Battling the stigmas of dementia


Jenna Liu

Understanding memory loss, mood swings, misplaced meanings
Once a week, junior Abe Drury travels to the Southhampton Nursing Home to play games and chat with the residents as part of the volunteer group Wheelers and Dealers.
On one of these visits a few months ago, Drury was walking down a hallway when a woman approached him, grabbed his arm and refused to let go.
“She came up to me and was like, ‘Please just stay here with me,’” Drury said. “I didn’t really know what was going on at first … she just held my hand, and I sat with her for about half an hour.”
This was one of Drury’s first encounters with someone with dementia, an umbrella term for the symptoms resulting from a number of diseases that involve the progressive loss of brain function. While the most well-known of these diseases is Alzheimer’s disease, others such as Parkinson’s and Huntington’s disease affect millions across the United States, according to the Institute for Dementia Research & Prevention.
One of the largest organizations fighting to combat dementia is the national Alzheimer’s Association, for which Kim Richmond works as a care consultant. With regard to Alzheimer’s specifically, Richmond said cases of the illness are very prevalent and can cross expected age boundaries.
“There are people who have the disease as young as in their 30s, ” Richmond said. “Statistics are that one out of two will be diagnosed with Alzheimer’s disease at 85 years of age or older and one out of nine after age 65.”
Apart from his time working with residents who have dementia at the Southampton Nursing Home, Drury has also encountered this disease within his own family.
Recently, his grandfather exhibited symptoms that alarmingly resembled dementia. Unfortunately, his fears proved true, giving Drury a firsthand experience.
“Things didn’t click anymore and he started associating things with being really valuable,” Drury said. “He found an address book in his desk and started thinking it was really important — started leafing through it.”
These signs of dementia usually start with something as simple as short-term memory loss, according to the Alzheimer’s Association’s Basics of Alzheimer’s Disease brochure. Over time the individual afflicted with this condition begins to lose his or her ability to communicate and is often prone to mood swings.
Drury still spends time with the woman he comforted in the hallway whenever he volunteers with Wheelers and Dealers, and said it is important to be patient with those who have dementia.
“The [woman] is in her 90s, and her mind has deteriorated a fair amount,” Drury said. “It can be a little unsettling at first, but you just have to keep calm and stick with it.”
Like Drury, junior Hannah Chen also spends her free time volunteering at a nursing facility. As a leader of the volunteer group C.A.R.E., Chen has spent a lot of time with the residents of Bluff Creek Terrace, a home that specializes in memory care assisted living.
“There’s an old lady at the home and every time we go she always asks us if we know a certain girl,” Chen said. “Then she always proudly says, ‘That’s my granddaughter’ and smiles really big. I think it’s the sweetest thing ever.”
Chen said the key to interacting with Alzheimer’s patients is simply treating them like regular people.
“Generally they’re just like anyone else,” Chen said. “You might have to repeat things sometimes, but that’s it.”
While Alzheimer’s disease and other forms of dementia seem to have a lot of national attention, the truth is that many Alzheimer’s patients are not aware that they have the disease, according to When the University of Michigan conducted a Health and Retirement study, the researchers found that 55 percent of patients they screened for Alzheimers had never been examined beforehand, in spite of clear symptoms of dementia.
These numbers may be a result of the stigma that still surrounds dementia as a mental illness, with Chen saying that even today, some in society have negative views on the disease. She added, however, that she believes people are starting to become more enlightened as to what dementia is and are less likely to judge those who have it.
“I think [the stigma] is completely unfounded,” Chen said. “Nevertheless, I do believe that this negative feeling is gradually disappearing as people have become more accepting and supportive.”
One way people can work toward eradicating this stigma and opening dialogue on dementia is by simply improving education on the disease.
“We should spread awareness about the subject of Alzheimer’s and other mental illnesses rather than treat it as taboo,” Chen said.
The Alzheimer’s Association is just one of many organizations that helps circulate information about dementia, according to Richmond. She said in Missouri alone, there are three chapters dedicated to helping those living with dementia.
“We have an 800 number that is available 24/7 for care givers or the person with early stage dementia to call for care and support,” Richmond said. “Educational brochures are also available free of charge.”
Richmond emphasized the need to spur discourse and action on the subject of dementia, and said that such efforts save lives.
“Telling people to call 1-800-272-3900 or directing them to can make a huge difference to someone who is on the journey with dementia,” Richmond said. “One of our goals is to help them to understand they don’t have to walk this walk alone.”
By Jenna Liu
art by Caylea Erickson