Putting the Pieces Back Together
When Memory Disorders Become a Personal Matter
Before we are even aware of our own existence, time is the gatekeeper, then the older sibling, then the parent, and finally in our later years, our angel that perhaps may also be attributed to our fallen loved ones and friends before us. From the moment we are conceived to the day we are born, time is an abstract concept, yet also a succinctly defined truism we are made to subscribe to – and subscribe we must and shall. As we pass through infancy and childhood, wellness visits are means by which pediatricians make assessments of our development and overall health based upon various impersonal objective characteristics we exhibit, which are then plotted against our very personal chronological ages. Adulthood is no better for the fugitive of the almighty time continuum, but we can cling to hope that we get to age gracefully and seamlessly. But, what happens when our grandparents or parents are handed the wild card? We seek to understand, band together and persevere – and persevere we shall.
The National Institutes of Health describes Alzheimer’s disease as “an irreversible, progressive brain disorder that slowly destroys memory and thinking skills.” Alzheimer’s is one of a group of brain disorders called dementias. The Center for Disease Control defines dementia as, “a syndrome characterized by cognitive or memory impairments not involving any alteration in consciousness or alertness. The cognitive impairment characterizing dementia may include memory loss, difficulty in understanding or using words, inability to carry out motor activities despite adequate motor function, and failure to identify or recognize objects.” Over time, a person’s ability to carry out even the simplest day-to-day tasks becomes increasingly difficult, so much so that around-the-clock supervision is necessary just to avoid risk of personal injury to self or others. First appearing as mild symptoms in a person’s mid-60s, the NIH estimates that grater than five million Americans suffer from this disease.
“In early dementia, the patient does not recognize it,” said Dr. Terrence D’Souza, M.D., a Neurologist with Ochsner Baptist Medical Center. “It’s the family that notices there’s something wrong – their behavior has changed or their mood has become irritable. They might also be at work and they won’t realize it, but they will begin to ask for help from their friend or the person working the computer next to them. That is when co-workers start realizing, hey this is an ongoing problem and something has to be done about it. This is when it’s usually brought to the family’s attention, and they come see me.”
What happens when a patient presents to Dr. D’Souza with symptoms suggestive of dementia? “What we do is basically a neurological assessment to make sure nothing else is going on, such as a mini-stroke the patient may have had without realizing it,” said Dr. D’Souza. “In those with Alzheimer’s, the neurological exam is perfectly normal, but what’s known as a very brief memory test – where we ask the patient to remember three words after two to three minutes – is a highly sensitive test in these patients, as is the ‘clock drawing.’ They use all of the processing abilities. We also will definitely order a CAT scan or MRI just to be sure nothing is going on, and blood tests which rule out undiagnosed metabolic problems such as diabetes or kidney disease.”
Dr. Terence C. D’Souza specializes in memory disorders at Ochsner Health System. Photo provided by: Dr. Terence C. D’Souza.
As the disease progresses and declines in other domains (language and executive function skills such as problem-solving and judgment) grow increasingly more apparent, activities of daily living suddenly become daunting to sequence appropriately. Entire steps may be missed during teeth brushing, and things like cooking, and other activities requiring safety awareness, tend to become a matter of personal safety unless caught in time. “It’s really a battle,” said Dr. D’Souza. “Early on, they may be functional at home and fully able to do things – but eventually they may have to give up driving because judgment may become a problem.” Although once functionally independent, this is the point when allowing independence to continue at home poses a great risk to personal safety, and this is when supervision by family or other caregivers is in order.
Taking care of a loved one with Alzheimer’s, which often requires ‘round the clock assistance, is a monumental undertaking for any family to suddenly adjust to. This is where the Alzheimer’s Association can step in: the organization is never more than a phone call away, day or night. The Alzheimer’s Association works both nationally and locally to help provide care and support for those affected by Alzheimer’s and other dementias. Currently, it boasts more than 80 chapters nationwide as well as countless volunteers, but not before humble beginnings initiated by a few advocates.
“We started in 1980 as a support group in someone’s kitchen, and the idea was based around all these caregivers who just really needed that support system around them,” said Maggie Connick, Special Events Coordinator of the Louisiana Chapter of the Alzheimer’s Association. “Our vision is a world without Alzheimer’s, and our mission is to not only spread awareness and fund research but have educational programs and support groups throughout the country. Today, we have support groups throughout the state of Louisiana.”
Exactly how does such an organization help to reduce and eliminate the risk of Alzheimer’s? They shift focus to the advancement of research, accomplished not only by fundraising, but through advocacy work at the national and state levels. “It’s really about that research dollar, and so we do a lot of advocacy work. We just got back from our DC forum,” he said. “We talk about disease statistics, what they mean to healthcare, and how the state can help us in our fight alongside those with Alzheimer’s and their caregivers,” explained Ann May, Executive Director of the Louisiana Chapter of the Alzheimer’s Association. “Alzheimer’s is the most expensive disease in America - it’s costing us $259 billion– and yet research funding for this particular disease lags behind others.”
Whether it’s their volunteer driven support groups, their countless fundraising walks held across the nation or their professionally staffed 24/7 help line (1-800-272-3900) that offers confidential care consultation, information about the disease, and referrals to other services and more, one thing is for certain - the Alzheimer’s Association is tirelessly working toward their vision of a world without Alzheimer’s.
The Poydras Home of New Orleans, a nonprofit retirement community founded in 1817, has been providing highly specialized care focused on those suffering from Alzheimer’s disease who are unable to be cared for or supervised at home since its opening of the Garden House for Independent Living. Today, through a partnership with the New Orleans Museum of Art, the once-a-month program known as “Artful Minds at NOMA - Guided Museum Tours for Individuals with Dementia” takes 10 Poydras Home residents, staff and caregivers through art-centered activities aimed at enhancing communication and reducing isolation through positive cognitive experiences. Programs such as these are part of a growing international movement of arts in healthcare. This particular program, which saw great success in New York, is currently in its third year here in New Orleans – and its movement doesn’t seem to be letting up anytime soon.
Families and caregivers can help compensate for deficits as well. “Keep a routine,” said Dr. D’Souza. “If the patient can follow the same routine every day, then it’s an adaptation – otherwise what happens is you go on vacation and they get more confused because they are in a new place. Also managing their medicines is very important – try to give them medication once a day– and avoid mid-day medications because the family won’t be there to give it and the patient may either forget to take it, or overdose.”
Although the progression of Alzheimer’s cannot be stopped, ongoing research with certain medications suggests its progression can be slowed down, and that memory function may actually show improvement. Dr. D’Souza recommends that people begin leading healthy lifestyles early for the best chance of prevention.