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
The biggest challenge I faced in caring for my mother in her final years was finding a live-in aide who was trustworthy, compassionate and compatible with my mom. Oh, yes, and affordable.
I met a few women who had solid experience as live-in aides but lacked warmth. I met a few others who were quite caring but clueless. And I met one or two who seemed kind of perfect but wanted too much money.
I employed nearly a dozen live-in aides over the course of two years – some who worked for agencies, some of whom I hired directly – but I’m not sure I ever found the right fit for my mom. In retrospect, the reason for this is quite simple: 1.) The job of working as a live-in aide is extremely difficult; and 2.) There aren’t enough men or women (mostly women) who are both willing and available to do the work.
Consider the statistics in a report that consulting firm Mercer released last month, as reported by Home Health Care News. The number of new job openings for home-care aides is projected to grow by a third to 423,000 by 2025. And because the number of elderly Americans in need of home-care services also is growing rapidly, Mercer forecasts a huge shortage of aides. How huge? Nearly 450,000 by 2025.
The shortage will be worse in some parts of the country than in others. Indeed, a number of Midwestern states are seen as having a surplus of home-care aides. But not New Jersey. The Garden State is among about 10 states, including New York, Pennsylvania, and Massachusetts, forecast to have the most severe shortages.
The situation isn’t all that hard to grasp once you understand the reality of working as a home-care aide – particularly those who are hired to live with the client. Live-in aides like the women who took care of my mother spend weeks at a time isolated from their friends and family, typically taking a few days off a month. They have to be on guard 24/7 in case the client falls or wanders off. And if the client suffers from dementia, as my mother did, the aide may be summoned at any hour of the day or night for no apparent reason.
New Jersey Monthly magazine recently assigned a reporter to shine a light on the largely hidden world of home-care aides. The article, "Home Health Aides Are a Vital Force for New Jersey’s Most Vulnerable," captures the difficult challenges home-care workers face – and the dedication many of them bring to the job.
“Aides sleep in back rooms and on sofas, lightly, in case their charge wakes up in the middle of the night to use the bathroom,” wrote author Tina Kelley. “Sometimes they don’t get any rest at all.”
Some of the aides interviewed for the article said their clients treated them poorly. “Some clients … are overtly racist; other clients and their families treat the aides as though they don’t exist.”
My business partner, Donna, and I experienced this first hand with one of our earliest clients at Twin Lights Home Care. Several aides who took care of the client, a woman in her 80s, complained about being ignored or belittled whenever the woman’s grown sons came to visit. Complicating the situation was the fact that the men had a strained relationship with their mother.
Despite the hardships, most home-care aides earn low wages. How low? According to New Jersey Monthly, the average is just $23,000 a year.
My experience has taught me that a trustworthy, thoughtful, compassionate home-care aide is worth her weight in gold. That’s why my partner and I do all we can to show our respect and appreciation for the aides who serve our clients – from providing living wages to scheduling relief when they need it, to doing little extras like giving them bonuses at Christmas and on their birthdays.
If you need to hire a home-care aide and want the assistance of an agency, be sure to ask them a few important questions up front:
The other option is to hire an aide directly. But as the above-cited statistics make clear, that’s becoming increasingly difficult to manage. If you do find an aide you like, my advice is simple: Treat her with kindness, dignity and respect. You’ll get all that, and more, in return.
Written by T.J. Foderaro