What does it feel like to have dementia? That’s a question that researchers, scientists and family members of loved ones have asked time and time again. What is really going on in the mind of the person? How do they view the world? Do they understand what’s happening, or do they think that everybody else are the ones acting strange? The answer to that depends on the person and what stage of dementia they are in.
“No two people experience dementia the same way,” says Erica Labb, Executive Director of Bridges® by EPOCH at Westford. Some individuals could suffer significant memory loss but remain fairly physically healthy. Others can deteriorate at an incredible speed. “It can depend on what type of dementia a person has, their health history and many other intangibles that we aren’t even aware of yet.”
But thanks to research and a growing awareness of dementias such as Alzheimer’s disease, we are gathering a clearer picture of what it “feels like” to have dementia, particularly in the early stages of the disease. “If a person is in the early stages of dementia, they are still capable of many things, which makes it easier for them to record their emotions, feelings and experiences,” says Erica. “There are many first-hand accounts, speakers and advocates out there who are open and honest about their experience, and they’re helping change the outlook on what dementia is and what it isn’t.”
However, as dementia progresses, we have fewer first-hand accounts of what the individual is experiencing and have to rely more on what we, as caregivers and medical professionals, observe. That’s because, due to the changes and deterioration of the brain, individuals simply cannot communicate how the disease is affecting them.
A recent book by neuroscientist Dr. Barbara Lipska may be our best view into the mind of those individuals with mid-stage dementia. At the age of 63, Dr. Lipska developed a form of brain cancer that caused similar cognitive changes to that of someone with dementia – a field she had studied extensively. After surviving cancer and regaining her faculties, she wrote about the experience in her memoir, The Neuroscientist Who Lost Her Mind.
One theme that keeps rising to the top in her memoir is that, even though she had been trained in recognizing the symptoms of dementia, she wasn’t able to notice them happening to herself. She writes that it felt like the world around her had changed and gone crazy while she remained the same. The part of her brain that would have allowed her to know that something was wrong was the very part of her brain that was being affected.
“Dr. Lipska’s experience is an invaluable look into the mind of someone with dementia, and it can help all of us have a better understanding of what our loved ones are going through as they journey through this disease,” says Erica. “Pairing her findings with the physical and cognitive changes we know take place during the course of dementia can give us, if not a perfectly clear picture, at least a better idea of how our loved ones experience the world.”
Physical Changes
The brain is the supercomputer of our body and manages every aspect of life. As dementia progresses throughout this organ, people experience physical changes alongside the more talked-about symptoms such as memory loss and mood swings.
Recent research has suggested that very small physical changes may be the first sign that someone has developed dementia – and can be observed sometimes long before any cognitive changes occur. These include a slowing gait (speed of walking), poor balance and poor grip strength. During the progression of the disease, an individual will gradually lose abilities such as coordination, spatial awareness, reaction time and bladder control. In the late stages of dementia, the body deteriorates to the point that movement is no longer possible.
Cognitive Changes
Cognitive changes are the most “visible” signs of dementia because it is jarring and confusing for everyone involved. A person with dementia may morph into someone who’s practically unrecognizable (a mild-mannered mother will throw tantrums, or a mild-mannered father may resort to swearing constantly). In the early stages, cognitive changes may seem like simple “senior moments,” like forgetting where the car keys are or missing an appointment or two. Eventually, forgetfulness and confusion will accelerate until friends and family members notice. Sometimes, the individual with dementia needs to be coerced into visiting a doctor to receive a diagnosis, since they are unaware that anything is wrong.
In mid-stage dementia, cognitive decline increases and the person becomes more and more dependent on a caretaker. Communication may become an issue, and individuals will become dangerously forgetful (such as wandering away or turning on an oven). They may not know where they are, what time of year it is or fail to recognize close family members.
In late-stage dementia, the final stage of the disease, most individuals will lose their ability to communicate. As with the physical deterioration, the cognitive decline progresses until the person’s ultimate death.
Knowing What’s Ahead
Although it’s sobering to understand the progression of a cognitive disease like Alzheimer’s, Erica says that knowing what’s ahead for you or a loved one can better help you prepare for challenges and make solid plans to provide peace of mind. Alongside all the technical coordination, she urges caregivers and seniors to always remember that, no matter what happens during the journey, it’s because of the disease, not the person.
“That same person you love and care about is the same on the inside, no matter how much the disease may change how they act,” she says. “They still feel love, happiness and joy, and creating those moments for them is part of our mission at Bridges® by EPOCH at Westford. We believe that it’s possible to bridge the gaps left by memory loss to help seniors with dementia and their loved ones share meaningful moments and create treasured memories. “
Comprehensive Services
At Bridges® by EPOCH at Westford, we know no two residents are alike. That’s why we’ve designed our services to address the distinct challenges each resident faces. With comfort, safety and happiness as our top priorities, residents receive unmatched personalized attention, no matter the stage of memory loss.
Community Amenities
Bridges® by EPOCH at Westford features a beautiful residential design. Every inch has been thoughtfully designed to enhance the lives of those with memory loss. Soft colors, directional cues, aromatherapy and interactive life stations are placed throughout the community to create a peaceful and secure environment so residents may enjoy great comfort, familiarity and security.
Contact us today to learn more.