantage of being a childfree older adult is the absence of a built-in safety net to care for you when you need assistance. While not everyone will care for their parents later in life, most do step in to provide some form of help in the event of a serious health issue, Geber notes.

The absence of adult children is perhaps most acutely felt when it comes to end-of-life planning and during the end of life itself. While childfree older adults aren’t necessarily alone in their last days, weeks and months, they won’t have adult children to fall back on during that time.

“In the end, when people are dying, it’s usually those grown kids at their side,” Geber says. “That’s a disadvantage for solo agers that never goes away.”

Yet, when it comes to ensuring that your end-of-life wishes are respected, good planning can make up for most, if not all, of the gap left by the absence of adult children, says Geber.

Housing Options for Childfree Older Adults

Without the prospect of adult children to take them in or help them make decisions about housing in their later years, it’s especially crucial that childfree older adults make decisions early about where they want to live later in life.

The same older adult housing options available to older adults with children are often great choices for childfree older adults, too — from Continuing Care Retirement Communities (CCRCs), which allow residents to remain in the same community even after they require assistance with daily living routines, to assisted living communities, board and care facilities or nursing homes when higher levels of care are needed.

Another housing option that’s gaining popularity is co-housing, an arrangement in which a group of older adults or multi-generational residents live in a community of homes specifically designed for aging adults’ changing needs. Community members typically organize regularly scheduled shared activities, meals and events.

Meanwhile, others are opting to age in place with the help of in-home care. Growing numbers of those who choose to remain in their home are now joining what’s known as the village movement, a membership-based network that connects neighbors and provides services such as transportation, yard work and home maintenance. The aim of these villages is to help older adults stay in their homes for as long as possible.

Planning is Crucial

Advanced planning is key to ensure that long-term care and end-of-life preferences are honored, whether someone is a parent or not. But for those without adult children, this planning is even more crucial.

Part of that planning includes going to visit different types of older adult housing (CCRCs, board and care homes, assisted living facilities, etc.) to get an idea of what might someday be the best fit for you, Geber says. For those who plan to age in place, she advises turning to services like Caring.com (where I am a content producer) to learn about in-home care options.

With a clearer idea of the older adult care arrangement you want, the next key piece of the puzzle is having conversations with loved ones (this might include nieces, nephews or other younger relatives you’re close to, or it may mean close friends). Making sure your power of attorney and advance health directive documents are in order is also critical.

“The real key,” says Geber, “is to let people know what you want.”

Geber also advises childfree older adults to consider the services of a fiduciary, a financial professional you authorize to act on your behalf. “You can put in the hands of a professional fiduciary the kinds of things you would expect your adult children to do,” she notes.

“Helping Childfree Older Adults Plan for Their Future.” Next Avenue. N.p., 04 Apr. 2017. Web. 02 June 2017.

How to Avoid Crippling Falls After Age 50

Balance declines with age, but you can take steps now to avoid an injury

By Edmund O. Lawler

When he asks people over 50 if they can stand on one foot while maintaining their balance, most will confidently reply “yes,” says Michael E. Rogers, head of the Center for Physical Activity and Aging at Wichita State University. “But many will begin to sway and say, ‘Oh man, I used to be able to do that,’” says Rogers, an exercise physiologist. “Once you get to 45 or 50 and beyond, your balance begins to decline. Most people don’t even notice it.” A decline in balance, however, demands immediate attention because it can lead to a fall — the No. 1 cause of accidental deaths among older adults. More than a third of people 65 and over fall each year, according to the National Institutes of Health. Poor vision or hearing loss can also lead to a fall, as can trip hazards in the home like electrical cords, throw rugs, poor lighting, even pets.

Although falls increase with age, they are not an inevitable part of aging. A variety of steps can be taken to avoid falls, beginning with balance exercises, says Rogers. Unfortunately, most exercise programs — for both younger and older adults — emphasize strength and cardio training, but pay too little attention to balance, he says. ‘Standing Strong’ Through Strength and Balance Exercises. Balance training, however, is the basis of the center’s Standing Strong program to reduce the risk of falls among older adults. Offered in senior centers around the country, the program uses elastic resistance bands to improve strength in the lower extremities and foam pads that provide an unsteady surface and challenge the body to maintain balance. Participants have improved balance by 82 percent and decreased their fall rate from 58 percent to 16 percent, according to the center’s research.

Kathleen Cameron, senior director of the National Falls Prevention Resource Center, says the organization aims to get more balance improvement programs up and running around the country. The center is a unit of the Washington, D.C.-based National Council on Aging (NCOA).

Classes in Tai Chi and Yoga

“We want to do everything we can to educate people about the availability of these falls-prevention programs and get more community-based organizations to implement them,” Cameron says. Programs have become increasingly popular at Area Agencies on Aging, parks and recreation facilities, YMCAs and private health clubs. They include classes in tai chi and yoga that can help improve balance, gait and flexibility. Cameron wishes more older adults took the classes. “They may feel they are not functionally well enough to do the exercises. Yet many can be done from a seated position. People on walkers can do them,” Cameron says. “We have seen people progress from using a walker, to using a cane to not using anything at all because they have functionally improved. We have even seen people who began a falls- prevention program using a walker who end up teaching a program.”

Medication Side Effects and Other Risks

Medications are a leading cause of falls, says Cameron, a pharmacist. Medications or a combination of medications for such common conditions as allergies, anxiety, insomnia or depression can lower blood pressure to the point of dizziness or light-headedness or cause daytime sleepiness or confusion, leading to a fall. Reviewing medications on a regular basis with a doctor or pharmacist is critical. Poor vision or hearing loss can also lead to a fall, as can trip hazards in the home like electrical cords, throw rugs, poor lighting, even pets. The National Falls Prevention Resource Center along with the Centers for Disease Control and Prevention encourage older adults to talk to their physicians about balance and falls prevention. “Most physicians don’t talk to their patients about falls,” Cameron says. “They are not trained on falls and don’t see it as a serious problem.”

Some older adults have a fear of falling caused by poor balance or by a previous fall, Cameron says. The NCOA promotes “A Matter of Balance,” an evidence-based falls-prevention program shown to improve balance and reduce fear of falling. Contact your local Area Agency on Aging to see if it’s available.

Falling on the Dance Floor

Barbara Nicholson was 65 when she fell and injured a knee while dancing at a social event with her husband Mort. Nicholson, a retired social worker in Cincinnati, recalls that a nurse happened to be nearby and came to her aid, sparing her a trip to the emergency room. But the episode made her realize she was not as sure-footed as she once was. Now 73, Nicholson says she is more comfortable on her feet thanks to exercises that have improved her gait and flexibility. “I feel more balanced, confident and strong,” says Nicholson, who takes classes at Future Life Now, a health and learning center in Cincinnati that focuses on holistic health practices. She enrolled in a class titled “Balance, Posture and Power for 65+” taught by the center’s co-director, Cynthia Allen.

Allen said that besides nutrition, walking is the single most important thing we can do for our health. “Anything we can do to enliven ourselves around variety and movement will create better balance.”

Lawler, Edmund O. “How to Avoid Crippling Falls After Age 50.” Next Avenue. N.p., 19 May 2017. Web. 24 May 2017.

How Do We Balance Autonomy and Risk for Older Adults?

Part of the TRANSFORMING LIFE AS WE AGE SPECIAL REPORT

Georgia Dyson of St. Paul, Minn., died in March after suffering the gradual shrinkage of her world. Through it all, “she always relished her independence,” her daughter Christine Dyson Dahn said.

Over Dyson’s 84 years, her spine twisted in two directions from degenerative scoliosis. She had cataracts, high blood pressure and congestive heart failure. She endured a double bypass heart operation, a mitral valve repair, a pacemaker, two hip replacements, a catheter, a hearing aid, dentures and, as you can imagine, periodic depression.

Despite all of that — and despite some misgivings about Dyson’s safety — family members did whatever they could to support her, insisting at each crossroads that she be allowed to get back to her routines.

“We wanted to respect that fire in her, but we worried about her,” Dahn said. “What if she went out in her wheelchair and got hit by a car?”

The question is not, ‘What do I let her do?,’ but rather, ‘How do I support her?’

— Linda Crandall, Pioneer Network.

Balancing risk and autonomy is one of the toughest things that caregivers do, whether they are professionals or family members. It’s especially difficult when the people they care for cannot advocate for themselves.

Quality of Care or Quality of Life?

Each time Dyson’s health faltered over the years, it whittled away at her autonomy. When she reluctantly moved into assisted living for the first time in 2004, she insisted on cooking her own meals. Eventually facility management put an end to that because she was spilling so much food on the carpet and they worried she would hurt herself.

Yet Dyson never gave up trying. When her family packed her belongings in 2010 for a move to a nursing home, they discovered a corncob in a coffee pot. She had tried to cook the corn that way after losing her kitchen privileges.

Saskia Sivananthan, a consultant with the World Health Organization’s Global Dementia Team, knows what it’s like to suffer the indignities of nursing home living. As a young researcher in 2014, she checked herself into two different nursing homes in Ontario, Canada, for her work on a doctoral thesis. Staff members had instructions to treat her as they would any other resident, following all the standard policies and procedures. What Sivananthan found is that there’s a big difference between quality of care — the focus of many nursing homes — and quality of life.

The realization struck her at breakfast one day. She missed the scheduled mealtime and had to eat in the lounge as a staff member stood by monitoring her every bite lest she choke. The standard protocol made no sense in her case and she was uncomfortable being observed so closely.

“Most nursing homes [in North America] have lunch, dinner and breakfast at a certain time,” said Sivananthan. “You would never do that in your own home.”

Moving Toward Person-Centered Care

Nursing homes in the U.S. and in Canada, where Sivananthan lives, evolved from a medical model, she explained. They document their residents’ well-being with standard health measures. By contrast, she noted, quality of life measures are “notoriously difficult” to assess.

In the United Kingdom and some European nations like Denmark and the Netherlands, the focus is more on personal autonomy, Sivananthan said. The Centers for Medicare and Medicaid Services (CMS) have been moving in that direction as well, stressing what the health care industry calls person-centered care. It boils down to assessing an individual’s needs and desires and incorporating them into a care plan. The receivers of care must be included whenever possible in decision making about their care, even into the stages of moderate dementia.

Difficult behaviors often are a form of communication, Sivananthan said, so caregivers need to assess what triggers the behaviors and then consider whether the environment can be managed, rather than restricting people from what they want to do. She recalled the case of a man who wandered, a common problem for people with dementia. The nursing home staff discovered he’d been a painter. So they set up a room where he could paint whenever he liked, and it satisfied his need for a place to go.

‘There’s Nothing Wrong with Wanting to Be on the Floor’

Linda Irgens of Maplewood, Minn., ran into a similar situation with her dad, Richard Irgens, recently. He’s an 87-year-old former Marine, a retired commercial airline pilot and was an avid hunter and fisherman. But health problems including vascular dementia forced “Papa Dick’s” move to a nearby nursing home.The staff there called Linda to say her father was refusing to leave the main floor of the nursing home and return to the locked memory-care unit. “He had his hat and coat and his keys, and he was determined to get out of there,” she said. He told her, “They won’t let me out of this place!’” She asked the staff to respect his needs and let him go out on the patio.

“He’s an outdoorsman and he’s always needed some access to fresh air and nature,” Linda said. “I told them I wanted him to have every risk possible, because that’s an indicator of quality of life.”

She added: “He’s been thrown out of planes. It’s OK, you don’t baby a lieutenant colonel, for God’s sake.”

Another time, the staff found her dad on the floor of his apartment. Assuming that he had fallen getting in or out of bed, they debated whether to remove the bed frame to lower the mattress. Linda balked. Her dad had told her that he just wanted to lie on the floor. “And there’s nothing wrong with wanting to be on the floor,” she said.

Can We Accept Risks?

Chris Perna, president and CEO of the Eden Alternative, an international nonprofit that provides training and advocacy to improve quality of life for people who need help with daily living skills, said professional caregivers have to assess each person individually in making care plans and “can’t just make unilateral decisions” for, or about, people. Perna’s New York–based organization teaches the principles of person-centered care.

He says good things can happen when older people are allowed to live more autonomous lives, “but it takes guts.” Often, it presents risks not only for care recipients, but for caregivers, who may be blamed when things go awry.

That fear can’t be allowed to take over, said Linda Crandall, executive director of the Pioneer Network, a nationwide coalition that also offers training and support to help elder-care communities shift from an institutional care model to a person-centered one. The New York–based Pioneer Network emphasizes autonomy for those receiving care. “Taking risks is a normal part of life,” Crandall said. “Care partners,” as she calls caregivers, must get to know the individual and understand how that person wants to live, realizing that it might change over time. The goal is to help someone be both happy and safe.

“The question is not, ‘What do I let her do?,’ but rather, ‘How do I support her?’” Crandall added.

Caregivers must use the least restrictive means possible when limiting someone’s activities. A review of the literature on caregiver liability indicates that a carefully constructed care plan can reduce liability if things do go awry. The plan should address the risk tolerance expressed by the person getting care, and by any of that person’s designated surrogates. The care plan won’t protect caregivers who are negligent, however, or professionals who provide substandard care. Wanton disregard for a vulnerable adult’s safety also could lead to prosecution under state elder abuse laws.

‘It’s Their Life’

The right balance is not easy to find, said Rev. Katherine Engel of St. Paul, Minn. She cared for her mother, Frances Wachter, who died this year at age 81 after living with moderate cognitive impairment and other health issues. At her mother’s insistence, Engel moved Wachter out of assisted living and into an apartment of her own, despite the fact that she fell sometimes and broke things, including her pelvis once.

“There’s no dignity in falling and laying down on the sidewalk,” Engel said. And yet, “it’s their karma. It’s their life.”

Stacy Waskosky, of Maplewood, Minn., said her family tried for decades to care for her paternal grandmother, Annette Savage of Indianapolis, who had early-onset dementia. An increasing regimen of medications seemed to be making things worse. Savage grew angrier and kept running away from her assisted living facility, resulting in even more medications. She died in 2008 at age 92.

Reflecting back, Waskosky said that “everything was done in such small steps that you don’t realize until the very last minute that you’re limiting their freedoms.” The routines the facility set up for Savage were meant to be comforting and slow her decline.

“But when it’s not you that defines those rituals and routines, it’s devastating,” Waskosky said.

Browning, D. (2017, May 01). How to Balance Autonomy and Risk for Older Adults? Retrieved May 19, 2017, from http://www.nextavenue.org/older-adults-balance-autonomy-risk/

The Value of Sitting With Your Pain

If pain is inevitable, how can suffering be optional?

She thought this chapter of her past was closed. So, when an ancient, painful relationship recently roared back into my friend’s life, stirring up old and ugly feelings, she began to worry she was coming unglued.

“I swore I’d never be here again,” she told me. “I know I should be able to handle this better.” In search of solace, she reached out to several friends. Their loving advice was stern: Don’t let this guy get into your head. Put him behind. Move on.

My own counsel was different. “Stop fighting your pain and acknowledge it,” I said. “You’ve earned this pain. Give it its due.”

The suggestion comes not only from my respective straining as a life coach and a crisis counselor, both of which emphasize the importance of “validating” people’s feelings. More deeply, it draws on my own experience with grief after losing four loved ones in rapid succession. While grappling with that pile-on of losses, I discovered that something a therapist had told me years earlier was true: my pain would be more tolerable if I could “just sit with it.”

A Four-Word Prescription for Depression

When I first heard that four-word prescription, I was in my late thirties and battling a crushing depression. At the time, a 24/7 loop of misery was running through my head that disrupted my sleep, appetite and ability to focus on anything but my pain. As I twisted myself into ever-deepening knots of despair, an inner voice chided, “You should be able to handle this better.”

During the two years that Joe had bounced in and out of hospitals, we had learned something useful: Stay in the present. Don’t get ahead of yourself.

That self-judgment only made things worse. Now, I was not just hurting — I was ramping up my distress by heaping on self-blame for not dealing with my anguish more maturely, more calmly, more effectively.

Each time my therapist would instruct, “Just sit with it,” I would plead, “How?” Her Rx made no sense to me. Why would anyone want to soak in pain rather than try to escape it?

Fast-forward 15 years to June 2009. After a battle with leukemia, my husband of 24 years, the love of my life for 28, had just died. The word “devastated” doesn’t begin to cover what I was feeling. But during the two years that Joe had bounced in and out of hospitals, he and I had learned something useful: Stay in the present. Don’t get ahead of yourself. One minute at a time. One hour. One day.

To preserve my sanity, I worked hard applying that lesson to my newly widowed existence. I told myself that our 15-year-old daughter had just lost her father; she didn’t need to lose her mother, too. I suspect the realization that my child’s well-being would be further eroded if I plunged into depression buttressed my resolve.

When Pain Is Necessary

What I know for certain is this: For the first time in my life, I didn’t try to do an end-run around my pain. Instead, I steered right into it. All of it. My loss of Joe. My loss of Joe and me. My daughter’s loss of her father. Our loss of the three of us. My loss of the life that I treasured, loved and had assumed would inform my days for several decades to come.

Unlike most of the anguish that had blown through my life, bringing with it a tailwind of complicating questions (Had I brought this on myself? Shouldn’t I be handling it better? Was I overreacting?), this sorrow required no self-justification, explanation or apology. To me, the pain seemed not only appropriate and understandable; it seemed necessary.

Soon, through no conscious effort, my most intense moments of grief settled into a pattern. Once a day, usually around dusk — the time of day when Joe and I used to reconnect after our respective workdays — I would feel a huge wave of sorrow rising up in me.

If other people were around, I pushed it aside, telling myself, “Not now.” I had no desire to share these overpowering waves of grief. This was for and about Joe; for and about me; for and about us. Where the pain came from and what the feelings of loss involved were too personal, too special, too impossible to explain.

But if I was alone, I went into my bedroom, settled on the rug — and surrendered. Without resistance, I let my grief take full hold, tossing me where it might. I sobbed, I keened, I pounded the floor with my fists. I choked on the mucus clogging my nose and throat, I emptied boxes of Kleenex, I whispered over and over, “Where are you, Joe? Where are you?”

Suffering Is Optional

Though I never sought to disrupt or shorten these daily crying jags, they rarely lasted long. After about 20 minutes, I would simply stop, resurface and resume my day. By month four, I trusted that I could tolerate these soul-wrenching moments. “I disappear through a hole at the center of the earth,” I wrote in my journal. “As much as those moments hurt, I know I will push back up and be okay.”

During those months, and again the following year after my sister and mother died within three weeks of each other, I heard a lot of, “I don’t know how you’re able to handle all of this.” At the time, I didn’t know either.

I think I do now.

An adage, popular in Buddhist circles, states, “Pain is inevitable; suffering is optional.” When I first encountered those words four years after Joe’s death, I sensed there was wisdom to be mined, but couldn’t get a handle on it. Then, I happened on Byron Katie’s book Loving What Is. We suffer, she wrote, when we “have a thought that argues with reality.”

With that, the meaning clarified for me, not only cerebrally, but at a gut level. I’d been able to tolerate the hollowing grief of new loss because I didn’t argue with the reality that I was confronting. I didn’t tell myself that Joe, whose parents lived well into their 90s, shouldn’t have gotten sick. (Reality: he did.) I didn’t tell myself that a 66-year-old man who’d been religious about exercise and a healthy diet shouldn’t have died. (Reality: he did.) I didn’t tell myself that our teenage daughter shouldn’t have lost her loving father. (Reality: she did.) I didn’t tell myself that a 53-year-old woman shouldn’t be widowed. (Reality: I was.)

Instead, I just sat with it. All of it.

And that, I believe, helped me tolerate my agony. To live with it one minute, one hour, one day at a time — until, gradually, it shifted from the defining essence of my days to the quieter sorrow that I carry to this day and imagine I will carry to my grave.

To my friend who is in so much pain … to any of you who currently feel like you may never see sunlight again … I offer the gift I gave myself: Allow yourself the kindness of giving your pain its due. Don’t try to argue it away. Acknowledge it. Accept it. Just sit with it.

 

“The Value of Sitting With Your Pain.” Next Avenue. N.p., 18 Apr. 2017. Web. 04 May 2017.

4 Common Symptoms That May Not Be Just ‘Old Age’

These concerns are ignored by many but should get your attention

(This article ran previously on Kaiser Health News.)

When Dr. Christopher Callahan examines older patients, he often hears a similar refrain.

“I’m tired, doctor. It’s hard to get up and about. I’ve been feeling kind of down, but I know I’m getting old and I just have to live with it.”

This fatalistic stance relies on widely held, but mistaken assumptions about what constitutes “normal aging.”

In fact, fatigue, weakness and depression, among several other common concerns, aren’t to-be-expected consequences of growing older, said Callahan, director of the Center for Aging Research at Indiana University’s School of Medicine.

Instead, they’re a signal that something is wrong and a medical evaluation is in order.

Aging Changes Should Be Gradual

“People have a perception, promulgated by our culture, that aging equals decline,” said Dr. Jeanne Wei, a geriatrician who directs the Donald W. Reynolds Institute on Aging at the University of Arkansas for Medical Sciences. “That’s just wrong.” Many older adults remain in good health for a long time and “we’re lucky to live in an age when many remedies are available,” Wei said.

If untreated, sarcopenia will affect your balance, mobility and stamina and raise the risk of falling, becoming frail and losing independence.

Of course, peoples’ bodies do change as they get on in years. But this is a gradual process. If you suddenly find your thinking is cloudy and your memory unreliable, if you’re overcome by dizziness and your balance is out of whack, if you find yourself tossing and turning at night and running urgently to the bathroom, don’t chalk it up to normal aging. Go see your physician.

The earlier you identify and deal with these problems, the better. Here are four common concerns that should spark attention — only a partial list of issues that can arise:

1. Fatigue. You have no energy. You’re tired all the time.

Don’t underestimate the impact: Chronically weary older adults are at risk of losing their independence and becoming socially isolated.

Nearly one-third of adults 51 and older experience fatigue, according to a 2010 study in the Journal of the American Geriatrics Society.  (Other estimates are lower.) There are plenty of potential culprits. Medications for blood pressure, sleep problems, pain and gastrointestinal reflux can induce fatigue, as can infections, conditions such as arthritis, an underactive thyroid, poor nutrition and alcohol use.

All can be addressed, doctors say. Perhaps most important is ensuring that older adults remain physically active and don’t become sedentary.

“If someone comes into my office walking at a snail’s pace and tells me ‘I’m old; I’m just slowing down,’ I’m like ‘No, that isn’t right,” said Dr. Lee Ann Lindquist, a professor of geriatrics at Northwestern University’s Feinberg School of Medicine in Chicago. “You need to start moving around more, get physical therapy or occupational therapy and push yourself to do just a little bit more every day.”

2. Appetite loss. You don’t feel like eating and you’ve been losing weight.

This puts you at risk of developing nutritional deficiencies and frailty and raises the prospect of an earlier-than-expected death. Between 15 and 30 percent of older adults are believed to have what’s known as the “anorexia of aging.”

Physical changes associated with aging — notably a reduced sense of vision, taste and smell, which make food attractive — can contribute. So can other conditions: decreased saliva production (a medication-induced problem that affects about one-third of older adults); constipation (affecting up to 40 percent of seniors); depression; social isolation (people don’t like to eat alone); dental problems; illnesses and infections and medications (which can cause nausea or reduced taste and smell).

If you had a pretty good appetite before and that changed, pay attention, said Dr. Lucy Guerra, director of general internal medicine at the University of South Florida.

Treating dental problems and other conditions, adding spices to food, adjusting medications and sharing meals with others can all make a difference.

3. Depression. You’re sad, apathetic and irritable for weeks or months at a time.

Depression in later life has profound consequences, compounding the effects of chronic illnesses such as heart disease, leading to disability, affecting cognition and, in extreme cases, resulting in suicide.

A half century ago, it was believed “melancholia” was common in later life and that older adults naturally withdrew from the world as they understood their days were limited, Callahan explained. Now it’s known that this isn’t so. Researchers have shown that older adults tend to be happier than other age groups: only 15 percent have major depression or minor variants.

Late-life depression is typically associated with a serious illness such as diabetes, cancer, arthritis or stroke; deteriorating hearing or vision and life changes such as retirement or the loss of a spouse. While grief is normal, sadness that doesn’t go away and that’s accompanied by apathy, withdrawal from social activities, disturbed sleep and self-neglect is not, Callahan said.

With treatments such as cognitive behavioral therapy and anti-depressants, 50 to 80 percent of older adults can expect to recover.

4. Weakness. You can’t rise easily from a chair, screw the top off a jar or lift a can from the pantry shelf.

You may have sarcopenia — a notable loss of muscle mass and strength that affects about 10 percent of adults over the age of 60. If untreated, sarcopenia will affect your balance, mobility and stamina and raise the risk of falling, becoming frail and losing independence.

Age-related muscle atrophy, which begins when people reach their 40s and accelerates when they’re in their 70s, is part of the problem. Muscle strength declines even more rapidly — slipping about 15 percent per decade, starting at around 50.

The solution: exercise, including resistance and strength training exercises and good nutrition, including getting adequate amounts of protein. Other causes of weakness can include inflammation, hormonal changes, infections and problems with the nervous system.

Watch for sudden changes. “If you’re not as strong as you were yesterday, that’s not right,” Wei said. Also, watch for weakness only on one side, especially if it’s accompanied by speech or vision changes.

Taking steps to address weakness doesn’t mean you’ll have the same strength and endurance as when you were in your 20s or 30s. But it may mean doctors catch a serious or preventable problem early on and forestall further decline.

“4 Common Symptoms That May Not Be Just ‘Old Age'” Next Avenue. N.p., 21 Dec. 2016. Web. 28 Apr. 2017.

Forgetfulness: What’s Normal, What’s Not?

Dear Savvy Senior,

At age 76, my husband has become forgetful lately and is worried he may have Alzheimer’s. What resources can you recommend to help us get a grip on this?

Concerned Wife

Dear Concerned,

Many seniors worry about memory lapses as they get older fearing it may be the first signs of Alzheimer’s disease or some other type of dementia. To get some insight on the seriousness of your husband’s problem, here are some resources you can turn to for help.

Warning Signs

As we grow older, some memory difficulties – such as forgetting names or misplacing items from time to time – are associated with normal aging. But the symptoms of dementia are much more than simple memory lapses.

While symptoms can vary greatly, people with dementia may have problems with short-term memory, keeping track of a purse or wallet, paying bills, planning and preparing meals, remembering appointments or traveling out of the neighborhood.

To help you and your husband recognize the difference between typical age-related memory loss and a more serious problem, the Alzheimer’s Association provides a list of 10 warning signs that you can assess at 10signs.org.

They also provide information including the signs and symptoms on the other conditions that can cause dementia like vascular dementia, Lewy body dementia, frontotemporal dementia, Parkinson’s disease, Huntington’s disease, chronic traumatic encephalopathy and others – see ALZ.org/dementia.

Memory Screening

Another good place to help you get a handle on your husband’s memory problems is through the National Memory Screening Program, which offers free memory screenings throughout National Memory Screening Month in November.

Sponsored by the Alzheimer’s Foundation of America, this free service provides a confidential, face-to-face memory screening that takes about 10 minutes to complete and consists of questions and/or tasks to evaluate his memory status.

Screenings are given by doctors, nurse practitioners, psychologists, social workers or other healthcare professionals in thousands of sites across the country. It’s also important to know that this screening is not a diagnosis. Instead, its goal is to detect problems and refer individuals with these problems for further evaluation.

If you can’t find a screening site in your area, make an appointment with his primary care doctor to get a cognitive checkup. This is covered 100 percent by Medicare as part of their annual wellness visit. If his doctor suspects any problems, he may give him the Memory Impairment Screen, the General Practitioner Assessment of Cognition, or the Mini Cog. Each test can be given in less then five minutes.

Depending on his score, his doctor may order follow-up tests or simply keep it on file so he can see if there are any changes down the road. Or, he may then refer him to a geriatrician or neurologist who specializes in diagnosing and treating memory loss or Alzheimer’s disease.

Keep in mind that even if your husband is experiencing some memory problems, it doesn’t necessarily mean he has dementia. Many memory problems are brought on by other factors like stress, depression, thyroid disease, side effects of medications, sleep disorders, vitamin deficiencies and other medical conditions. And by treating these conditions he can reduce or eliminate the problem.

Dementia patients bloom through arts therapy

Something happened when Brant Kingman handed his mother a colored pencil.

In the three years since Polly Penney, 87, was diagnosed with dementia, she had lost much of her short-term memory and some of her language. So she would ask Kingman the same question again, then again. Out of “absolute out-of-my-mind frustration,” Kingman, an artist, decided to try drawing together.

Penney grew quiet. Her shoulders loosened. “It silenced her so we could sit together,” Kingman said. “And then every now and then, lucid thoughts would appear to her.”

Almost unintentionally, he tapped into a national trend: using art as therapy for people with Alzheimer’s disease and other forms of dementia. There are now art workshops for Alzheimer’s patients. Painting, poetry and pottery classes are tailored to dementia’s tics. Giving Voice Chorus, a pair of Twin Cities choirs for people with dementia, has created a tool kit so other cities might start their own.

Neurological disorders that attack memory and verbal communication can spare creativity, some research shows. In special cases, Alzheimer’s and frontotemporal dementia can even kick artistic ability into overdrive, said Dr. Bruce Miller, a neurologist at the University of California, San Francisco. If the disease attacks circuits on one side of the brain, he said, it might spark an interest or ability in the other side.

“It’s all about the geography,” said Miller, director of the university’s Memory and Aging Center. “It’s where the disease hits that is a determinant of what is lost — but sometimes what is gained.”

Partly because it offers another way to communicate, art therapy is “going to become, more and more, a regular part of how we look after people,” he said.

Fighting frustration

For Kingman and his mother, the art was accidental. Kingman, 63, has been a full-time artist for decades, painting and casting bronze sculptures in Minneapolis studios perhaps best known for the art parties he hosted in them. Penney worked in the world of art for many years — including as vice president of development at the Minneapolis College of Art and Design — but didn’t create it, Kingman said.

Before dementia struck, Kingman would often stop by Penney’s nearby house for a cup of coffee in the morning or a glass of wine at night. But as Penney’s thoughts circled, talking grew difficult. Kingman found himself cutting visits short.

“I’d have the best intentions and then just flee,” he said. “And then I’d sit in my car and be like, ugh. This is awful.”

Making art turned into a new kind of conversation. Kingman and his mother sat at her dining room table together, sketching their versions of works by Pablo Picasso, Henri Matisse, Paul Klee. Later, inspired by those lucid moments, the pair began creating angels.

“In interactions with people, which are so often word-based, it can go quickly to frustration,” Kingman said. “Art sort of gives you a bridge to get beyond that.”

Their pieces hang side-by-side on the walls of Jungle Red Salon Spa Gallery in Minneapolis, in an exhibition that ends Wednesday.

Language of images

When Rachel Moritz teaches a poetry class to older adults, many of them with memory loss, she often begins with music or a call-and-response. For one session, focused on hands, she passed around props: Silk scarves, a rolling pin, a garden spade. Then the group wrote a poem together.

Moritz is a poet and instructor with Artful Aging, a program run by the St. Paul nonprofit Compas. Compas works with artists to teach classes for older adults — watercolor, mosaics and weaving among them. The goal is to reach seniors in new ways, lessening depression and isolation, said Marian Santucci, the program’s manager.

In recent years, that work has been “gaining momentum” in care centers and senior living complexes, Santucci added.

Through training and teaching, Moritz has learned how to communicate with seniors with dementia, asking broad questions based on feelings. “What have your hands loved to do?” Then she’s patient. Participants mentioned gardening, baking, cradling a baby. One woman told a story of warming her hands in her mother’s thick brown hair.

“With memory loss, you get snippets, and I think what’s great about poetry is that really, poetry is the language of images,” Moritz said. “So if you’ve lost a lot of your language ability, you may still have a color, or an event, or a couple words.

“Using poetry with this population … can get people talking in ways that other kinds of conversations don’t.”

The artist remains

Jane Chang’s art pops up in every corner of her Bloomington home. Hanging in the dining room is one of her “paper quilts,” its marbled paper sewn and folded into a pattern inspired by a kimono.

Chang, 64, was diagnosed with mild cognitive impairment in 2013 not long after moving to Minnesota. She and her husband, Hsien-Hsin Chang, took her doctor’s advice, connecting with the Alzheimer’s Association, attending a two-week program at the Mayo Clinic and exercising several times a week.

“We’re doing all the things we’re supposed to,” Jane said.

That includes art. “They encourage you to be creative,” she said. For her, that was easy: Chang has crafted since she was young, falling in love with handmade paper along the way.

Chang is quick to laugh about her memory lapses. Her verbal skills remain strong. Complex projects are trickier these days, though. Chang struggled with a bookmaking workshop, unable to keep up with the instructor.

But her artwork looks much like it always has, she said. She continues making paper-covered boxes and bookmarks with scraps of paper she has filed away in her basement studio, selling them at a recent church craft fair.

“All those skills I need to complete what I do are still there,” Chang said. “That creative part of me is still there.”

“In art, I think there are metaphors of the truth, of what’s actually going on,” Kingman said. He touched the loops Penney drew. “These are like brain loops, her brain going around and around.”

(Minneapolis), Jenna Ross Star Tribune. “Dementia patients bloom through arts therapy.” The Columbian. N.p., 16 Jan. 2017. Web. 03 Apr. 2017.

Seven Stages of Dementia | Symptoms & Progression

Health professionals sometimes discuss dementia in “stages,” which refers to how far a person’s dementia has progressed. Defining a person’s disease stage helps physicians determine the best treatment approach and aids communication between health providers and caregivers. Sometimes the stage is simply referred to as “early stage”, “middle stage” or “late-stage” dementia, but often a more exact stage is assigned, based on a person’s symptoms.

One of the most commonly used staging scales is the Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS), which divides the disease process into seven stages based on the amount of cognitive decline. The GDS is most relevant for people who have Alzheimer’s disease, since some other types of dementia (i.e. frontotemporal dementia) do not always include memory loss.

Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (also known as the Reisberg Scale)

Diagnosis Stage Signs and Symptoms
No Dementia Stage 1:
No Cognitive Decline

In this stage the person functions normally, has no memory loss, and is mentally healthy. People with NO dementia would be considered to be in Stage 1.
No Dementia Stage 2:
Very Mild Cognitive Decline
This stage is used to describe normal forgetfulness associated with aging; for example, forgetfulness of names and where familiar objects were left. Symptoms are not evident to loved ones or the physician.
No Dementia Stage 3:
Mild Cognitive Decline
This stage includes increased forgetfulness, slight difficulty concentrating, decreased work performance. People may get lost more often or have difficulty finding the right words. At this stage, a person’s loved ones will begin to notice a cognitive decline. Average duration: 7 years before onset of dementia
Early-stage Stage 4:
Moderate Cognitive Decline
This stage includes difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam. Average duration: 2 years
Mid-Stage Stage 5:
Moderately Severe Cognitive Decline
People in this stage have major memory deficiencies and need some assistance to complete their daily activities (dressing, bathing, preparing meals). Memory loss is more prominent and may include major relevant aspects of current lives; for example, people may not remember their address or phone number and may not know the time or day or where they are. Average duration: 1.5 years
Mid-Stage Stage 6:
Severe Cognitive Decline (Middle Dementia)
People in Stage 6 require extensive assistance to carry out daily activities. They start to forget names of close family members and have little memory of recent events. Many people can remember only some details of earlier life. They also have difficulty counting down from 10 and finishing tasks. Incontinence (loss of bladder or bowel control) is a problem in this stage. Ability to speak declines. Personality changes, such as delusions (believing something to be true that is not), compulsions (repeating a simple behavior, such as cleaning), or anxiety and agitation may occur. Average duration: 2.5 years
Late-Stage

 

Stage 7:
Very Severe Cognitive Decline (Late Dementia)
People in this stage have essentially no ability to speak or communicate. They require assistance with most activities (e.g., using the toilet, eating). They often lose psychomotor skills, for example, the ability to walk. Average duration: 2.5 years

 

(Reisberg, et al., 1982; DeLeon and Reisberg, 1999)

Two other scales that are sometimes used to describe the progression of dementia are:

  • Functional Assessment Staging (FAST): a seven stage system based on level of functioning and daily activities. View the FAST

    Functional Assessment Staging (FAST)

    Another staging method for dementia, the Functional Assessment Staging (FAST), focuses more on an individual’s level of functioning and activities of daily living versus cognitive decline. Note: A person may be at a different stage cognitively (GDS stage) and functionally (FAST stage).

Functional Assessment Staging (FAST)
Stage 1 — Normal adult
No functional decline
Stage 2 — Normal older adult
Personal awareness of some functional decline.
Stage 3 — Early Alzheimer’s disease
Noticeable deficits in demanding job situations.
Stage 4 — Mild Alzheimer’s
Requires assistance in complicated tasks such as handling finances, planning parties, etc.
Stage 5 — Moderate Alzheimer’s
Requires assistance in choosing proper attire.
Stage 6 — Moderately severe Alzheimer’s
Requires assistance dressing, bathing, and toileting. Experiences urinary and fecal incontinence.
Stage 7 — Severe Alzheimer’s

Speech ability declines to about a half-dozen intelligible words. Progressive loss of abilities to walk, sit up, smile, and hold head up. (Reisberg, et al., 1988)

The Clinical Dementia Rating (CDR) scale: a five-stage system based on cognitive (thinking) abilities and the individual’s ability to function. Commonly used in dementia research. View the CDR Scale

Clinical Dementia Rating (CDR)

This is the most widely used staging system in dementia research. Here, the person with suspected dementia is evaluated by a health professional in six areas: memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care and one of five possible stages is assigned.

 

Clinical Dementia Rating (CDR) Scale
CDR-0 — No dementia
CDR-0.5 — Mild
Memory problems are slight but consistent; some difficulties with time and problem solving; daily life slightly impaired
CDR-1 Mild
Memory loss moderate, especially for recent events, and interferes with daily activities. Moderate difficulty with solving problems; cannot function independently at community affairs; difficulty with daily activities and hobbies, especially complex ones.
CDR-2 — Moderate
More profound memory loss, only retaining highly learned material; disoriented with respect to time and place; lacking good judgment and difficulty handling problems; little or no independent function at home; can only do simple chores and has few interests.
CDR-3 — Severe
Severe memory loss; not oriented with respect to time or place; no judgment or problem solving abilities; cannot participate in community affairs outside the home; requires help with all tasks of daily living and requires help with most personal care. Often incontinent.

View References

de Leon MJ and Reisberg B. An Atlas of Alzheimer’s Disease. The Encyclopedia of Visual Medicine Series. Parthenon Publishing, Carnforth, 1999. Available at: http://www.alzinfo.org/clinical-stages-of-alzheimers

Reisberg B et al. The Global Deterioration Scale for Assessment of Primary Degenerative Dementia. American Journal of Psychiatry. 1982;139(9):1136-1139.

“Seven Stages of Dementia | Symptoms & Progression.” Dementia Care Central. N.p., n.d. Web. 24 Mar. 2017.

 

Delirium: A Surprising Side Effect of Hospital Stays

(This article originally appeared on KaiserHealthNews.org.)

When B. Paul Turpin was admitted to a Tennessee hospital in January last year, the biggest concern was whether the 69-year-old endocrinologist would survive. But as he battled a life-threatening infection, Turpin developed terrifying hallucinations, including one in which he was performing on a stage soaked with blood. Doctors tried to quell his delusions with increasingly large doses of sedatives, which only made him more disoriented.

Nearly five months later, Turpin’s infection has been routed, but his life is upended. Delirious and too weak to go home after his hospital discharge, he spent months in a rehab center, where he fell twice, once hitting his head. Until recently he did not remember where he lived and believed he had been in a car wreck. “I tell him it’s more like a train wreck,” said his wife, Marylou Turpin.

“They kept telling me in the hospital, ‘Everybody does this,’ and that his confusion would disappear,” she said. Instead, her once astute husband has had great difficulty “getting past the scramble.”

Turpin’s experience illustrates the consequences of delirium, a sudden disruption of consciousness and cognition marked by vivid hallucinations, delusions and an inability to focus that affects 7 million hospitalized Americans annually. The disorder can occur at any age — it has been seen in preschoolers — but disproportionately affects people older than 65 and is often misdiagnosed as dementia.

While delirium and dementia can coexist, they are distinctly different illnesses. Dementia develops gradually and worsens progressively, while delirium occurs suddenly and typically fluctuates during the course of a day. Some patients with delirium are agitated and combative, while others are lethargic and inattentive.

Delirium Triggers

Patients treated in intensive care units who are heavily sedated and on ventilators are particularly likely to become delirious; some studies place the rate as high as 85 percent. But the condition is common among patients recovering from surgery and in those with something as easily treated as a urinary tract infection. Regardless of its cause, delirium can persist for months after discharge.

They kept telling me in the hospital, ‘Everybody does this,’ and that his [my husband’s] confusion would disappear.

— Marylou Turpin

Federal health authorities, who are seeking ways to reduce hospital-acquired complications, are pondering what actions to take to reduce the incidence of delirium, which is not among the complications for which Medicare withholds payment or for which it penalizes hospitals. Delirium is estimated to cost more than $143 billion annually, mostly in longer hospital stays and follow-up care in nursing homes.

“Delirium is very underrecognized and underdiagnosed,” said geriatrician Sharon Inouye, a professor of medicine at Harvard Medical School. As a young doctor in the 1980s, Inouye pioneered efforts to diagnose and prevent the condition, which was then called “ICU psychosis.” Its underlying physiological cause remains a mystery.

“Physicians and nurses often don’t know about it,” added Inouye, who directs the Aging Brain Center at Hebrew SeniorLife, a Harvard affiliate that provides elder care and conducts gerontology research. Preventing delirium is crucial, she said, because “there still aren’t good treatments for it once it occurs.”

Researchers estimate that about 40 percent of delirium cases are preventable. Many cases are triggered by the care patients receive — especially large doses of anti-anxiety drugs and narcotics to which the elderly are sensitive — or the environments of hospitals themselves: busy, noisy, brightly lit places where sleep is constantly disrupted and staff changes frequently.

Recent studies have linked delirium to longer hospital stays: 21 days for delirium patients compared with nine days for patients who don’t develop the condition. Other research has linked delirium to a greater risk of falls, an increased probability of developing dementia and an accelerated death rate.

“The biggest misconceptions are that delirium is inevitable and that it doesn’t matter,” said E. Wesley Ely, a professor of medicine at Vanderbilt University School of Medicine who founded its ICU Delirium and Cognitive Impairment Study Group.

Long-Term Effects

In 2013, Ely and his colleagues published a study documenting delirium’s long-term cognitive toll. A year after discharge, 80 percent of 821 ICU patients ages 18 to 99 scored lower on cognitive tests than their age and education would have predicted, while nearly two-thirds had scores similar to patients with traumatic brain injury or mild Alzheimer’s disease. Only 6 percent were cognitively impaired before their hospitalization.

Cognitive and memory problems are not the only effects. Symptoms of post-traumatic stress disorder are also common in people who develop delirium. A recent meta-analysis by Johns Hopkins researchers found that 1 in 4 discharged ICU patients displayed PTSD symptoms, a rate similar to that of combat veterans or rape victims.

David Jones, a 37-year-old legal analyst in Chicago, Ill., said that he was entirely unprepared for persistent cognitive and psychological problems that followed the delirium that began during his six-week hospitalization for a life-threatening pancreatic disorder in 2012. Terrifying flashbacks, a hallmark of PTSD, were the worst. “They discharged me and didn’t tell me about this at all,” said Jones, whose many hallucinations included being burned alive.

Jones’s ordeal is typical, said psychologist James C. Jackson of Vanderbilt’s ICU Recovery Center, a multidisciplinary program that treats patients after discharge.

Vivid Flashbacks

“They go home and don’t have the language to describe what has happened to them,” said Jackson, adding that such incidents are often mistaken for psychosis or dementia. “Some patients have very striking delusional memories that are very clear distortions of what happened: patients who were catheterized who think they were sexually assaulted and patients undergoing MRIs convinced that they were fed into a giant oven.”

Some hospitals are moving to prevent delirium through a more careful use of medications, particularly tranquilizers used to treat anxiety called benzodiazepines, which are known to trigger or exacerbate the problem. Others are trying to wean ICU patients off breathing machines sooner, to limit the use of restraints and to get patients out of bed and moving more quickly. Still others are trying to soften the environment by shutting off lights in patients’ rooms at night, installing large clocks and minimizing noisy alarms.

A recent meta-analysis led by Harvard researchers found that a variety of non-drug interventions — which included making sure patients’ sleep-wake cycles were preserved, that they had their eyeglasses and hearing aids and that were not dehydrated — reduced delirium by 53 percent. These simple fixes had an added benefit: They cut the rate of falls among hospitalized patients by 62 percent.

Inouye and other experts say that encouraging hospitals to recognize and treat delirium is paramount. They have vehemently argued that federal officials should not classify delirium as a “never” event for which Medicare payment will be denied, fearing that would only drive the problem further underground. (“Never” events include severe bedsores.)

Delirium “is not like pneumonia or a fracture” and lacks an obvious physical indicator, said Malaz Boustani, an associate professor of medicine at Indiana University. He proposes that Medicare create a bundle payment that would pay for treatment up to six months after delirium is detected.

Creating effective incentives is essential, said Ryan Greysen, an assistant professor of medicine at the University of California at San Francisco. Delirium, he said, suffers from a “pernicious know-do gap” — a disparity between knowledge and practice. Many proven interventions, he said, do not seem sufficiently medical. “There’s no gene therapy, no new drug,” Greysen said. “I think we need to put this in the realm of hospital protocol, which conveys the message that preventing and treating delirium is just as important as giving people their meds on time.”

Growing Awareness

Awareness that delirium is a significant problem, not a transitory complication, is recent, an outgrowth of growing expertise in the relatively new field of critical care medicine. The graying of the baby boom generation, whose oldest members are turning 69, is fueling interest in geriatrics. And many boomers are encountering delirium as they help care for their parents who are in their 80s and older.

“In the early 1990s, we thought it was a benevolent thing to protect people from their memories of having a tube down their throat, of being tied down, by using large doses of drugs to paralyze and deeply sedate patients,” Ely noted. “But by the late 1990s, I was just getting creamed by families and patients who told me, ‘I can’t balance my checkbook, I can’t find my car in the parking lot and I just got fired from my job.’ Their brains didn’t work anymore.”

Delirium “is now taught or at least mentioned in every medical and nursing school in the country. That’s a huge change from a decade ago,” said Inouye, adding that research has increased exponentially as well.

In some cases, delirium is the result of carelessness.

One woman said she was repeatedly rebuffed several years ago by nurses at a Washington area hospital after her mother started acting “stoned” after hip surgery. “She said things like ‘I’m having a dinner party tonight and I’ve invited a nice young man to meet you,’ ” recalled the daughter. She asked that her name be omitted to protect the privacy of her mother, now 96, who lives independently in Northern Virginia and “still has all her marbles — and then some.”

“The nurses kept telling me she was off all medication” and that her confusion was to be expected because of her age. “It was only when I insisted on talking to the doctor and going through her chart” that the doctor discovered that a motion sickness patch to prevent nausea had not been removed. “Within an hour, my mother was acting fine. It was very scary because if she hadn’t had an advocate, she might have been sent to a nursing home with dementia.”

Inouye, who developed the Confusion Assessment Method, or CAM scale, now used around the world to assess delirium, said that significant systemic obstacles to preventing delirium remain.

“We need to back up in our care of older patients so that we don’t treat every little symptom with a pill,” she said. Sometimes, she said, a hand rub or a conversation or a glass of herbal tea can be as effective as an anti-anxiety drug.

Two months ago, Inouye, who is in her 50s, was hospitalized overnight, an experience that underscored the ordeal that older, vulnerable patients face. “I was woken out of the deepest sleep every two hours to check my blood pressure,” she said. In addition, alarms in her room began shrieking because a machine was malfunctioning.

“Medical care,” she added, “has evolved to be absolutely inhumane to older people.”

Hospital Elder Life Program (HELP)

In an effort to prevent or reduce delirium, Inouye created a program called HELP, short for Hospital Elder Life Program, currently operating in 200 hospitals around the country. While the core of the program remains the same, each hospital implements the program in different ways. Some enroll ICU patients, while others exclude them. A 2011 study found that HELP saved more than $7 million in one year at UPMC Shadyside Hospital in Pittsburgh, Pa.

At Maine Medical Center in Portland, HELP is a voluntary program open to patients older than 70 who have been in the hospital for 48 hours or less and do not show signs of delirium. ICU and psychiatric patients are excluded. The program relies on a cadre of 50 trained volunteers who visit patients up to three times daily for half-hour shifts, providing help and companionship and helping them stay oriented.

The CAM scale is built into the hospital’s electronic medical record, said geriatrician Heidi Wierman, who oversees the program and heads a medical team that sees patients regularly. HELP prevented delirium in 96 percent of patients seen last year, she said, adding that resistance by doctors and nurses to the 13-year-old program has been minimal because “we tied the incidence of falls to the prevention of delirium.”

Marylou Turpin, whose husband recently returned to their home outside Nashville, is planning to enroll him at Vanderbilt’s ICU Recovery Center as soon as possible. “I’m just hoping we can have some kind of life after this,” she said.

“A Surprising Side Effect of Hospital Stays.” Next Avenue. N.p., 05 Mar. 2017. Web. 09 Mar. 2017.