Alzheimer’s disease is the most common cause of dementia among older adults, according to the National Institutes of Health National Institute on Aging, and it is currently ranked as the sixth leading cause of death in the U.S. But a statistic that may hit home even harder is that every 70 seconds, another American family is affected by Alzheimer’s; more than 10 million people are caring for a loved one with the disease.
So, it is significant that November is both National Alzheimer's Disease Awareness Month, and National Caregiver Month. The former aims at making the general public more aware of the disease and its scale among the U.S. population, as well as to bring new light to potential care options for those affected. The latter observance’s 2020 theme, #CaregivingInCrisis, is meant to highlight the new realities that family caregivers and their loved ones now face.
Even without the debilitating impact of the coronavirus pandemic, recognizing symptoms and caring for those with various levels of dementia can be a daunting task. Debra Lang of Bedford Hills, owner of Seniors Helping Seniors of Northern Westchester & Putnam, knows all about those challenges. Her business is a companion care agency that employs seniors who provide in-home assistance to other seniors. “I look to hire seniors who are active and engaged and enjoy spending time with other seniors,” Ms. Lang told The Record-Review in a recent interview.
Ms. Lang said a lot of people are now dealing with relatives over long distance simply because families no longer live close together; the pandemic has merely served to increase isolation and make in-person visits less likely. The distance also makes determining a parent’s health more difficult. She said she often gets calls from adult children who live out of state and want to “have someone in the home with mom to determine ‘how good of an actress is she?’” Ms. Lang explained she chose to say “mom” because there is probably a 65/35 split of women to men, primarily because women tend to live longer.
“People will sometimes use Alzheimer’s and dementia interchangeably,” explained Ms. Lang, but they are not the same. “Dementia is more of a general term,” she said. “It implies an impaired brain that interferes with the ability to think and act clearly. Alzheimer’s is a single type of general dementia.”
The NIA says Alzheimer’s is the most common cause of dementia among older adults. It defines dementia as the loss of cognitive functioning — thinking, remembering and reasoning — and behavioral abilities, to such an extent that it interferes with a person’s daily life and activities. It may range from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of daily living.
According to the Alzheimer’s Association, Alzheimer’s is a degenerative brain disease that is caused by complex brain changes following cell damage. It leads to dementia symptoms that gradually worsen over time. The most common early symptom of Alzheimer’s is trouble remembering new information, because the disease typically first impacts the part of the brain associated with learning. As Alzheimer’s advances, symptoms get more severe and include disorientation, confusion and behavior changes. Eventually, speaking, swallowing and walking become difficult.
“Memory loss is the one most people relate to,” Ms. Lang said, “but most people experience casual instances of forgetfulness, which are probably just a sign of normal aging. If you find yourself saying, ‘It’s right on the tip of my tongue,’ and then later it comes to you, it’s probably normal memory loss.” A key indicator is asking the same question over and over again, without being able to hold on to the information. “It’s when it never comes to you —when you’ve never actually retained the information — that it could be a sign of a more serious problem.”
The best method for determining the presence and extent of the disease, said Ms. Lang, is through observation or self-observation over a period of time. Often an indication may be a pattern of forgetting appointments or important events. A physician will ask questions and can do a variety of physical and neurological tests during an annual checkup, but the Alzheimer’s Association notes there is no single diagnostic test that can determine if a person has Alzheimer’s disease.
Ms. Lange observed, “There’s a tremendous fear factor — there’s a tremendous denial factor there.” She went on, “It’s very hard for some people to accept that there may be something as significant or scary as Alzheimer’s going on. Most of our clients are fiercely independent. If you took 10 seniors and asked them what’s most important, nine of them would say they want to live in their own home — they don’t want to live out their days in a nursing home. So, if anybody senses that there’s something brewing that may lead in the wrong direction, that’s frightening.”
Ms. Lang said in her personal experience, there are many families that do not want to deal with it. “They may say something like, ‘There’s no cure, so why do we want to put my mom or dad through the testing or making big life changes if there is no cure?’” She said other families may be aware there are some medications that, if taken early on, can help slow down the onset of severe symptoms. “Most often, those who have Alzheimer’s running in their families are all about, ‘let’s see what we can do to slow this down,’ because they’ve lived the challenges associated with having Alzheimer’s in the family.”
The primary goal of the caregiver, said Ms. Lang, is helping clients live the best life they can. “We try very hard to engage clients in activities that are simulating for them and that can, in the long run, help slow the progression. By making sure they are engaged in good communication and being social, we help them to feel less isolated, less depressed, less anxious. By having somebody with them on a regular basis, we can help them engage, and help their state of mind as well as their physical and mental well-being.”
A key focus for caregivers is helping seniors continue to do some of the things that they enjoy, which requires learning about their hobbies and interests. “Those will be hugely important in how they feel about their life,” she said, “along with helping them with good nutrition and some level of regular exercise.”
One helpful tool that families might consider purchasing, said Ms. Lang, is a clock with a large digital display of the day, time and date. Another is music. “A lot of studies show music is a wonderful way to get seniors to engage,” Ms. Lang said. “Something about music and a portion of the brain that it taps into, allows someone who can’t remember what they had for breakfast to remember the lyrics to a song they learned 50 years ago. We always use music because we can see the positive effects.”
Most important, according to Ms. Lang, is keeping those with Alzheimer’s active, and treating them with respect and dignity.
“They will start to withdraw, because it becomes more difficult to follow along in a conversation,” she said. “They are subject to anxiety and depression. Once they shut down, their world becomes smaller and smaller, and going outside of that comfort zone becomes more challenging all the time.
Ms. Lang added, “When their lives are getting smaller, they need to feel like they’re still valued.”