Running head: DEMENTIA AND ITS TOLL

Dementia and Its Toll: The Financial Difficulties of Dementia and

A Significant Way to Improve Quality of Life

Collin Devlin

Global Studies and World Languages Academy at Tallwood High School

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Table of Contents

Abstract……………………………………………………………………………………………3

Introduction………………………………………………………………………………………..4

Literature Review………………………………………………………………………………….5

Limitations………………………………………………...……………………………………....6

Discussion……………………………………………………………………………………....…7

The Financial Difficulties of Dealing With Dementia……………………..………………......9

Alternative Care and Improving Quality of Life……………………………..……………....11

Conclusion………………………………………………………………………………...……..15

References……………………………………………………………………………………….16
DEMENTIA AND ITS TOLL 3

Abstract

This paper goes through the difficulties and misconceptions of dementia, and ways to

help soften the blow. This paper delves extensively into music theory as an option for

“alternative care” for dementia. Music therapy helps to calm or soothe dementia patients and is

an overall great way to help dementia sufferers. However, this idea is not stuck to just

traditional, professional music therapy, music in general--playing, creating, or listening--is very

beneficial to dementia sufferers. This paper also discusses the financial aspects of dementia and

how it is important to prepare for the trials and tribulations of paying for adequate care, as it is

extremely expensive and hard to manage on one’s own. Above all, this paper serves to warn the

readers of the difficulties of dementia, as well as to provide one interesting idea as to how to help

improve quality of life.

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Dementia and Its Toll: The Financial Difficulties of Dementia and

A Significant Way to Improve Quality of Life

Dementia is a serious ailment but is often regarded as just a part of getting old. Dementia

is not normal. Dementia affects more than just the person suffering from it. The victim’s family

and friends suffer too. Dementia needs to be caught early and prepared for extensively.

Otherwise, it can have long-lasting effects that break the hearts of those that surrounded the

victim and wreak havoc on a family’s finances. Dementia is on the rise and its effects are

relentless, it is irreversible and eventually kills, slowly. Dementia bombards the brain until there

is nothing left. But with proper planning and knowledge of the expenses of dementia (financially

and emotionally), people can be prepared for the inevitable, if it chooses to walk their way.
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Literature Review

Most of the content in this paper was found from the websites of major associations like

the American Music Therapy Association and the Alzheimer's Association, along with various

newspaper articles and university magazines.

The American Music Therapy Association website goes into the definition of music

therapy and its uses. It also talks about examples of music therapy and shows actions that may

seem like music therapy, but are not.

A study called “The Temporal Limits of Cognitive Change from Music Therapy in

Elderly Persons with Dementia or Dementia-Like Cognitive Impairment: A Randomized

Controlled Trial” by Robert Bruer, Edward Spitznagel, and Robert C. Cloninger conducts an

experiment to test the extent at which music therapy aids those affected by dementia and

cognitive impairment.

The University of Central Florida had an interesting article in its online magazine that

was used to show the elaborate ways music works in the brain. It was used to show the strong

effect music has on individuals and the variety of ways that it affects humans.

An article from the University of Utah Health by Stacy Kish was also used to show the

effect of music on the brain. It goes over a study conducted by one of the professors at the

university and shows music’s use as a remedy for dementia and Alzheimer’s disease.

An article by Concetta Tomaino, one of the first music therapists, shows her experiences

using music to help those affected by dementia. It is more of a creative writing piece, but it

provides substantial anecdotal evidence of music working as a positive for those afflicted by

dementia.
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Limitations

Research limitations​. The research of alternative medicine in this paper was limited to

music therapy, and strictly music therapy when used for dementia patients and other

“cognitively-impaired” elderly people. The research did not delve into other areas of alternative

or complementary care such as bright light therapy, massage therapy, pet therapy, or art therapy,

nor did the research extend into basic aspects of dementia care, such as diet.

Geographic and demographic limitations.​ The research conducted only focused on the

elderly as they are the group most commonly, and almost exclusively, affected by dementia.

Also, the data collected about the care expenses was exclusively set in the United States.

Personal bias​. The writer has personal connections to those afflicted by dementia and

has noted the mass stress it has caused on himself and others that are affected. The author also is

a musician and has a strong bias towards music and its “healing” capabilities.
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Discussion

Dementia is a general term for a decline in mental ability severe enough to interrupt daily

life (What is dementia? n.d.). Dementia itself is not a disease; rather, it is simply a blanket term

used to describe a group of symptoms of cognitive decline. This being said, dementia can

manifest itself in many different ways, most commonly as Alzheimer’s Disease and Vascular

Dementia (Dementia caused by restricted blood flow to the brain, and in a lot of cases, strokes).

Dementia usually presents itself as memory loss or creates difficulty communicating or

finding words, reasoning, handling complex tasks, planning and organizing, or problem-solving.

Dementia can also cause difficulty with coordination and can cause disorientation. Most types of

dementia are progressive--they tend to slowly get worse. Forgetting where the car keys are can,

over time, turn into forgetting a child’s face. Forgetting the words for “fire extinguisher” can,

over time, turn into forgetting how to speak entirely. Sufferers from dementia in the middle to

late stages can become extremely paranoid and sometimes lash out at the people around them.

They can also undergo vast changes in character and become extremely difficult to help.

Dementia is often referred to as “senility”, and Alzheimer’s as “Old-Timer’s”; this,

however, incorrectly associates dementia and serious cognitive decline as a normal part of aging.

As of right now, it is not normal, but it soon might be. Dementia is on the rise globally, in 2015

there were an estimated 46 million people living with dementia (Dementia statistics n.d.) this

number is expected to almost triple to 131 million people by 2050 (Dementia statistics n.d.). As

the world’s population gets older, due to medical advances and longer lifespans, there is more

room for dementia cases to increase.

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Another contributing factor to the rise of dementia could be the Herpes Simplex Virus.

The Herpes Simplex Virus Type 1 (HSV-1) “could account for 50% or more of Alzheimer’s

disease cases” (Frontiers 2018). This is extremely concerning as, according to John Hopkins

Medicine, “​50 percent to 80 percent of U.S. adults have oral herpes​… ​whether you call it a cold

sore or a fever blister, oral herpes is a common infection of the mouth area that is caused by

herpes simplex virus type 1 (HSV-1).” (Oral Herpes n.d.). And what is even more concerning is

that HSV-1 is not curable. There are treatments to reduce the symptoms and prevent and shorten

outbreaks, but there is no cure.

But one might ask, “How is Herpes related to Alzheimer’s? Doesn’t it just make cold

sores?” Well, the Herpes virus is a virus that likes to lay dormant. It can hide away in a person

for years and never manifest itself, but as the immune system weakens from old age, it can wake

up. Professor Ruth Itzhaki of the University of Manchester, a decorated and well-known scientist

that has researched extensively in defective DNA repair and the role of viruses acting with a

genetic factor in dementia says:

...it enters the brains of elderly people as their immune system declines with age. It then

establishes a latent (dormant) infection, from which it is reactivated by events such as

stress, a reduced immune system and brain inflammation induced by infection oby other

microbes. Reactivation leads to direct viral damage in infected cells and to viral-induced

inflammation. We suggest that repeated activation causes cumulative damage, leading

eventually to Alzheimer’s disease in people with the APOE4 gene (Itzhaki 2018).
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The Financial Difficulties of Dealing With Dementia

Dementia is not just emotionally challenging, as all serious illnesses it presents some very

large financial hurdles. Hundreds of thousands of dollars can be poured into the process of

acquiring quality care. One steep financial hill to climb is the cost of nursing homes. An article

in U.S. News Health, by Emily Mullen and Lisa Esposito (2016) says that “I​n 2016, a private

room cost an average of $253 daily, or more than $92,000 annually, according to a 2016 survey

by Genworth Financial. A semi-private room ran $225 daily, or $82,125 per year. And the

average nursing home stay is… more than two years”.

Rebecca Devlin is a Registered Nurse--and has been for 22 years. She is also the current

financial power of attorney and medical decision-maker over her father who suffers from

moderately-severe vascular dementia. In an interview conducted with her and the author she

talked about some of the financial aspects of her role in her father’s dementia care:

I manage all of his finances now and ensure that he has 24 hour caregivers. While my

father is physically still quite able, his cognitive decline and difficulty with speaking &

comprehending has resulted in significant safety concerns. He has had full time

caregivers for the past two years. At a cost of $14.00/hr, his care is quite expensive.

Fortunately, my father had invested in a long-term care insurance policy which is

covering his caregiver expense monthly. I file those claims for him each month.

The author then asked how this situation would have unfolded if her father had not prepared for

his mental decline, and she replied with:

The cost of his caregivers at approximately $100,000 per year would have been difficult

to manage. I likely would have had to cash in some of his annuities in order to fund the
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caregivers and his living expenses. Unfortunately, cashing in the annuities would reduce

his monthly income. You can see how ultimately care would become unaffordable

within just a couple of years. What we would do at that point, I cannot say.

Along with the huge costs of quality care, large sums of money can be lost to financial

exploitation. People with early stages of dementia, and older people in general, are more likely

to trust scammers over the phone and over the computer, and can lose thousands.

An article by Nick Leiber (2018), an editor for Bloomberg, called “How Criminals Steal

$37 Billion a Year from America’s Elderly” claims that around 5 million Elderly americans fall

to scams and financial exploitation. This financial abuse also is not just from the hands of

scammers, but from “greedy, desperate, or drug addicted relatives and friends”. Also, “seniors

lose as much as 36.5 billion dollars each year” from financial exploitation, but that number is

likely to be “grossly underestimated”. Because, the article says, “For every one case reported to

authorities, as many as 44 are not,” (Leiber 2018).

Mrs. Devlin also reports that her father had trouble with financial exploitation as well.

She says that “​He began to respond to scam mail and scam phone calls and ultimately ended up

losing over $125,000.”​ And when asked if she ever thought that her father would succumb to

scammers she replied with: “​I never imagined my father would have fallen prey to such

nonsense. My father was a brilliant man with a MS in Electrical Engineering. His career was

with the Department of Defense, with specialization in radar communications.” She states that,

historically, her father made wise purchases and “although he contributed money to charitable

organizations, he saved much more than he spent.”

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Alternative Care and Improving Quality of Life

When dementia progresses into the later stages, the patients can become very difficult to

deal with. As they lose memories they are faced with a world that is unfamiliar to them. They

may become paranoid, fearful, angry, or depressed. This typically amplifies as the sun sets; this

“late-day confusion” is known as sundowners syndrome. One way to remedy this and other

symptoms of dementia is through music and music therapy.

Music, in and of itself, is complex, and so are its effects on the brain. According to

professor Kiminobu Sugaya of the University of Central Florida a neurologist studying how

music affects the brain, the brain responds to music in many ways, and in many areas, of the

more important and those pertaining more to this area of study there are the hippocampus (the

memory center of the brain and one of the first areas affected by Alzheimer’s), the cerebellum

(the part of the brain that deals with coordination and muscle memory, and the reason why a

dementia patient might be able to play the piano if they learned while they were young, even if

they can’t remember their loved one’s faces), the nucleus accumbens (a part of the brain that

plays a big role in addiction and is responsible for releasing the “feel-good” stimuli “dopamine”),

the amygdala (the part of the brain that processes emotions; Sugaya says that this part of the

brain is responsible for the feeling of “shivers down one’s spine”), the hypothalamus (which

Sugaya says, “​Maintains the body’s status quo, links the endocrine and nervous systems, and

produces and releases essential hormones and chemicals that regulate thirst, appetite, sleep,

mood, heart rate…”), and the putamen (which Sugaya says, “processes rhythm and regulates

body movement and coordination”). Sugaya says that ​music makes listeners feel pleasure and
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pain, it can reduce seizures, help with Parkinson's Disease, and even improve memory ​(​Music

and the Brain: What Happens When You're Listening to Music n.d.​).

Now that the basics of music’s effect on the brain have been established, the question is

raised: how are these ideas relevant to dementia and how can music be implemented to aid

dementia sufferers? The most professional way music is used as a remedy for dementia is

through music therapy. Music therapy is defined, by the American Music Therapy Association,

as, “The clinical and evidence-based use of music interventions to accomplish individualized

goals within a therapeutic relationship by a credentialed professional who has completed an

approved music therapy program,” (American Music Therapy Association n.d.). AMTA also

explains into further detail some of the ideas behind music therapy:

Music Therapy is an established health profession in which music is used within a

therapeutic relationship to address physical, emotional, cognitive, and social needs of

individuals. After assessing the strengths and needs of each client, the qualified music

therapist provides the indicated treatment including creating, singing, moving to, and/or

listening to music. Through musical involvement in the therapeutic context, clients'

abilities are strengthened and transferred to other areas of their lives. (American Music

Therapy Association n.d.).

AMTA also states that any work done with music for the purposes of healing that is not

performed by a professional, while still admirable, is not music therapy. Some example of these

actions include: Bedside musicians, musicians playing in nursing homes or in hospitals, nurses

playing background music for their patients, or a person with Alzheimer’s listening to their

favorite songs.
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While not technically considered to be music therapy, these actions do have strong therapeutic

value.

Music has been known to calm down dementia patients significantly, especially music

from the patients’ pasts. And playing music for dementia patients and allowing them to engage in

the music and create it, sing, or dance, is a valid “treatment” of dementia. Dr. Concetta Tomaino,

a music therapist that works with people that suffer from neurological decline, says this about her

time working with dementia patients in a nursing home:

At rst, I could barely hear myself play. But after a few minutes, the sound of singing

began to rise above the noise, then dominate it. As I watched, even the silent patients

turned their gaze to me. It was too remarkable a change to assign only to the allure of an

old familiar song. People who had seemed unable to focus became attentive. Residents

whom I knew to have limited cognitive skills had recognized the melody; their voices

found the right words. Some with seemingly uncontrollable repetitive movements now

kept steady time with their hands and feet. (Tomaino 2009)

A study called “The Temporal Limits of Cognitive Change from Music Therapy in

Elderly Persons with Dementia or Dementia-Like Cognitive Impairment: A Randomized

Controlled Trial” by Robert Bruer, Edward Spitznagel, and Robert C. Cloninger (2007) conducts

an experiment to test the extent at which music therapy aids those affected by dementia and

cognitive impairment. Bruer et al. state that the subjects went through an 8-week trial in which,

once a week, they ​were “assigned either to music therapy or a control treatment (age-appropriate

movie). The Mini-Mental State Exam (MMSE) assessed cognition 3 times every week: prior to

the intervention, immediately after the mid-afternoon intervention, and the morning following
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the intervention.” The study showed that the “next-day MMSE test scores in the

dementia-diagnosed subjects assigned to music therapy showed average improvements of 3.69

points compared to the control subjects.” And it was concluded that a “reasonable music therapy

intervention facilitated by a trained and accredited music therapist significantly improved

next-morning cognitive functioning among dementia patients.”

Music therapy is obviously not a cure for dementia or other neurological disorders, once

the music stops the symptoms resume, but Jeff Anderson, MD, PhD, and associate professor in

radiology at University of Utah Health, claims that it may “make the symptoms more

manageable, decrease the cost of care and improve a patient’s quality of life.” (Kish 2018)
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Conclusion

Dementia is a serious problem that is often overlooked. And there are many

misconceptions surrounding it. However, understanding it can help to prepare future generations

to give quality care while the search for a cure continues. By use of music therapy and by just

playing music around dementia sufferers, caregivers and family members can improve cognition

and quality of life. And by preparing for dementia, individuals can save vast amounts of money

and hardship. A solution to dementia may never be found, due to the nature of the disorder, but

with proper planning and execution, the next line of dementia sufferers can be prepared for their

hardships, and dementia care can be improved for the world's current aging incumbents and their

posterity.
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References

American Music Therapy Association. (n.d.). Retrieved from

https://www.musictherapy.org/about/quotes/

Dementia statistics. (n.d.). Retrieved from https://www.alz.co.uk/research/statistics

Frontiers. (2018, October 19). Does herpes cause Alzheimer's?. ​ScienceDaily​. Retrieved

December 13, 2018 from www.sciencedaily.com/releases/2018/10/181019100702.htm

Itzhaki, R. (2018, October 23). Future - There is mounting evidence that herpes leads to

Alzheimer's. Retrieved from

http://www.bbc.com/future/story/20181022-there-is-mounting-evidence-that-herpes-leads-

to-alzheimers

Kish, S. W. (2018, April 27). Music Activates Regions of the Brain Spared by Alzheimer's

Disease. Retrieved from

https://healthcare.utah.edu/publicaffairs/news/2018/04/alzheimer.php

Leiber, N. (2018, May 3). How Criminals Steal $37 Billion a Year from America’s Elderly.

Retrieved from

https://www.bloomberg.com/news/features/2018-05-03/america-s-elderly-are-losing-37-bi

llion-a-year-to-fraud
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Mullen, E., & Esposito, L. (2016, November 16). How to Pay for Nursing Home Costs.

Retrieved from

https://health.usnews.com/wellness/articles/2016-11-16/how-to-pay-for-nursing-home-cost

Music and the Brain: What Happens When You're Listening to Music. (n.d.). Retrieved from

https://www.ucf.edu/pegasus/your-brain-on-music/

Oral Herpes. (n.d.). Retrieved from

https://www.hopkinsmedicine.org/healthlibrary/conditions/adult/infectious_diseases/Oral_

Herpes_22,OralHerpes

Tomaino, C. (2009, May 20). Cognition ~ How Music Can Reach the Silenced Brain.

Retrieved from

https://www.pbs.org/wnet/musicinstinct/mi-blog/cognition-blog/cognition-how-music-can

-reach-the-silenced-brain/31/

What Is Dementia? (n.d.). Retrieved from

https://www.alz.org/alzheimers-dementia/what-is-dementia
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