It was the afternoon of New Year’s Eve when my 80-year-old mother called to say she wasn’t feeling well. I knew from the weakness in her voice that I had to get her to a doctor ASAP.
She had been fighting a cough for more than a week. Although I had seen her at Christmas and been calling daily to check in on her, I was shocked when I arrived at her condominium in Highlands. She was slouched on the couch wearing a nightgown that apparently hadn’t been changed for days. She looked pale and drawn, as if she hadn’t been eating or drinking enough fluids. The condo was a mess.
The doctor took one look at her and more or less ordered me to take her directly to the emergency room at Riverview Medical Center in Red Bank. That night she was admitted with pneumonia. She remained in the hospital for nearly two weeks.
Though it didn’t occur to me at the time, my mother was the victim of what advocates for the elderly call “self-neglect” – a shockingly common occurrence that promises to become even more prevalent as the population of older Americans swells in the coming years. A new report details just how common the problem is.
“Across the United States, solitude has become a deadly threat for hundreds of thousands of senior citizens living at home,” according to an exposé published last week by the New England Center for Investigative Reporting.
Investigative journalist Paul Singer reviewed data supplied by state adult protective service agencies across the country, including New Jersey. What he found was that last year alone, those agencies intervened in more than 142,000 cases to protect elderly men and women from self-neglect.
That’s a huge number. But if anything, the data almost certainly “understates the problem, and probably dramatically,” Singer writes.
“The elder abuse data is not complete,” confirms Alice Page, an adult protective service professional in Wisconsin. “It’s correct in terms of what’s reported, but there are so many cases that aren’t reported.”
When the media reports on cases of “elder abuse,” it’s typically about some sort of criminal activity. That is, some bad actor – a greedy relative, a drug-addicted neighbor – commits theft or, worse, a violent crime.
“But the most common threat,” Singer reports, “is self-neglect: an elderly person unable to provide for their own clothing, shelter, food, medication or other basic needs, and having no one to provide care for them. And it’s a problem that’s growing as the population ages.”
Holly Ramsey-Klawsnik, director of research for the National Adult Protective Services Association, said self-neglect accounts for about two-thirds of all cases reported by state agencies nationwide.
Until recently, elder abuse in all its forms was a “silent issue,” said Edwin Walker, a senior official at the U.S. Department of Health and Human Services. “For decades, people just didn’t want to address it at all.”
Part of the problem is that in a free society, adults are presumed to be autonomous. If they want to stop bathing or cease taking medication, that’s their right.
“We talk about the dignity of risk in these cases,” said Alice Paige, the Wisconsin official. “Some people just choose to live with more risk and accept the consequences. And if you give people choices that involve risk, that enhances dignity.”
It’s a different matter, of course, when the individual suffers from dementia and is incapable of properly assessing and managing risk.
“We do know that self-neglect increases illness, increases emergency room use, increases hospitalization, increases nursing home use, increases hospice use and hastens mortality,” Ramsey-Klawsnik said.
That New Year’s Eve when I took my mother to the hospital served as a wake-up call. My sister and I immediately began researching our options, and soon found a home-care agency that placed a live-in aide in my mother’s condo.
If you have concerns that an elderly family member no long is capable of taking care of themselves, a good first step is having them evaluated by a physician specializing in geriatric medicine. A doctor can help determine whether any cognitive impairment is temporary -- the result of a small stroke, for example -- or a symptom of a progressive form of dementia such as Alzheimer’s disease. The services geriatric specialists provide was the subject of a previous blog post.
Written by T.J. Foderaro
I remember feeling a mix of sadness and anger when the first signs of dementia began to creep into conversations with my mother soon after she turned 80.
She’d say something about all the papers she still had to grade for her journalism students, even though she had stopped teaching five years earlier. Or she’d ask where her dog Kate was, even though Kate had died long ago.
Most painful of all was when she’d ask why my father wasn’t home yet – even though it had been 15 years since he passed away.
I wasn’t very patient with her – at least not at first. I’d quickly correct her, sometimes angrily.
“Mom, you’re not in New York. You’re at Eastpointe, where you’ve lived for almost 10 years.”
In retrospect, I could have handled the situation with a great deal more wisdom and sensitivity. Over time, I stopped correcting her, let her go on saying and believing things that were completely untrue.
But there was part of me that felt guilty for enabling her to live in a fantasy world. This, after all, was a woman who graduated from Vassar, spent 20 years as an award-winning reporter and editor at the Red Bank Register, then capped off her career teaching journalism at Fairleigh-Dickinson. She was all about logic and facts and intellectual rigor. She was among the deepest thinkers I’ve ever known.
I still feel guilty.
How to treat someone with Alzheimer’s disease or other form of dementia is among the most challenging issues of our time, raising profound ethical questions with serious implications for all parties involved. I didn’t fully appreciate this fact until I read a remarkable article in the Oct. 8 issue of The New Yorker magazine. (I’m a lifelong reader of The New Yorker because my mother was a lifelong reader of The New Yorker.)
The article, by staff writer Larissa MacFarquhar, is titled “The Memory House: Should the Illusions of Dementia Be Corrected or Accepted?” MacFarquhar visited a senior community near Cleveland, Ohio, that not only accepts illusions – it encourages them.
“The large central room of the memory-care unit was designed to look like an old-fashioned American town square,” she writes. “There was a small fountain surrounded by plants and a low stone wall; there were a couple of lampposts and benches, tables and chairs set about. … Two long hallways, which led off from the opposite sides of the central room, looked like streets in the same town, with clapboard facades and porches on either side. … The ceiling consisted of bright light panels painted to look like a blue sky dotted with clouds. In the evening, as it began to grow dark outside, lights on the porches came on. Sometime later, the street lamps were lit; and finally, around eight o’clock, the ceiling sky was switched off, so that the unit came to look like a small-town street at night.”
What to make of this approach to dementia care? As MacFarquhar discovered, there’s little consensus among experts about whether “simulated presence therapy,” as it’s called, is either effective or moral. Some view it as a “psychological placebo,” while others see it as outright deception tantamount to lying.
But is lying to someone suffering from dementia the same as lying to anyone else?
“To lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter,” MacFarquhar observes. “If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? … What is more important, dignity or happiness?”
Elder-care experts, it turns out, have been debating the issue for decades. In the 1960s, a doctor-nurse team working with elderly psychiatric patients in the South developed a program called “reality orientation” that was the opposite of “simulated response therapy.”
“The core of the program was not giving up hope that even the most bewildered, isolated patient could, with enough training, return to the world,” MacFarquhar explains. The key to the program was facts – constantly reminding patients who they are, where they are, what day it is, etc. “For decades, reality orientation was extraordinarily influential – even now, it is a rare nursing home that does not have a reality-orientation board somewhere on display.”
But by the 1980s, some practitioners in the U.S. and U.K. began to reject reality orientation in favor of what one pioneering social worker, Naomi Feil, called “validation therapy.”
“She believed that it was wrong to lie outright, but also wrong to correct: the thing to do was to enter into the emotional world of the person with dementia and validate their feelings, because feelings were more important than facts.”
Then, in the 1990s, an Englishwoman named Penny Garner went even further in her rejection of the reality-orientation approach. Her first rule: Never contradict anything someone with dementia says.
“Garner’s method allowed many people with dementia to avoid panic and misery and to live out their last years in a state of happy delusion,” MacFarquhar writes. “How could that be wrong?”
But in fact, Garner’s approach drew strong condemnation from many in the medical community, including the British Alzheimer’s Society. To critics, “even passive lies – artificial worlds and fake bus stops – were just a lazy short-term solution that avoided deeper problems,” MacFarquhar writes of the reaction to Garner’s methods.
Ultimately, the debate over how to treat people with dementia touches on deep philosophical questions about the nature of identity -- the essence of being human. Citing the late philosopher Ronald Dworkin, MacFarquhar writes: “When people dread the total dependency of late-stage dementia, they don’t just dread its effect on others; they dread the way it warps the shape and story of their life. For some, the prospect that they might live their last years content with childlike pleasures, kept happy with benevolent lies, would not be a relief but a horror.”
Dworkin assumed, however, that the man who dreaded late-stage dementia when he was younger is the “same person” as the elderly gentleman who now seems content with a childlike existence.
“But what if the happy [elderly] person can no longer remember anything about the man he once was –- is he still the same person in any meaningful sense? And, if not, is it right to end his happy life in order to preserve the dignity of, in effect, somebody else?”
For those of us with family members suffering from dementia, there are no easy answers to these questions –- no black or white, no “right” or “wrong.” But in thinking about them, we inevitably discover something about ourselves.
Written by T.J. Foderaro
I’ll never forget the feeling of confusion, frustration and fear when I first noticed that my mother, then in her early 80s, had begun showing signs of what used to be called senility – now commonly referred to as “cognitive impairment.” Suddenly she was having trouble paying her bills. She was too quick to say yes to anyone who called on the phone asking for money. She talked about her students at Fairleigh Dickinson as if she were still teaching, even though she had been retired for some years.
My sister and I weren’t sure how to react, in part because we weren’t sure whether our mother merely was slipping a bit mentally, as many people do late in life, or was in the early stages of dementia. Were the symptoms likely to get worse? How much time did we have before she would need help with everyday tasks? Was she at risk of hurting herself?
As we soon learned, our mother was, in fact, displaying early symptoms of dementia. And it wouldn’t be long before we would be forced to make some very difficult decisions about her long-term care – decisions that forced us to weigh her well-being against her limited finances. In retrospect, I wish we had consulted a professional earlier on to get a better handle on my mother’s condition and how it would likely progress.
For family members, the hardest part about dealing with an elderly parent or relative is interpreting – and responding to – early signs of cognitive impairment. To better understand the issues involved, I reached out to Dr. Jessica Israel, a leading practitioner of geriatric medicine. Among other things, she is the corporate chair of geriatrics at RWJ Barnabas Health and director of the James and Sharon Maida Geriatrics Institute. She also is a clinical associate professor at Drexel University’s College of Medicine in Philadelphia, and maintains a private practice affiliated with Monmouth Medical Center in Long Branch.
Dr. Israel graciously agreed to answer my questions about cognitive impairment.
Q: What are the early signs that an elderly person may be cognitively impaired?
A: The early signs sometimes go unnoticed. People experience what is called a lack of executive function. It’s how we plan our day, how we pay our bills. Maybe a person has been doing their taxes every year, but now they can’t manage it. Beyond that, it’s very common to see repetitive behavior, like asking the same question over and over. Sometimes it’s just a change in behavior, like retreating from social situations.
Q: If family members see some of these signs, what should they do?
A: They absolutely should have the person evaluated by a professional, preferably one with a medical background and experience working with elderly patients. It’s important to determine whether the symptoms are tied to some form of progressive dementia or were caused by a treatable illness. It’s not always Alzheimer’s disease. The most common example is depression. It can present initially with memory loss similar to dementia, but it’s ultimately a manifestation of depression, which can be easily diagnosed and treated.
Q: What types of professionals are most qualified to evaluate an elderly person for cognitive impairment?
A: A medical doctor or nurse practitioner. It could be a family doctor, neurologist or psychiatrist, but a specialist in geriatric medicine with a comprehensive practice will tend to have the most experience and resources. Sometimes we involve other types of professionals in evaluating patients and counseling families. For example, if a patient who is an 80-year-old woman and holds a Ph.D. in literature were to present with memory loss, I might refer her to a neuropsychiatrist for additional evaluation. It can be hard to make a diagnosis in patients with high levels of education using only simple office-based tools.
Q: What kinds of tests are performed to determine if an elderly person is cognitively impaired?
A: There are various tests we perform, including the Folstein test, the Montreal assessment and the Hamilton Depression Scale. We also sometimes order CT scans to see if the underlying cause might be a stoke or tumor. We also test for Vitamin B12 deficiency and hypothyroidism, which also can be associated with memory loss.
Q: What are the most common causes of cognitive impairment among the elderly?
A: If we rule out treatable causes, such as depression or vitamin deficiency, then we think about dementia as a diagnosis. Alzheimer’s Disease is by far the most common form, but there’s also vascular dementia, which might be related to a stroke or cardio-vascular disease. And sometimes Parkinson’s disease can lead to dementia. There are many different types.
Q: If it’s determined that an elderly person has dementia, how quickly can family members expect to see the symptoms worsen?
A: In most cases, dementia is a progressive illness. There are basically three stages of dementia, with a fairly consistent timeline. The early stage typically lasts 1-2 years, and often goes undiagnosed. The moderate stage is the longest, approximately eight years. This is when you may start to see behavioral changes. The advanced stage generally is the shortest, only 6-12 months. This is when the person can’t eat or walk independently, is incontinent, and has no meaningful verbal communication. Dementia usually spans about 10 years, start to finish. In early- and moderate-stage disease, it’s important that they be evaluated and family members begin planning for the future.
Q: If concerned family members decide to have an elderly relative evaluated by a professional, should they try to explain what they’re doing and why? Or is it better to avoid the issue and let the doctor or other professional explain the reason for the visit?
A: It’s a question of who the person is and how that person typically reacts to situations. And what kind of relationship you have with the person. Some people have some awareness of their condition and are okay seeking help. Others will absolutely reject the notion that they’re ill. It all depends on the individual and what kind of relationship family members have with that person. Being open and honest if possible, however, would always be my first choice.
Q: Assuming a positive diagnosis of cognitive impairment, what’s next?
A: We really talk to families a lot about safety. We talk to them about driving, which can be very dangerous. We talk to them about safety in the home, the kitchen, the risk of them walking off and getting lost. Should they be wearing a safe-return bracelet, with their name and address on it, or even a GPS bracelet that can help locate them?
Q: If an evaluation determines that an elderly person no longer is capable of living on their own, what are the options?
A: A comprehensive geriatric practice has social workers and other professionals who can discuss the full range of options with family members. There are a lot of day programs for the elderly that are great, where people can go and feel almost like they are going to work every day. There are nursing homes, of course, and that’s not necessarily a bad option, but it can be very expensive. There’s also assisted living. And there are home-care aides. It’s always great to be cared for in the comfort of one’s home. But there’s no one-size-fits-all. Every case is different.
Written by T.J. Foderaro