Dementia: Its affect on behavior and family
By Raman Aryana
PLEASE NOTE: Patients’ names have been changed to protect their privacy
It is a cool morning at the Cleveland Clinic Geriatrics and Diabetes Center. The waiting room is relatively empty and the sun shining through the windows reflects off the tiled floor. Dr. Steven Schwartz, who specializes in geriatrics, the branch of medicine that cares for the elderly, has just started his day by reviewing the files of patients who have appointments with him today. The office is similar to the waiting room except that it is carpeted, so not even footsteps can be heard. It is almost silent in the office, apart from the constant sound of tapping from Schwartz’s keyboard.
Schwartz’s first interaction is with his medical student, who explains to Schwartz the condition of one of the patients, Ann Smith. She has vascular dementia, and the medical student describes her scores on the MoCA, or Montreal Cognitive Assessment, a test designed to screen people for mild cognitive dysfunction. Smith scored a 26/30 last year, but today she scored an 18/30. A score of 26 or higher is usually considered normal, depending on the education level of the patient. The drop in Smith’s score indicates a huge increase in cognitive dysfunction, which is limiting her independence.
The medical student explains that Smith wants to remain fully independent, even though she obviously can’t forever. Schwartz explains that this is a very common issue with dementia patients. Once the medical student completes the overview of the patient, Schwartz goes to meet her.
Schwartz walks into the patients’ room, where Smith and her caretaker are sitting in two of the four chairs. Smith’s caretaker tells Schwartz that Smith is experiencing sundowning — a symptom in which the affected patient becomes more manic and confused in the late afternoon and evening. Schwartz tells her to make an appointment for six months from today. He then gets up and says goodbye to Smith, walks back to his office and goes over everything with the medical student to ensure that any questions are answered.
Schwartz explains that dementia patients must bring in a caregiver or family member to verify the patient’s behavior. Unfortunate as it is, dementia is a disease that affects the mind, he says, so the patients are not always reliable sources when it comes to their own behavior.
Geriatric doctors, such as Schwartz, see these patients every day and can provide no hope for the patient or family. Smith is one of 35.6 million people worldwide who is affected by dementia — a number that is expected to triple by the year 2050, as estimated by the World Health Organization. According to Schwartz, even cancer patients have some hope with options such as chemotherapy, radiation and surgery. But with dementia, there is almost nothing you can do; 100 percent of patients diagnosed with dementia will die from it, or from something related to it.
According to the Alzheimer’s Association, dementia is a group of disorders that involve an irreversible, progressive decline in a persons cognitive functioning. This includes reasoning, planning, judgment, memory and other processes. Alzheimer’s disease is the most common form of dementia and contributes to between 60 and 80 percent of cases, according to the Alzheimer’s Association.
The Mayo Clinic website describes the symptoms of dementia as confusion, trouble paying attention and concentrating, reduced ability to organize thoughts or actions and a decline in ability to analyze a situation. Patients also experience difficulty deciding what to do next, problems with memory, restlessness and agitation, sudden or frequent urge to urinate or inability to control passing urine, and even depression.
Dr. Kamal Khalafi at Park East nursing facility offered this reporter an opportunity to interview two of his patients, both suffering from dementia, in order to see how much this disease affects a person’s brain. The first patient was a woman; we’ll call her Mrs. Brown. According to Khalafi, Brown has Alzheimer’s-type dementia. They had not yet done a brain scan, but were able to do a preliminary diagnosis based on her behavior.
Upon talking with Brown, it was almost immediately apparent that she had dementia. The first question was if she knew exactly what kind of dementia she had. Her response, “As far as I know I don’t have any.” In an interview of almost an hour and a half, much was learned about her. She was born and raised in Illinois with her mother, brother and sister. When asked how long she had been living in the nursing home, she said it hadn’t even been a year but, according to Khalafi, she has been there since 2016. She has two sons and was able to remember one of their names, however she could not remember her second son’s name.
Within the time spent talking with Brown, her mood seemed to change. When asked how she liked living at the nursing home, the first time she was asked the question she said that she really enjoyed living there. However, when the same question was asked for the second time she seemed much more agitated and said that she did not enjoy living there. She said that her husband had left her there and had died shortly afterwards. Khalafi later clarified that her husband was on the fourth floor of the same building and she had just seen him recently. She just did not remember. During the conversation she became comfortable with talking, and even complimented the interviewer a few times. Since she was so comfortable, some personal questions were asked, such as, “Would you want to know whether or not you had dementia?” She responded, “Yes” almost immediately, as if knowing what the question was going to be. Before leaving the interviewer asked her what year she thought it was, to which she responded: “Somewhere around the 1920s.” Brown was born on Jan. 30, 1935.
Another interviewee was a gentleman we’ll call Mr. Simmons, who was also suffering from dementia. Simmons was diagnosed with vascular dementia after suffering multiple strokes around the age of 50. When the interviewer walked into his room, he was watching “Murder She Wrote.” It was extremely apparent that Simmons was suffering from some sort of cognitive disease because of his limited speech capability. Simmons, during 1967, was an NFL player for the Denver Broncos. His dementia resulted from excessive concussions as a result of football, according to Khalafi, who said Simmons even filed a lawsuit against the NFL for this reason. Simmons was asked the same question asked of Brown: How long he thought he had been at Park East Nursing Facility? His answer was, “I’ve been here for about two years now.” He seemed extremely happy, and smiled when he answered the questions.
Later Khalafi said that Simmons has been there for almost 15 years. We think of memory loss, but to think about forgetting almost 15 years of your life is quite terrifying.
Dementia patients are not the only ones who suffer. It is important to remember that the family members of dementia patients are also greatly affected. This reporter had the opportunity to interview the family member of a patient with dementia. This person requested to be anonymous, so we’ll call her Mrs. Jones. Jones’ mother was diagnosed in 1998 with dementia that was caused by lack of sufficient amounts of oxygen to her brain. She was given a year at most to live after the diagnosis. However, she lived until 2010.
“The initial prognosis was that she would be a vegetable and unable to ever take care of herself. After many months of being in the hospital and rehab, she was able to move back home with my dad,” Jones explained. However, Jones’ mother needed to go to an adult day care center while her husband was at work. Her husband was her main caretaker, but Jones explains the difficulty of having to watch her mother’s health deteriorate.
“Not only was the memory issue difficult — she would ask the same questions over and over again — my dad would tell me sometimes up to 20 times! — and have some fairly nonsensical conversations — but her demeanor became more childlike,” Jones said.
The patient’s behavior is far from the only problem that arises from the disease. Financial troubles also play a big role in the devastation caused by dementia. In fact, according to the Alzheimer’s Association, the approximate lifetime cost of care for an individual living with dementia in 2018 is $341,840. It is also estimated that 16.1 million Americans provide unpaid care for people with Alzheimer’s or other dementias. These estimated caregivers provided an estimated 18.4 billion hours of care, valued at roughly $232 billion.
When asked if dementia puts a financial strain on the family, Jones answered, “Definitely!” Jones’ family was fortunate that her mom did not have to live in a nursing home; she was able to live at home with day care while her husband was at work. According to Jones, even with her mom living at home with her husband (Jones’ father), there was still financial stress.
“My dad actually ended up retiring two years earlier than planned because it got to the point where the cost of her day time care took up most of his salary and it just wasn’t cost effective to continue working.” With both Jones and her sister living far away, working and having families of their own to take care of, this was the only option left for her family.
Because there is no cure for dementia, the main treatment is medications, which help minimally with decreased cognitive function, according to Schwartz. An example of such a drug is Donepezil, whose brand name is Aricept. This drug is used to improve cognition and behavior of people with Alzheimer’s disease, but unfortunately, it does not stop the progression of the disease. The drug inhibits acetyl cholinesterase, which means it slows down an enzyme, known as acetyl cholinesterase, that breaks down the neurotransmitter acetylcholine. This allows the acetylcholine to remain active longer in the body. Acetylcholine is a neurotransmitter used in the body by motor neurons, so it is involved in movement as well as cognitive functions. Inhibiting the breakdown of this neurotransmitter prolongs the time during which the neurotransmitter affects the body. Donepezil is far from perfect, however. It still has many adverse side effects, such as nausea, diarrhea, vomiting, difficulty sleeping, muscle cramps and loss of appetite. Some studies suggest that Donepezil causes some Alzheimer’s patients to be prone to inappropriate sexual behavior, according to a 2016 article by Eric Luong & Karen Lewis in the Journal of Pharmacy Practice and Research.
Family members of dementia patients put in hours of work taking care of their loved ones who are slowly deteriorating. Not only does this leave emotional damage, it also affects families financially. It’s easy to forget about the family members of patients, but it is important, with dementia in particular, to remember the effect that this disease has on the whole family. One can only imagine how Smith’s son might feel because his own mother can’t remember his name. Simmons’ family might be heartbroken to see their once active and vibrant football star deteriorate in a nursing home. And Jones, who was devastated by watching her mother slowly forget and become progressively less independent. Overall, dementia is a difficult disease to cope with. Not only do patients struggle with their symptoms, but the people who surround them do as well.
References
Abe, Y., Shimokado, K., & Fushimi, K. (2017). Donepezil is associated with decreased in-hospital mortality as a result of pneumonia among older patients with dementia: A retrospective cohort study. Geriatrics & Gerontology International, 18(2), 269–275. doi:10.1111/ggi.13177
Alzheimer’s disease. (2017, December 30). Mayo Clinic. Retrieved from https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447.
Alzheimer’s Disease. (2018, May 02). Medline Plus. Retrieved from https://medlineplus.gov/alzheimersdisease.html
Alzheimer’s Disease & Dementia. (n.d.). Alzheimer’s Association. Retrieved from https://www.alz.org/alzheimers_disease_what_is_alzheimers.asp#research
Alzheimer’s Disease Fact Sheet. (n.d.). Retrieved from https://www.nia.nih.gov/health/alzheimers-disease-fact-sheet
Byszewski, A., Power, B., Lee, L., Rhee, G. G., Parson, R., & Molnar, F. (2017). Driving and dementia: Workshop module on communicating cessation to drive. Canadian Geriatrics Journal, 20(4), 241–245. doi:10.5770/cgj.20.264
Dementia | Signs, Symptoms & Diagnosis. (n.d.). Alzheimer’s Association. Retrieved from https://www.alz.org/what-is-dementia.asp?type=alzchptfooter
Green, K. (2016, November 11). Alzheimer’s disease. Retrieved from https://www.alzheimers.org.uk/info/20007/types_of_dementia/2/alzheimers_disease
Han, S. -, Lee, J., Kim, S. Y., Park, K. W., Chen, C., Tripathi, M., . . . Kubota, N. (2016). Donepezil 23 mg in Asian patients with moderate-to-severe Alzheimers disease. Acta Neurologica Scandinavica,135(2), 252–256. doi:10.1111/ane.12571
Howard, R. (2002). Dementia: Management of Behavioural and Psychological Symptoms. American Journal of Psychiatry, 159(9), 1610–1610. doi:10.1176/ appi.ajp.159.9.1610
Latest Alzheimer’s Facts and Figures. (2018, March 19). Retrieved from https://alz.org/facts/
Luong, E., & Lewis, K. (2016). Donepezil: A case of inappropriate sexual behaviours in dementia. Journal of Pharmacy Practice and Research,46(4), 342–345. doi: 10.1002/jppr.1185
Ma, Y., Ji, J., Li, G., Yang, S., & Pan, S. (2017). Effects of Donepezil on cognitive functions and the expression level of β-amyloid in peripheral blood of patients with Alzheimers disease. Experimental and Therapeutic Medicine. doi:10.3892/etm.2017.5613
Mitchell, S. L. (2015). Advanced Dementia. New England Journal of Medicine, 372(26), 2533- 2540. doi:10.1056/nejmcp1412652
Parkinson’s Disease Research, Education and Clinical Centers. (2007, March 05). Retrieved from https://www.parkinsons.va.gov/consortium/moca.asp
Regier, N. G., & Gitlin, L. N. (2017). Dementia-related restlessness: Relationship to characteristics of persons with dementia and family caregivers. International Journal of Geriatric Psychiatry,33(1), 185–192. doi:10.1002/gps.4705: Restlessness caused by caregivers of dementia patients.
World Health Organization & Alzheimer’s Disease International (2012). Dementia: A public health priority. Retrieved from http://www.who.int/mental_health/publications/dementia_report_2012/en/
