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Consider the article “Effects of Alzheimer Disease on Patients and Their Family” (Grabher, 2018). Discuss the three most pertinent pieces of information from the article that you feel have the greatest impact on the life of an individual diagnosed with Alzheimer’s Disease. Cite the article and text within your post and include references.
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Effects of Alzheimer Disease on Patients and Their Family
Barbara J. Grabher, BS, CNMT, RT(N)
Grabher Consulting and Specialty Services, Abingdon, Maryland, and Life Molecular Imaging, Inc., Boston, Massachusetts
CE credit: For CE credit, you can access the test for this article, as well as additional JNMT CE tests, online at https://www.snmmilearningcenter.org. Complete
the test online no later than December 2021. Your online test will be scored immediately. You may make 3 attempts to pass the test and must answer 80% of the
questions correctly to receive 1.0 CEH (Continuing Education Hour) credit. SNMMI members will have their CEH credit added to their VOICE transcript automatically;
nonmembers will be able to print out a CE certificate upon successfully completing the test. The online test is free to SNMMI members; nonmembers must pay $15.00
by credit card when logging onto the website to take the test.
The diagnosis of Alzheimer disease (AD) affects not only the
patient but the entire family and their supporting caregivers.
Understanding the stressors that affect these individuals
enables us to provide the support and care they need to
remain happy and healthy despite living with the diagnosis of
AD. This continuing education article examines the epidemic
of AD in the United States today and its emotional, psychologic, and financial effects. It discusses ways that caregivers
can reduce their own stress as they struggle to balance family
responsibilities with caring for their loved one with AD. Although
there is no cure for AD, research suggests there are ways to
reduce the risk of developing AD; these will be explored here
as well.
Key Words: Alzheimer disease; Alzheimer disease statistics; effects
of Alzheimer disease on patient; Alzheimer disease caregivers
J Nucl Med Technol 2018; 46:335–340
DOI: 10.2967/jnmt.118.218057
A
lzheimer disease (AD) was discovered on November
25, 1901, when Dr. Alois Alzheimer examined and observed a patient named Auguste Deter at the Frankfurt
Asylum for the Insane and Epileptic. The 46-y-old patient
had strange behavioral symptoms, including a loss of shortterm memory. In April 1906, at the age of 51, Mrs. Deter
died. Alzheimer had obtained her patient records, and her
brain was brought to him in Munich. Along with 2 Italian
physicians, Alzheimer used cell-staining techniques to
identify amyloid plaques and neurofibrillary tangles within
the cortical gray matter of the brain. On November 3, 1906,
he gave the presentation that first linked these pathologic
findings with the clinical symptoms of presenile dementia (1).
Today, over 110 y later, AD is a devastating disease that
affects more than 46.8 million people worldwide. This
Received Jul. 18, 2018; revision accepted Aug. 17, 2018.
For correspondence or reprints contact: Barbara J. Grabher CNMT, RT(N),
Grabher Consulting and Specialty Services, 3113 Pouska Rd., Abingdon, MD
21009.
E-mail: [email protected]
Published online Aug. 23, 2018.
COPYRIGHT © 2018 by the Society of Nuclear Medicine and Molecular Imaging.
number is expected to double every 20 y, reaching 75 million
in 2030 and 131.5 million in 2050 (2). AD currently affects
over 5.7 million people in the United States and is expected
to grow at a rate similar to the worldwide statistics mentioned
above, nearly tripling by 2050 to a projected 14 million cases
in people 65 y old or older (3). Currently, 5.5 million people
are at least 65 y old—3.3 million women and 2 million
men, and the prevalence of AD in people 65 y old or older
is 1 in 10 (3). Among AD patients, 81% are 75 y old or
older, 15% are 65–74 y old, and 4% are younger than 65 y
(4). Approximately 200,000 individuals with AD are under
the age of 65 y and have what is called younger-onset or
early-onset AD (5). The statistics related to AD and its
effect on the patient, family, and entire health-care system
are staggering (5): AD is the sixth leading cause of death
in the United States; 1 in 3 seniors die with AD, every
65 seconds someone in the United States develops AD,
and AD kills more people than do breast cancer and prostate cancer combined. In 2018, more than 16.1 million
caregivers will provide an estimated 18.4 billion hours of
unpaid care, yet AD costs caregivers more than just their
time. Some family members spend more than $10,000 a
year caring for someone with AD. For some families, caring for an AD patient means missing a vacation, but for
others it may mean going hungry. In 2018, AD and other
dementias will cost the nation $277 billion.
Because our population is living longer—sometimes referred to as the Silver Tsunami (6)—the number of people
with AD will continue to grow, putting increasingly more
strain on family and caregivers emotionally and on the
entire health-care system financially. New strategies, support groups, and even AD communities need to be created
for patients and caregivers. The impact of the diagnosis on
caregivers is multifaceted, ranging from economic concerns
to concerns about having to alter their lifestyle to care for
the patient. Being aware of their concerns, needs, and feelings allows the community to help them cope.
RISK FACTORS FOR DEVELOPING THE DISEASE
There are both controllable and uncontrollable risk factors
for AD, with age being the leading known uncontrollable one
(7). Most people are diagnosed at the age of 65 y or older (3).
EFFECTS OF AD ON PATIENT AND FAMILY • Grabher
335
Another uncontrollable risk factor is family history. Individuals who have a first-degree relative (parent or sibling) with
the disease are more likely to develop it than those who do
not, and those who have more than one first-degree relative
with the disease are at even higher risk (3). Genetics is also
an uncontrollable risk factor, as there are 3 genes linked to
early-onset AD and a fourth gene, apolipoprotein E, linked
to late-onset AD (7). A final uncontrollable risk factor is sex,
with more women than men having AD and other dementias.
Almost two thirds of Americans with AD are women. Also,
among people 71 y old or older, 16% of women have AD or
other dementias, compared with 11% of men (3). There are
several possible reasons why more women than men have
AD and other dementias, the biggest being that women live
longer than men, on average, and that older age is the greatest risk factor for AD (3).
Controllable risk factors for AD include high cholesterol
levels, high blood pressure, lack of regular exercise, and lack
of intellectually stimulating activities (7).
BENEFITS TO KNOWING A DIAGNOSIS
Knowledge of the diagnosis has value to both the patient
and the family. According to a survey in 2011 (8), 84% of
respondents would want to be told if their loved one had AD,
98% would want a family member exhibiting confusion and
memory loss to see a doctor, and 89% would, themselves,
want to know if they had AD. Cognitive impairment needs to
be diagnosed as early as possible in the disease process. The
value of knowing, especially in the early stages of the disease, is that the patient and family can plan for the future.
The patient has more opportunities to be involved in decisions about current and future living arrangements, personal
care, and financial and legal matters while still having the
ability and the cognition to make such decisions (9). Early
diagnosis also allows patients to receive the maximum benefit from treatment, in addition to being able to remain independent longer and have a better chance of participating
in clinical trials, which can help stabilize, slow, or even
reverse the amyloid plaque buildup in the cortical gray matter of the brain (10). An early and documented diagnosis
leads to better outcomes for individuals with AD and their
caregivers (10).
According to one author (11), ‘‘Dealing with legal and
financial issues is a critical first step after a diagnosis of
AD. Prompt action, before the patient becomes incapacitated, will help the family understand the patient’s wishes.’’
Choosing a lawyer, accountant, and financial planner can be
helpful in addressing the many legal and financial issues to
ensure the patient is cared for and protected. For example,
these professionals can assist with setting up a trust or a
living trust, planning how to finance long-term care, writing
a will or a living will, allocating a guardian or a health-care
proxy, setting up a medical or durable power of attorney,
and planning the estate (11).
336
PAID AND UNPAID COSTS OF CARE
Payments by Medicare and Medicaid for health care,
long-term care, and hospice for people with AD and other
dementias were $150 billion in 2014, $236 billion in 2016,
and are estimated to be $277 billion in 2018 (3,4,12). Although these agencies and private insurers do cover some
of these costs, Medicare does not cover the entire cost of
chronic care. If an AD patient requires chronic care, the
maximum coverage by Medicare is just 150 d and involves
deductibles and copayment for which the patient is responsible (12). In 2017, Medicare beneficiaries aged 65 or older
with AD and other dementias paid $10,589 out of pocket,
on average, for health-care and long-term care services not
covered by other sources (3). AD patients also experience
more hospitalizations than other people the same age, also
increasing the financial burden to patients and family (4).
People with AD or other dementias comprised 29.9% of
individuals in adult day care in 2014, 39.6% of those living
in residential care communities in 2014, 31.4% of those using
the services of home health agencies in 2013, 44.7% of those
in hospice in 2013, and 50.4% of those living in nursing
homes in 2014 (13), all of which cost the patient and
family a significant amount of money. A 2013 article
claimed that AD is one of the costliest chronic diseases to
society (14), and in 2014, the director of the Mayo Clinic
Alzheimer’s Disease Research Center stated that ‘‘If we
don’t get on top of [AD], it will bankrupt the health-care
system’’ (15).
A 2016 report found that those who provide care are 28%
more likely than those who do not to struggle with having
enough money for proper meals (4). Another finding was
that many family members and friends of people with AD
or other dementias make great sacrifices to help provide
care, such as spending money from their savings and retirement accounts, thus jeopardizing their own financial
security. Startlingly, the report also revealed that many
caregivers cut back on basic necessities such as food and
medical care for themselves and their families and did not
know, or had misconceptions about, which expenses Medicare and Medicaid cover, leaving them unprepared to handle the tremendous costs associated with the disease.
Another finding was that caregivers spent an average of
$5,155 of their own money per year to take care of their
relative or friend with AD or another dementia. The annual
out-of-pocket costs ranged from less than $1,000 to more
than $100,000, and it was the spouse or partner who incurred the highest expense—an average of over $12,000 per
year. Adult children spent an average of about $4,800 per
year, with some (16%) spending $10,000 or more. The most
common expenses were for groceries, followed by travel,
medical supplies (e.g., adult diapers), medications, nonmedical in-home care, and in-home health care (4).
An underlying financial burden relating to the care of AD
patients is the hours of unpaid care and the economic value
of caregiving. One report (12) found that in 2013, the 15.5
JOURNAL OF NUCLEAR MEDICINE TECHNOLOGY • Vol. 46 • No. 4 • December 2018
TABLE 1
Hours of Unpaid Care and Its Economic Value (3,4,12)
Parameter
2013
2015
2016
Number of family and other unpaid caregivers
Hours of unpaid care
Hours of care per caregiver per week
Hours of care per caregiver per year
Hourly rate
Total cost
15.5 million
17.7 billion
21.9 h
1,139 h
$12.45
$220.3 billion
15.9 million
18.1 billion
21.9 h
1,139 h
$12.25
$221.3 billion
15.9 million
18.2 billion
21.9 h
1,139 h
$12.65
$230 billion
million family members and other unpaid caregivers of
people with AD or other dementias provided an estimated
17.7 billion hours of care. This number represents an average of 21.9 h per caregiver per week, or 1,139 h per caregiver per year. With this care valued at $12.45 per hour, the
estimated value of this unpaid care was $220.3 billion (12).
In 2015, 15.9 million unpaid caregivers provided an estimated 18.1 billion hours of care, averaging 21.9 h per caregiver per week, or 1,139 h per caregiver per year. At $12.25
per hour, the estimated value of this unpaid care was $221.3
billion. Thus, from 2013 to 2015, the cost of unpaid care
increased by $10 billion. In 2016, 15.9 million unpaid caregivers provided an estimated 18.2 billion hours of care
valued at $230 billion. In a newly released 2018 report,
over 16 million unpaid caregivers provided an estimated
18.4 billion hours of care, which at $12.61 per hour (a
2.9% increase over the 2015 hourly rate) is valued at
$232 billion, an increase of almost 5% from 2016 to
2018 and a total increase of over $12 billion in 5 y
(3,4,12). These numbers are staggering and have had a
big impact on caregivers, their families, and the economy,
and unfortunately the numbers continue to grow. Table 1
summarizes these data for 2013, 2015, and 2016.
SOURCES OF STRESS TO FAMILY CAREGIVERS
Demographic Stress
caregivers had to go in to work late, leave early, or take
time off; that 16% had to take a leave of absence; and that
18% had to change from full-time to part-time work, a 5% increase in 2017 over 2016 data (3,4,12). Other work-related
issues caregivers experienced were having to take a less demanding job (13%), having to give up working entirely (9%),
receiving a warning about performance or attendance (7%),
and having to retire early (6%) (3,8).
Time-Related Stress
Another stressful issue for families and caregivers is
finding enough time to visit a loved one who is in a skilled
care facility. If the loved one is cared for at home, the issue
may be finding substitute caregivers when primary caregivers
have other demands on their time. Issues may also arise with
balancing the time needed to care for the patient with the
time needed to care for self or other family members (12).
According to one report (12), almost 23% of all caregivers
are ‘‘on-duty’’ caregivers spending 24 h a day, 7 d a week,
caring for the loved one. Interestingly, 59% of those who
were not on-duty caregivers felt as if they were. The report
also stated that women are 2.5 times more likely than men to
provide on-duty care in the late stage of disease.
Caregiver intervention is an important area where more
support is needed. If the health and well-being of caregivers
are neglected, those they care for will suffer as well. The
Figure 1 illustrates caregiver demographics (4). A 2014 report indicated that because of demographic changes in the U.S.
population (i.e., parents of dependent minors are older than in
the past, and the U.S. population is aging), we now have
something called the sandwich-generation caregiver, or a middle-aged person who simultaneously cares for dependent minor children and aging parents (12). The report found that 30%
of AD and dementia caregivers had children under 18 y old
living with them and that 8%–13% of households in the
United States had sandwich-generation caregivers. Such caregivers experience many challenges, such as limited time, energy, and financial resources, when balancing the care of both
aging parents and dependent children. Because of these unique
challenges, such caregivers may experience increased anxiety
and depression and a decreased quality of life (12).
Work-Related Stress
Family caregivers also experience work-related stress, such
as the need to adjust their work schedule to accommodate
caring for their loved one. Reports show that 57% of
FIGURE 1. Caregiver demographics (8).
EFFECTS OF AD ON PATIENT AND FAMILY • Grabher
337
Once a patient is diagnosed with AD, they too have stress
related to their new diagnosis. The most common reasons
patients give for increased stress are fears about forgetting
their loved ones, becoming a burden to their family, losing
their independence, and not being able to take care of
themselves (12). In the early stages of disease, finances are
the greatest cause of stress to patients, who may wonder
whether they will have enough money to pay for their care.
Physical and Emotional Stress
Caring for AD patients creates emotional stress regardReports from 2014 and 2018 (3,4,12) cite both physical
and emotional stress as being other burdens placed on fam- less of whether the care takes place at home or in a facility.
ilies (Fig. 2); 47% of women and 24% of men considered Data from 2014 indicated that 76% of family caregivers for
their caregiving role to be physically stressful, and 62% of people with AD or other dementias agree—either somewomen and 52% of men considered their caregiving role to what or strongly—that it is neither right nor wrong for a
be emotionally stressful. Adding to the stress is that 51% of family to decide to admit a family member to a nursing
caregivers have no medical experience, creating difficulty home. Yet many such caregivers feel guilt and emotional
upheaval and have difficulty adapting to the admission (e.g.,
with making decisions or knowing what to do next.
In a recent survey (Barbara J. Grabher, unpublished data, they have mixed emotions relating to what to do; their brain is
May 2017), the top 5 stressors for caregivers were found to telling them to place their loved one in an Alzheimer facility
be financial strain, fear that their loved one will get lost, but their heart does not want to put their loved one in a nursing
effects on family vacations, caregiver stress of balancing home facility) (12).
Family members of AD patients can experience many
all their family responsibilities with the responsibilities of
taking care of their loved one, and reduced time with their other types of feelings, including sadness, discouragement, aloneness, anger, and hope, as well as fatigue and
family.
Three of the biggest issues family members face are a lack depression (17). Different people handle stress and emoof privacy, sleep deprivation, and the lone-soldier syndrome— tions differently, with some being able to express how they
a sense that they have to bear the full burden of taking care of feel whereas others cannot. Emotions about the loved one
their loved one. A fourth issue is not anticipating what is with AD may be mixed. A family member may feel both
coming next for their loved one, and a fifth is trying to man- love and dislike for the person at the same time or may
age the overwhelming task of taking care of their loved one want to care for the person at home while simultaneously
(16). Incontinence, heavy lifting, and wandering behaviors in wanting to hand over care to a facility. Embarrassment
someone with AD are usually the most stressful issues; both about how the patient behaves in public may also be a
urinary incontinence and fecal incontinence are among the concern; however, this feeling might fade if the experience
is shared with other family members, who can then share
leading causes of nursing-home placement (16).
similar experiences of their own (17).
Support groups are helpful in such situations by decreasing the feeling of
being alone.
Two feelings that many family
members have are helplessness and
guilt. The feeling of helplessness may
stem from having to take the loved one
to multiple physicians before finally
getting an accurate diagnosis of the
cognitive impairment (17). Feelings of
guilt may arise from many sources:
family members may regret being impatient with the patient, losing their
temper, or spending time with friends
instead of with the patient. Other
forms of guilt arise from wishing they
did not have the responsibility of caring for their loved one, from considering placement in a facility, or from
having to limit the patient’s indepenFIGURE 2. Physical and emotional burdens of AD caregivers and family members dence regarding driving, living alone,
or finances (17).
(3,4,12).
desired outcome of caregiver intervention is successful
management of stress and depression, which in turn delays
the need to admit the AD patient to a nursing home (4).
Some examples of intervention include counseling, support
groups, case management support, and respite care (4), all
of which can help caregivers be their best for the patient.
338
JOURNAL OF NUCLEAR MEDICINE TECHNOLOGY • Vol. 46 • No. 4 • December 2018
mercury, and toxic chemicals; and practicing whole-body detoxification.
Dietary modifications are also important (19). Foods should be low in
unhealthful fats, high in fiber, high in
antioxidants, organic, and not genetically modified. Healthful oils that can
reduce the risk of AD include coconut
oil, cold-pressed extra virgin olive oil,
flaxseed oil, avocado oil, hempseed
oil, and macadamia nut oil. Fruits particularly helpful in preventing AD are
red grapes, cherries, strawberries, blueberries, raspberries, pomegranates, oranges, and plums. Particularly helpful
vegetables are spinach, kale, broccoli,
beets, Brussels sprouts, peppers, alfalfa
sprouts, leafy greens, and eggplant.
Consuming fresh cold-water fish high
in omega-3 fatty acids is beneficial, as
is eating nuts high in vitamin E (almonds, pecans, and walnuts) and drinking herbal green tea. Sugar and wheat
FIGURE 3. 10 Requests from an Alzheimer’s Patient (20) and Caregiver’s 10
should be eliminated.
Commandments (21).
Finally, supplements such as vitamins
B12, C, E, and D3, ginkgo biloba, magALTERNATIVE CARE
nesium, curcumin, resveratrol, silicon, acetyl-L-carnitine,
The United States needs to come up with more alterna- docosahexaenoic acid, and a B-complex vitamin can help retives to family members and nursing homes for AD patient duce the risk of AD.
care. An example in The Netherlands is the tiny village of
Hogewey, which includes tree-lined streets, shops, restau- Compassion
rants, a movie theater, a hairdresser, and 23 apartments
It is important to remember what the patient is going
carefully crafted to feel like home to the over 150 residents through, as well as what the caregiver is going through.
with AD. However, Hogewey is not a real village; it is a nursing Love and compassion by all are key to allowing those living
home. The supermarket cashier, the restaurant manager, and the with AD to remain happy and healthy. This disease is not
other village workers are all incognito nursing home staff, easy for anyone involved—the patient, the caregiver, or the
specially trained to care for people with dementia. Most of family.
the residents think it is a real village (18).
Figure 3 provides compassionate reminders from the perThe United States has AD facilities but nothing like spective of the AD patient and from the perspective of the
Hogewey. Facilities such as AD villages serve several AD caregiver. Carefully reading these reminders and allowpurposes: making the patients feel they are living a normal ing the words to sink in will help inspire compassion in
life, providing a safe environment, giving families peace those who are currently traveling the AD journey or who may
of mind, and caring for patients in an environment different someday embark on that journey.
from the institutionalized atmosphere of a typical nursing
home. Settings such as Hogewey have also been shown to
reduce the need for medication and put patients more at CONCLUSION
ease and because they feel at home (18).
AD is a growing, devastating disease that affects not just
the patient but the entire family, as well as putting a large
RECOMMENDATIONS FOR PATIENTS
cost burden on the entire U.S. health-care system. The
AND CAREGIVERS
disease is a tremendous source of stress to caregivers, not
Prevention of AD
only financial stress but physical, emotional, time-related,
Lifestyle modifications can help ward off AD (19). Such work-related, and demographic stress. We need to find a cure
factors include maintaining a proper weight, blood pres- for AD, we need to increase education on its risk factors and
sure, blood glucose, and gut microbiome; getting daily on lifestyle modifications that may keep it at bay, and we
exercise and sun exposure; socializing and engaging in need alternatives to the use of family members and nursing
mental activities; staying hydrated; avoiding aluminum, homes as care providers. But perhaps most important is that
EFFECTS OF AD ON PATIENT AND FAMILY • Grabher
339
we need to remember love and compassion toward those who
travel the AD journey.
DISCLOSURE
Barbara Grabher is an employee of Life Molecular Imaging and is the chief consultant and president of Grabher Consulting and Specialty Services. No other potential conflict of
interest relevant to this article was reported.
ACKNOWLEDGMENTS
I thank Marybeth Farrell and Kathy Thomas for inviting
me to contribute to the Journal of Nuclear Medicine Technology and Maria Costello for providing guidance for part
of this article.
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JOURNAL OF NUCLEAR MEDICINE TECHNOLOGY • Vol. 46 • No. 4 • December 2018
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