Other people’s illnesses have intrigued me since I was very young. Seeing someone suffer hurts me and makes me want to do everything I can to help them. I love caring for people and making them feel special and loved. A disease that interests me significantly is Alzheimer’s disease.
(This post is the ethnographic research paper Katy wrote for her 11th grade English class. Students in Joe Freeman's classes selected a group to meet and learn about. Katy did her field work at Grandview Gardens At Redstone Village, an assisted living facility. You can read more about the ethnography project here.)
When I was very young, my great-great-Aunt Molly suffered from dementia. Since I was so young I did not understand what was wrong with her. I have had friends whose grandparents suffered from dementia and it broke my heart. I had always been told how terrible it was and I could not imagine going to see my grandmother and her not knowing who I was. Not only is it difficult for the patient, but for the family members as well. This interest and desire to help others lead me to spend time with and study the patients at Grandview Gardens, a memory care center in Huntsville, Alabama, to find out what is the best way to help dementia sufferers.
At the beginning of my research, my knowledge of dementia and Alzheimer’s disease came from television shows, movies like The Notebook, and things I had heard. I did not know what causes dementia, the difference between Alzheimer’s and dementia, what the specific symptoms are, any treatment options, or any scientific facts about dementia. Everything I knew about dementia and Alzheimer’s disease could have been summed up by the statement: dementia is when old people cannot remember things or people and say things that do not make sense. Finding out more about dementia and Alzheimer’s disease and what they actually are was very important to me before I started interacting with people with dementia and Alzheimer’s because I had no idea if there was a certain way I was supposed to act or if there were things I should not do.
Dementia is defined by the National Library of Medicine as, “a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment, and behavior.” The Alzheimer’s Association defines dementia as, “a general term for a decline in mental ability severe enough to interfere with daily life." This is caused by damage to brain cells, which interferes with the cells' ability to communicate with each other causing the symptoms of dementia.
There are many different types of dementia, Alzheimer’s disease being one of them. Different types of dementia cause different symptoms and are associated with different parts of the brain. The frontal lobe controls reasoning, planning, parts of speech, movement, emotions, and problem solving. The parietal lobe controls movement, orientation, recognition, and perception of stimuli. The occipital lobe controls visual processing. The temporal lobe controls perception and recognition of auditory stimuli, memory, and speech. The symptoms depend on what area of the brain contains the damage cells. Most of the changes to the brain are permanent and get worse over time.
There is not a specific test that diagnoses someone with dementia.
The diagnosis is based on medical history, a physical examination, laboratory tests,
characteristic changes in thinking, and day-to-day function and behavior. In order for the cause of the symptoms to be determined as dementia, at least two of the following have to be significantly impaired: memory, communication and language, ability to focus and pay attention, reasoning and judgment, and visual perception. Diagnosing a specific type of dementia can be difficult because symptoms and brain changes tend to overlap.
Alzheimer’s disease is the most common form of dementia. Between 60 and 80 percent of people diagnosed with dementia are specifically diagnosed with Alzheimer’s. Alzheimer’s is a progressive form of dementia meaning that the symptoms get worse over time. Alzheimer’s sufferers have high levels of proteins inside and outside the hippocampus, which is located in the temporal lobe. These proteins interfere with the cell-to-cell communications in the brain. The hippocampus is the center of memory and learning in the brain and is often times the first area of the brain to be damaged. Because of this, memory loss is commonly the first symptom to appear.
The treatment and care for dementia sufferers depends on the cause and the area of the brain being affected. In most progressive types of dementia, like Alzheimer’s, there is no cure that stops or slows the damage of the brain cells. Some drugs can temporarily improve the symptoms but there is no definite cure. The easiest ways to prevent dementia are maintaining a healthy diet, keeping your heart in the best shape possible, and exercising regularly.
After learning all of this I began to understand the difficulties of caring for someone suffering from dementia. One of the things that still continues to puzzle me is how to deal with behavioral problems. I have always seen adults as being able to do what they want, knowing that they can do what they want, and handling the responsibility that comes with that freedom well.
Adults who suffer from dementia do not always realize that some of their actions are not acceptable. They can say, “Well, I’m an adult and I can do whatever I please." They have no reason to listen to what a nurse tells them to do and a nurse cannot force them to do anything. This being the case, it is very difficult to deal with behavioral problems. There are also safety and security issues. Some of the patients have trouble walking and need to stay in a wheelchair, but forget that they are supposed to stay in the wheelchair. Some of the patients might feel the need to just leave for a reason that they think is logical but in reality, makes no sense at all. With one of the symptoms affecting emotional stability, some sufferers can get upset over something that does not make sense to someone else and not cope with it in the best way. For these and other reasons, people with dementia need to be under direct supervision.
One of the most important things when caring for someone with dementia is to love them and make them feel as normal as possible. This is not specifically stated on WebMD or any other medical website but it is easily the most important. It sounds cliché, but TLC is very important. Every human being deserves to be loved and cared for like anyone else. Every human being wants to be loved and cared for.
Redstone Village is a residential housing neighborhood that provides assisted living, skilled nursing and rehabilitation services, and memory care for adults ages 62 and up. Redstone Village, as stated on their website, strives to provide a secure social lifestyle within a hospitable community. Grandview Gardens, the memory care center there, does an outstanding job with this. The things that the staff at Grandview Gardens do to fulfill the needs of the residents go beyond what is required. Not only do they care for the residents like family members but the facility is perfect for housing people who suffer from dementia.
Annie Dunson is the first person at Grandview Gardens I contacted. She was more than willing to let me conduct my research there. The first time we met she gave me a tour and I was truly amazed at how personalized the facility is. Grandview Gardens is a separate building from any other assisted living or skilled nursing housing at Redstone Village and was specifically designed to house people suffering from dementia.
Annie not only showed me around but she told me what things were and why they were made like they are. In the floor plan of Grandview Gardens Annie explained that there are no dead ends for someone walking around the building. The pathway that goes throughout Grandview Gardens is continuous because for someone who is just wandering, hitting a dead end can allow anxiety to set in and upset them. Having a continuous path prevents this and gives the residents something to do.
In areas where only staff are allowed, the floor is dramatically darker than the other areas. The effect that dementia has on eyesight causes one to see the darker area in the abrupt change in color as a hole or as water. Because of this the residents will not set foot in staff-only areas.
Grandview Gardens has two wings, each equipped with a social interaction and dining area. In these areas, the residents will gather for staff lead activities, meal times, or sitting and hanging out in their free time. At the end of each wing is another area where residents can relax. On the left side is a “movie theater” with a couch where black and white movies are shown all day. On the right is a relaxation area and a small fish tank referred to as “serenity square.” Outside of serenity square is a fenced-in patio with outdoor seating and flowers allowing the residents the opportunity to get some fresh air. In the back corner is a beauty shop and barber that opens each Wednesday for residents to get haircuts. Near the staff area is a bench Annie called “the bus stop.” There is a bench, lamppost, and mural that makes this area look exactly like a bus stop. When residents say that they need to go somewhere (i.e. home, work, school, etc.), nurses will tell them to go to the bus stop and wait for the bus. Once the resident calms down and no longer feels the need to go somewhere, a nurse will come get them.
Next to the bus stop is a phone. When residents want to make a call that is not logical, they are told to pick up the phone and call the operator. When the phone is used, it gets directed to the front desk where a staff member picks up the line pretending to be the operator and helps the resident. Near the bus stop is a room that is set up like a general store. Residents can go in there to “purchase” candy, soda, toiletries, playing cards, and other small things.
Something that is very important in a dementia sufferer’s life is routine. Residents have a calendar that lists the activities for each day. This calendar is carefully put together by Kelly, the activities coordinator.
Every Tuesday, Kelly insists that the residents get homemade ice cream in the afternoon. On Wednesdays, everyone goes to get their hair done. Every morning, the residents
exercise. There are different activities each day that engage the memory skills of the
residents. The activities include things like flyswatter balloon volleyball, which is
extremely entertaining to watch and be a part of, and simple circle discussions. Kelly
also arranges for the residents to go on field trips to places like Red Lobster. The
residents actively participate in these events on a daily basis.
The care that is given at Grandview Gardens is given on such a personal level. It is obvious that the staff love what they do and genuinely care about the residents. Providing this level of care for the residents requires a huge personal investment and level of commitment. An example of the staff’s commitment was evident when the whole city got snowed in and all of the roads were closed. During this time, the staff slept at Grandview Gardens for several nights to make sure that the residents would have everything they needed.
My first experience with the residents at Grandview Gardens was on Tuesday, February 4, 2014, around 3:00 p.m. The first thing that I picked up on was that the staff do not refer to the people that live there as residents or patients, but as “loved ones.” This quickly characterized the environment that it was for me. The loved ones were eating their homemade ice cream and sitting around a large dining table when I arrived. Each one of them flipped through a copy of Old Huntsville magazine while Kelly read bits and pieces out loud and lead discussion. Nothing screamed “dementia” at all. It just looked like a bunch of senior citizens sitting around a table eating ice cream. Everything was as normal as could be.
Dementia was soon evident when a woman who had been walking around the room sat down and apologized for being so late. The odd thing about this is that she had been there the whole time. It seemed like she was walking around trying to remember what she was going to do and then when she remembered she sat down. The embarrassment she felt was clearly shown in her repeated apology and worried look on her face. She knew that she forgot what she was supposed to be doing and when she realized that other people knew too, she was very embarrassed.
By looking closer at the loved ones around the table, it became clearer who was worse off and who was doing well. You would expect someone in this position to be flipping through the magazine, eating their homemade ice cream, and actively listening to Kelly. Some of the loved ones were doing just that. Some, on the other hand, just sat in their chairs with a blank look on their faces. They had not opened their magazines and did not respond in any way to Kelly making conversation. It was almost as if Kelly was talking to herself because not many of the loved ones participated in the conversation with her. Regardless, Kelly continued to read sayings from one of the columns of the magazine.
Later, a woman showed up with a decorative rooster made from clothespins and felt. She gave it to Kelly and said that it was her present for her baby for the baby shower. The woman got confused because Kelly’s husband brought the baby by earlier for a visit. She thought that we were having a baby shower for Kelly. Once she realized that she was incorrect, she was very embarrassed and kept saying, “Oh, I thought it was a baby shower.” Kelly handled this confusion very well. She said over and over how sweet she was for thinking of her baby. She also showed the rooster to all of the loved ones announcing how much she loved it. Because of this, the woman calmed down quickly and was no longer embarrassed. Not once did Kelly correct her or tell her she was wrong, she only said positive things.
Towards the end of reading the magazine, one of the things Kelly said to spark
conversation was, “Who is originally from Huntsville?” To this one woman responded
almost immediately saying that she was. She was very excited about this. Shortly after
she said she was born in Huntsville, her daughter, who was visiting her, said, “No, Mom,
You’re from Mississippi.”
The woman was extremely embarrassed and kept saying, “Oh! Oh! I’m so sorry!” Her daughter realized that her mother was getting upset and quickly said, “It’s okay, Mom. You’ve lived here so long it feels like you’re a native.” The woman stopped apologizing and verbally expressing her embarrassment but the nervousness could still be seen on her face.
After the first visit, a recurring theme stood out to me. When the loved ones forgot something or said something that was incorrect and realized it, they got very embarrassed. After some research, I learned that this embarrassment is common in dementia sufferers and stems from feeling like they are a bother to others. Some sufferers avoid saying or doing things because they don’t want to mess up or be a hassle to others. This made me wonder if talking to the loved ones that didn’t speak and allowing them to speak about whatever they wanted would be beneficial to them in anyway.
I decided to try this by talking to a man named Robert.* Annie recommended that I speak with Robert because we had a common interest in painting. Robert is a sweet, 88-year-old man who can warm your heart easily. When in the group with other loved ones, he does not speak unless he is asked a question directly. In this group setting Robert is very patient with the loved ones’ whose dementia makes them act out. If one of the other loved ones says something silly to Robert, he kindly nods his head and carries on with whatever he is doing. Robert speaks slowly and pauses frequently, but doesn’t seem to have any major signs of dementia.
I started off by asking Robert what he likes to do, to which he replied, “Well… I like to sleep." We both chuckled and I mentioned painting. Robert slowly said, “Oh yeah… I do like to paint." When asked what he liked to paint he said, “I see something... and it develops... and I express it… it’s not always recognizable.” Robert and I continued to have a normal conversation. We talked about his love for ballroom dancing and about his children. He also mentioned how much he liked dogs. In the conversation I made sure that I was treating Robert the same way I would treat anyone else. He responded very well to this and I could tell that he enjoyed just talking about himself and the things he loved. When it was time for me to leave I thanked him for his time and he smiled and said, “Nice to meet you… Katy.”
If they want to go on and on about how the sky is purple and the grass is orange, let them do it.
Through these and other interactions with the loved ones at Grandview Gardens, understanding how to care for and interact with someone who suffers from dementia became easier for me to understand. Something you should not do is correct them unless you have to. When they are notified that they said or did something wrong, they tend to get very embarrassed and upset. This embarrassment makes them shut down and they will not happily talk to you or do anything you ask. You should, however, listen to them. If they want to go on and on about how the sky is purple and the grass is orange, let them do it.
Having someone listen to them without interjecting and correcting them makes them feel normal and loved. This love builds relationships which are very beneficial to the loved ones. Loved ones can rely on people they have relationships with to help them and provide a sense of calmness. The best way to care for someone that suffers from dementia is simply to be patient with them and love them.
* Name changed to protect identity.
Illustration: "The Pure of Heart," part of a series representing the Beatitudes, white charcoal portrait on black paper, by Katy Shoemake ’15. This is not a portrait of one of the people Katy interviewed at Grandview Gardens.
"About Us." Redstone Village. N.p., n.d. Web. 14 Mar. 2014.
"Alzheimer's Disease and Dementia | Alzheimer's Association." Alzheimer's Association.
Alzheimer's Association, n.d. Web. 26 Feb. 2014.
"Dementia - WebMD: Types, Stages, Causes, Symptoms, Treatments." WebMD. "Experience 12 Minutes In Alzheimer's Dementia." YouTube.
Kinser, Patricia A. "Brain Structures and Their Functions," Bryn Mawr College, 2000. Stevenson, Sarah. "Dementia Care Dos & Don’ts: Dealing with Dementia Behavior Problems."
Senior Living News and Trends. "A Place For Mom," 8 Feb. 2013.
Stovall, Glenda. The Breathtaking Brain