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Meghan Nadzam

ENGL 101

Dr. Cassel

10 November 2018

Working with Dementia: Alzheimer’s, Causes, and the Burden on Those that Care

For years now, my grandpa, who my family all calls Papa Dave, has had many medical

problems. Blood clotting, cancer, Alzheimer’s, skin deterioration, and dementia made their long-

lasting appearances on the doctor’s clipboard. My mother and her siblings, all spread out over

the country, make attempts to see their father every month. I try my best to do the same. His

memory cannot go back to its highest point in life, and we all watch time pass before he will

forget our names, no longer travel for the holidays, or even eat his food. When I see him, I

always prepare myself emotionally for whatever comes. I swear every moment with him, for

each time our family visits his apartment, I have no idea if it will be that last. I think about him

every day. Thankfully, he still gives off his loving spirit and sense of humor, two things that

bring the old Papa Dave right back to us all. Hearing his laugh breaks my heart and seeing that

breaking action in other people’s eyes makes it even worse. Our family just celebrated Papa

Dave’s eightieth birthday. Each person spoke about how much they love Papa, and each speech,

no matter what it covered, had everyone in tears. Those speeches will echo in my heart forever,

and Papa’s laugh will ring out alongside it.

While witnessing Papa Dave’s disease and seeing how it affects my family, I want to

analyze the concept of confusing dementia with Alzheimer’s. Dementia is a chronic disorder of

the mind marked with memory disorders, personality changes, and impaired reasoning and

caused by other diseases and conditions. Alzheimer’s disease, a type of dementia, appears as the
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most common form and affects a wider range of

age than dementia does. This disease begins at

ages as early as thirty and has longer durations

instead of stages like dementia. Dementia creates

permanent damage that develops and worsens in

each stage (Oten). Because most people confuse

dementia with Alzheimer’s disease, they do not

recognize scientists, experts and their research.

This research presents dementia as a memory

disease of the mind, shows what its causes and

Figure 1. Dementia v.s. Alzheimer's chart comparison (Oten)
symptoms are, describes the emotional toll it takes on

family members and caregivers.

Because dementia remains so sporadic in symptomatic ways and causes, the older adults

who develop dementia display a wide variety of psychological and cognitive changes. Jonathan

Graff-Radford, M.D. and his associates at the Mayo Foundation for Medical Education and

Research (MFMER) state that “Alzheimer’s disease is the most common cause of a progressive

dementia in older adults, but there are a number of causes of dementia” (Graff-Radford). Another

person who lives with the dementia patient usually notices cognitive changes. These changes

include confusion, difficulty doing complex tasks, difficulty with problem-solving, or basic

memory loss. Physiological changes include personality changes, depression, paranoia, and

agitation. The cause of dementia “involves damage of nerve cells in the brain, which can occur in

several areas of the brain. Dementia affects people differently, depending on the area of the brain

infected” (Graff-Radford).
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In another study done by Camilla Ferrari and her associates in the Department of

Neuroscience, Psychology, Drug Research and Child Health at the University of Florence in

Florence, Italy, Ferrari found three basic causes of dementia through blood tests and brain

neuroimaging: predominant gray matter atrophy, white matter disease, and basal ganglia

pathologies. While gray matter atrophy causes lysosomal storage disorders, caused by the

inability to store materials needed for metabolism in cells, and the shrinkage of frontal and

temporal brain lobes, white matter disease causes vascular dementia and spinal tissues, and basal

ganglia pathologies occur due to rapid accumulation of metal pathologies like iron and copper

that lead to Wilson’s and Fahr’s diseases (Ferrari).This data that Ferrari gives just takes the

research Graff-Radford completed into another step and by using today’s top technology to

complete specific tests.

Also, Graff-Radford acknowledges the concept that some types of dementia are

irreversible, or progressive dementias. These include Alzheimer’s, vascular dementia, Lewy

body dementia, Huntington’s disease, traumatic brain injury, or Parkinson’s disease. Alzheimer’s

disease involves plaques and tangles, which “are clumps of a protein called beta-amyloid, and

tangles are fibrous tangles made up of tau protein” (Graff-Radford).

However, some conditions similar to dementia have treatments making things reversible.

These include immune disorders, nutritional deficiencies, reactions to medications, or brain

tumors.

With such a broad spectrum of causes, dementia has the ability to affect millions

worldwide. One cannot prevent dementia from occurring but stimulate precautions into

preventing further damage to one’s diseased body. Graff-Radford lists unchangeable risk factors

such as age, family history, impairment, and Down syndrome linked with early-onset
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Alzheimer’s disease. Factors that one can monitor, however, include alcohol use, depression,

diabetes, smoking, being physically active, maintaining a healthy diet, and lowering one’s blood

pressure. Despite all the terrible factors that lean one towards being diagnosed with dementia,

one can take precautions and cause awareness of occurring events in order for early diagnosis,

learning about one’s status in dementia, and continuing to live with loved ones (Graff-Radford).

Having a disease of the mind does not just affect one’s relationships with family

members. It also affects the workspace and those one collaborates with. Wendy Mitchell,

memoir author, was diagnosed with early-onset Alzheimer’s in July of 2014 at the age of fifty-

eight. Mitchell had been working as an administrator at the British National Health Service for

more than 20 years and not even close to retiring. Mitchell had been experiencing pieces of

short-term memory loss, such as forgetting simple words and struggling to concentrate

(Mitchell). She understood her needs and her disease because she worked in the health system,

and also because in the country of Britain, over 40,000 individuals under 65 have dementia

(Mitchell). But because she was such a capable employee, Mitchell and her coworkers made

adjustments to her typical routine. Instead of talking to her face-to-face about an issue, associates

would email Mitchell with questions that Mitchell could ponder over and come back to, not

having to give a direct answer. “They created a color-coded Post-it note system, with each color

denoting a different team member, to help me remember whom to get back to on which project”

(Mitchell). Today, Mitchell no longer works for the British National Health Service, but she

published a memoir on her struggles with Alzheimer’s and works with dementia charities and

support organizations. “I try to communicate all that we patients still have to contribute to

society” (Mitchell). Mitchell’s story shows that with effort and the help from those around, a
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dementia patient can make their disease work for them. Family members and caregivers create

similar atmospheres like Mitchell’s for their patients.

Because of love, time, and the constant work, the burden caregivers carry on their

shoulders while managing a dementia patient can become immense and draining, but also

rewarding. Henry Brodaty, MD and DSc, professor at the Primary Dementia Collaborative

Research Centre and School of Psychiatry at the University of New South Wales in Sydney,

Australia, argues that family caregivers of people with dementia are crucial to the life of their

patients. “The typical profile of a dementia caregiver is a middle-aged or older female child or

spouse of the person with dementia. In the US, at least 60% of unpaid caregivers are wives,

daughters, daughters-in-law, granddaughters, and other female relatives” (Brodaty).

Brodaty worked alongside Marika Donkin, BA-Psychology of the Academic Department for Old

Aged Psychiatry at the Prince of Wales Hospital in Sydney, Australia, who strongly believes that

positive and negative effects of being a caregiver exits, but the more common negativities

receive influence from burden and strain. Duty, guilt, social pressures, love, spiritual fulfillment,

or even greed can motivate caregivers (Brodaty). Caregivers who focus on their sense of duty

“are more likely to resent their role and suffer greater psychological distress than caregivers with

more positive motivations” (Brodaty). Because the negative affects seem to attract the most

attention, caregiving associates itself with unpleasant and pleasant feelings and opinions. The

authors also access the many types of effects dementia causes caregivers. Caregivers have lives

outside of taking care of those with dementia, such as employment, child care, relationships, and

education. Brodaty introduces the concept of “role captivity” and how that the burden causes

immense strain, physiological and physical morbidity, isolation, financial problems, anxiety, and
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depression. Brodaty and Donkin then come together collectively to devise three hypotheses on

why caregiving could be linked to dementia duration.

“The adaptation hypothesis posits that over time caregivers adapt to the demands

of their role. [The] “wear and tear” hypothesis proposes that the longer a caregiver

remains in his or her role, the more likely negative outcomes are to occur. [The]

sequestration hypothesis proposes that caregivers experiencing greater stress are more

likely to admit their demented relative to a nursing home” (Brodaty).

Caregiving proves itself as a life-altering job, and sometimes an individual cannot take the

pressure, so they have the option of placing their loved on in a home specialized to their disease

or medical problem. Family caregivers are necessary for the support of loved ones with

dementia, despite the burdens and trifles they go through each day.

Keeping their patient active and physically healthy remains one of the key jobs for a

caregiver. Mobility and going from a sitting to a standing position, according to William

Varnam, back care manager at Nottinghamshire Healthcare NHS Trust in Nottingham, England,

will help aid movement and being active. Varnam conducted an experiment that questioned his

therapy staff and had them do careful tryouts on their patients. His questions came up as when

assisting a person with dementia, what difficulties do one encounters, and how do that person

overcome these difficulties (Varnam)? Each test had categories and each therapy member rated

the categories, some of them being related to sound, equipment, the environment or location, and

focused instruction. Each test revolved around an intervention, or a type of movement exercise to

slowly raise the patient from sitting to standing. A lot of factors had to go into each intervention

type, such as the nature of each patient, their mood, and physical abilities. The rate of success

with each patient was then recorded based on level of improvement, A being major
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improvement, B being moderate, C being slight, D being no difference, E being making things

worse, and F being not sure of a change (Varnam). No particular intervention proved most

successful, but the use of interventions clearly positively influenced the patients based on the

knowledge of the patient and their caregivers. In Varnam’s experiments, connections are made

between the physical tolls dementia takes on a person and how badly those patients need

assistance with daily actions, especially if dementia affected the patient for long periods of time.

Knowing that Papa Dave’s wife, Charlene, cares for him every day, I can only imagine

the stress she must carry. The pressure to keep him active despite his arched back and inability to

walk long distances must exhaust the couple. I think back to the days I visited him in his condo

and how I could have helped more or lengthened my patience with him on the harder days.

Because I originally thought dementia was another name for Alzheimer’s, I now know the

difference, the symptoms and causes, and how truly troubling and painful to this all is for

Charlene and the four children of Papa Dave to watch.

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Bibliography

Brodaty, Henry, and Donkin, Marika. “Family caregivers of people with dementia.” PubMed

Central (PMC: Dialogues Clin Neurosci), vol. 11, no. 2, June 2009, pp. 217-228,

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181916/. Accessed 31 October 2018.

Ferrari, Camilla, et al. “The Diagnosis of Dementias: A Practical Tool Not to Miss Rare

Causes.” Neurological Sciences, vol. 39, no. 4, Apr. 2018, pp. 615–627. EBSCOhost,

doi:10.1007/s10072-017-3206-0. Accessed 29 October 2018.

Graff-Radford, Jonathan, M.D. “Dementia.” Mayo Clinic, Mayo Foundation for Medical

Education and Research (MFMER), Aug. 2, 2017, https://www.mayoclinic.org/diseases-

conditions/dementia/symptoms-causes/syc-20352013. Accessed 29 October 2018.

Mitchel, Wendy. “I Had Alzheimer’s. But I Wasn’t Ready to Retire.” The New York Times, 7

September 2018, page A21, https://www.nytimes.com/2018/09/07/opinion/early-onset-

alzheimers-work.html. Accessed 31 October 2018.

Oten, Mage. Dementia v.s. Alzheimer’s. 2018. ayucar.

http://ayucar.com/Ny1zdGFnZXMtb2YtZGVtZW50aWEtY2hhcnQ/. Accessed 11

November 2018.

Varnam, William. “How to Mobilise Patients with Dementia to a Standing Position.” Nursing

Older People, vol. 23, no. 8, Oct. 2011, pp. 31–36. EBSCOhost,
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ezproxy.wittenberg.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&d

b=a9h&AN=66478774&site=ehost-live. Accessed 29 October 2018.