This document provides information about Alzheimer's disease and dementia. Some key points:
- Alzheimer's disease is the most common form of dementia and causes nerve cell death and brain tissue loss. It is progressive, irreversible, and fatal.
- The first case was identified in 1901 by Alois Alzheimer. The term "Alzheimer's disease" was coined in 1910.
- Risk factors include genetic mutations, age, and lifestyle. The disease develops due to plaques, tangles, and neuronal loss in the brain.
- Symptoms start with mild cognitive decline and progress to severe cognitive and physical impairment. It affects memory, thinking, behavior, and ability to perform daily tasks.
- Over 5 million
2. Dementia is a general term for a decline in mental ability severe
enough to interfere with daily life
Alzheimer's Dementia (AD) is the most common form of
dementia
AD leads to nerve cell death and tissue loss throughout the
brain. Over time, the brain shrinks dramatically, affecting nearly
all its functions.
AD is progressive, irreversible, and ultimately fatal
3. Before AD,
―senile
dementia‖ or
―senility‖ was
seen as a
normal part of
aging
In 1901,
German
psychiatrist and
neurologist Dr.
Alios Alzheimer
identified the 1st
case of AD
Alzheimer’s
diagnosis was
confirmed In
1906 after
performing a
brain autopsy
In 1910,
Psychiatrist
Emil Kraepelin
coined the term
―Alzheimer's
disease‖
4. Mutations on chromosomes 21, 14, and 1 cause familial AD (FAD).
Most cases of FAD have an early-onset (ages 65 0r under)
The root causes ―Young-onset‖ and ―Late-onset AD‖ (ages 65 or
over) is unknown
AD develops from neuritic plaques, neurofibrillary tangles, neuronal
loss, and angiopathy in the brain
It is suspected that a mix of genetic (APOE ε4), environmental, and
lifestyle factors influence a person's risk for developing AD.
Susceptibility genes do not cause the disease by themselves but, in
combination with other genes or epigenetic factors
6. Plaques and Tangles
AD tissue has many fewer nerve cells
and synapses than a healthy brain
(bottom right).
Abnormal clusters of protein
fragments (beta-amyloid) build up
between nerve cells; these are called
plaques.
Dead and dying nerve cells contain
tangles, which are made up of twisted
strands of another protein.
7. An estimated 5.4 million Americans of all ages have AD in 2011
This figure includes 5.2 million people aged 65 and older
200,000 individuals under age 65 who have younger-onset Alzheimer’s
One in eight people aged 65 and older (13 percent) has
Nearly half of people aged 85 and older (43 percent)
An estimated 4 percent are under age 65
6 percent are 65 to 74
45 percent are 75 to 84
45 percent are 85 or older
8. Approximately 53 new cases per 1,000 people aged 65 to 74
Approximately 170 new cases per 1,000 people aged 75 to 84
231 new cases per 1,000 people over age 85
Scientific analysis indicates that dementia incidence may
continue to increase
Annual total number of new cases of Alzheimer’s and other
dementias is projected to double by 2050.
Every 69 seconds, someone in America develops Alzheimer’s
By mid-century, someone in America will develop the disease
every 33 seconds
9. Including psychiatric history and history of cognitive and
behavioral changes
medical and family
history
• Assesses the individual's memory skills, orientation to time and place, and ability to do simple calculations
• Also evaluates the nutrition level and overall condition of the patient
Tests the functionality of the brain and nervous system
Neurological and
Physical Examination
• Evaluates coordination, eye movement, speech and reflexes
• Also look for signs of other conditions that cause brain disorders (previous strokes, brain tumors, fluid accumulation in
the brain, Parkinson's disease, etc.)
Diagnose Alzheimer's disease by ruling out other conditions
Brain Scans and
Laboratory Tests
• Tests for anemia, diabetes, kidney or liver problems, abnormal levels of certain vitamins and thyroid hormones in the
body that can cause dementia
• ECGs look for evidence of seizures and other abnormal brain activity, CT scans and an MRIs look at brain images for
indications of abnormalities (blood clots, strokes and tumors)
10. ―Recently, simple and inexpensive tests have been developed
that can be used by primary care physicians for routine
assessment of patients in the clinic.‖
―Examples of such tests include the Mini-Cog test, the General
Practitioner Assessment of Cognition (GPCOG) and others.‖
―It must be noted, however, that such assessment is valuable
only for identifying people requiring more complete testing; it is
not sufficient to establish a diagnosis of dementia.‖
―The medical community has not yet developed a consensus
regarding which single test is best for routine assessment‖—
alz.org
11. Personality changes and
loss of social skills
Change in sleep patterns,
often waking up at night
Delusions, depression,
agitation
Difficulty performing IADL’s
Difficulty reading or writing
Forgetting details about
current events
Difficulty performing familiar
tasks that take some thought,
but used to come easily
Getting lost on familiar routes
Language problems, such as
trouble finding the name of
familiar objects
Losing interest in things
previously enjoyed, flat affect
Misplacing items
12. Forgetting events in your own
life history, losing awareness of
who you are
Hallucinations, arguments,
striking out, and violent behavior
Poor judgment and loss of ability
to recognize danger
Using the wrong word,
mispronouncing words,
speaking in confusing sentences
Withdrawing from social contact
Problems Understanding
language
Inability to Recognize family
members
Inability to Perform basic
activities of daily living, such as
eating, dressing, and bathing
Incontinence
Swallowing problems
13. Memory loss that disrupts daily
life
Challenges in planning or
problem solving
Difficulty completing familiar
home, work or leisure tasks
Confusion with time or place
Trouble understanding visual
images and spatial relationships
New problems with words in
speaking or writing
Misplacing things and losing
the ability to retrace steps
Decreased or poor judgment
Withdrawal from work or
social activities
Changes in mood and
personality
14. Abuse by an over-stressed
caregiver
Bedsores
Loss of muscle function that
causes inability to move your joints
Infection, such as urinary tract
infection and pneumonia
Other complications related to
immobility
Falls and broken bones
Harmful or violent behavior
toward self or others
Loss of ability to function or
care for self
Loss of ability to interact
Malnutrition and
dehydration
15. Cultural and educational background should be
accounted for in the evaluation of a consumers
level of mental functioning
Individuals from certain backgrounds may be
unfamiliar with the material used in certain tests
of general knowledge, memory, and orientation
The prevalence of different factors that
contribute to the risk of AD varies substantially
across cultural groups
16. Slow the progression of the disease (although this
is difficult to do)
Manage symptoms, such as behavior problems,
confusion, and sleep problems
Adapt the home environment in order to better
perform daily activities
Support family members and other caregivers
There is no cure for AD. The
goals of treatment for AD are to:
17. Drug Treatments used to
treat the symptoms of AD
Drug treatments used to
control aggressive, agitated, or
dangerous behaviors
Donepezil (Aricept)
Rivastigmine (Exelon)
Galantamine (Razadyne)
Memantine (Namenda)
Cognex (Tacrine)
Haloperidol
Risperidone
Quetiapine
These are usually given in very
low doses due to the risk of side
effects
18. Direct-care workers comprise the majority of the formal
(paid) healthcare delivery system for individuals with
AD, including assistance with ADL’s and IADL’s
(bathing, dressing, housekeeping, food preparation etc.)
These workers include nurse aides, home health aides
and personal- and home-care aides
―Their work is difficult, and they typically are poorly paid
and receive little or no training to assume these
responsibilities.‖—alz.org
19.
20.
21. Alzheimer's Association - www.alz.org
Alzheimer's Disease Education and Referral
Center - www.nia.nih.gov/alzheimers
Alzheimer's Disease Research -
www.ahaf.org/alzheimers
Support groups
The following organizations are good resources
for information on Alzheimer's disease:
22. Stage IV: Mild or early-stage AD
Moderate cognitive decline
Stage III: early-stage AD
Mild cognitive decline; AD may be diagnosed in
some, individuals
Stage II: earliest signs of AD
may be normal age-related changes; Very mild
cognitive decline
Stage I: No impairment
normal function
The progression of AD takes approximately 8-
10 years
Stage VII: Severe or late-stage AD
Very severe cognitive decline
Stage VI: Moderately severe or mid-stage AD
Severe cognitive decline
Stage V: Moderate or mid-stage AD
Moderately severe cognitive decline
23. Emotional regulation part of brain
Decreased control over moods and feelings
Logical thought part of the brain
Declining ability to problem solve, grasp concepts,
and make plans
Language processing part of the brain
Diminished capacity to use words correctly
Memory forming part of the brain
Decreased ability to form new memories
Automatic functions part of brain
Affects breathing, digestion, heart rate and blood
pressure.
Balance and coordination part of brain
Loss of ability to ambulate and perform most ADL’s
Memory storage part of brain
Loss of oldest memories
Sensory processing part of brain
Wreaks havoc on senses; sparks hallucinations
24. Brain Changes in AD
A brain without AD
A brain with advanced
AD
How the two brains
compare
25.
26. Instrumental Activities of
Daily Living
Activities of Daily Living
The cognitive capacity to plan,
initiate, and complete ADL’s in
a safe, consistent
(predictable), and efficient
manner may be compromised;
e.g., dressing, bathing,
grooming, and bowel/bladder
control.
May wear multilayer clothing
inappropriately.
Behavioral concerns such as
resistance or combativeness
may impede task completion
(especially true with bathing or
showering activities)
AD may compromise the
ability to perform IADL’s
(drive, manage finances, self-
administer medications, make
a meal, etc.)
The consumer may
experience incidents of:
Getting lost while driving to a
familiar location
Leaving the stove on
Having rapid weight loss
Having a medical crisis because
of poor medication management
having unpaid bills because of
financial mismanagement.
27. Rest and Sleep Education and Work
Among other factors, the
inability to problem solve,
grasp new concepts,
communicate effectively,
and execute more
complex tasks impact
performance in these
areas of occupation
Sleep changes in
Alzheimer’s may include:
Difficulty sleeping
Daytime napping and other
shifts in the sleep-wake
cycle
May experience
―sundowning‖
28. Leisure and Social Participation
With AD, there is a gradual withdrawal from leisure activities due to
an inability to perform or frustration caused by increased cognitive
challenges.
A tendency for occupational deprivation may occur if the activity
demands are not reformed to meet the consumers reduced abilities.
There is a tendency to socially isolate
Language problems such as expressive or receptive aphasia or
agnosia may affect social communication
May desire to hide the disease from former acquaintances.
―Some individuals with dementia show disinhibited behavior, including
making inappropriate comments or jokes, neglecting personal
hygiene, exhibiting undue familiarity with strangers, or disregarding
conventional rules of social conduct.‖ (American Psychiatric
Association, 2000, p.148)
29. Sensory Perceptual Skills Motor and Praxis Skills
Motor skills begin to decline in the
middle stages—especially in the areas
of motor planning, sequencing, and
executing new movements
Cognitive deficits impede motor function.
In the middle to later stages, the risk of
falls increases as the consumer
develops apraxia
Falls may be caused by lack of judgment
in the ability to descend a staircase,
perceptual dysfunction, or failure to set the
brakes on a wheelchair when transferring.
Motor skills in the later stages of the
disease are severely impaired, and the
consumer may require a positioning
evaluation for bed, wheelchair, or Geri-
Chair.
Progressively affected
throughout the course of
Alzheimer's disease.
all sensory areas may be
affected (visual, auditory,
tactile, proprioceptive,
vestibular, olfactory, and
gustatory)
may report visual perceptual
disturbances
may report an aversion to
certain foods or food textures
Astereognosis is not unusual
30. Emotional Regulation
Skills
Cognitive Skills
The primary impact in
performance skills is with
cognitive deficits.
Although the primary cognitive
challenge is memory, clients
also lose executive function,
including:
Judgment
Problem-solving ability
Sequencing
Organizing
Prioritizing
Planning
Initiating
May have a sense of loss and
grieving if the person has a self-
awareness of memory loss.
Can range from mild depression to
overt anger and aggression.
Families may encounter increasing
frustration as the person has
difficulty verbalizing the experience
of memory loss or expressing fears
about the future.
Feelings of confusion may alter
emotions
In the later stages of the disease,
these behaviors may escalate to
aggression or catastrophic
reactions
31. Communication and Social Skills
May lose the ability to interact
This symptom may be manifested as receptive or expressive
aphasia
Agnosia or problems recalling recent events impair the flow
of conversation, and the individual may retreat from group
discussions
May be embarrassed by the challenges of communicating
and may attempt to hide the problem by withdrawing from
social situations
Repeating questions or perseverating on a recent event or
health problem can lead to annoyances for the primary
caregiver
32. Performance patterns are the habits, routines,
rituals, and roles in daily activity.
Habits become strengths that the consumer
can draw from when he or she is no longer
able to remember how to perform.
May have to step down from current roles due
to cognitive declines
Experience a decreased capacity or complete
inability to learn new routines
May become unable to participate in rituals
that are complex and/or more cognitively
demanding
33. Cultural Context Personal Context
Alzheimer's disease is an age-
related disease in that the
greater majority of people in the
early to middle stages of the
disease are in late adulthood
Individuals tend to become
disoriented to person—
becoming confused about their
age, marital status, and family
composition
Younger-onset (before age 65)
poses a particular challenge
because decisions regarding
workforce involvement are
emotional and may negatively
affect self-worth
Alzheimer’s disease may
viewed as normal aging among
Black/African American and
Hispanic/Latino culture
Alzheimer’s disease may be
looked at as ―punishment‖ for
past sins, bad blood or mental
illness
Families may not seek out
services because they do not
wish to bring shame upon the
family
Alzheimer’s disease may be
attributed to ―el mal de ojo‖ –the
evil eye or ―nervios‖ –nerves.
34. Temporal Context Virtual Context
The virtual context can
keep a person safe
within his or her own
home or in a residential
facility.
behavioral issues related
to wandering or exiting
safe areas or potentially
hazardous activities may
require monitoring (home
surveillance system).
Circadian rhythms are
altered due to the
prevalence of
"sundowner's syndrome"
in people with AD
35. Physical Context Social Context
Relationships with spouse,
friends, and caregivers
may become strained
Relationships with systems
(e.g., political, legal,
economic or institutional)
that are influential in
establishing norms, role
expectations, and social
routines may dissolve
Consumer may
experience difficulty
negotiating and navigate
his or her physical
environment due to
increased cognitive
impairment
Lighting, visual contrasts,
colors may affect the
consumers functional level
36. Due to the debilitating nature of AD, values, beliefs, spirituality, body functions, and body structures
that reside in the consumer and influence occupational performance may be compromised
Each client with Alzheimer's disease is a unique individual with a distinct set of underlying factors,
both physical and motivational.
Barriers to optimal performance on the basis of physiological functions of body systems or personal
values and beliefs should be identified by the OT practitioner
The individual may have visual deficits that impede unsupervised community mobility
The person with Alzheimer's may have apraxia that contributes to an unsafe environment but may not
have the cognitive ability to learn to use a mobility support.
A strong belief in self-determination may influence the desire to remain independent, but poor
judgment because of cognitive decline may create an unsafe situation for living alone.
The consumer's desire to pursue engagement in spiritual activities should influence recommendations
in the intervention planning process.
37. MOHO, OA and CMOP
Models of Practice
Cognitive Disabilities
Frame of Reference
With AD, it is paramount to
obtain a measure of the
consumer’s cognitive functional
abilities, or how the consumer
draws from thinking and
memory to organize and
execute daily tasks.
Because of the debilitating and
progressive nature of AD, new
learning is not the focus of the
intervention; rather, caregiver
education, environmental
adaptations, and compensatory
strategies in a family-centered
care approach are
recommended.
Viewing human
occupation using the
concepts of MOHO, OA
and COPM will guide
practitioners in providing
the most comprehensive
treatment interventions
for consumers (both
patients and caregivers)
within the AD population
38.
39. The limitations of having Alzheimer’s Dementia
influence the level and quality of engagement in all
areas of occupation. With more knowledge about this
condition and its limitations, occupational therapy
practitioners can better help these individuals link their
specific abilities with purposeful and meaningful
patterns of engagement in occupations, allowing
participation in desired roles and daily life situations at
home, school, work, and the community. Moreover,
the practitioner will be able to advocate on behalf of
the consumer and help caregivers attain the support
they need to care for this population.
42. Alzheimer's Association. (2012, March 1). Facts and Figures: alz.org/Alzheimer's
Association. Retrieved from alz.org/Alzheimers Association:
http://www.alz.org/
American Occupational Therapy Association. (2008). Occupational Therapy
Practice Framework: Domain & Process 2nd Edition. American Journal
of Occupational Therapy, 62, 625-683.
American Psychiatric Association. (2000). Diagnostic and Statistical Manual of
Mental Disorders, Fourth Edition, Text Revision. Washington, DC.
Bashar, M. R., Yan, L., & Peng, W. (2012). Study of EEGs from Somatosensory
Cortex and Alzheimer's Disease Sources. International Journal Of
Biological & Life Sciences, 8(2), 62-66.
Berrios, G. E. (2004, October 13). Alzheimer's disease: A conceptual history.
International Journal of Geriatric Psychiatry, 5(6), 355-365.
doi:10.1002/gps.930050603
43. Dhikav, V. &. (2011). Potential Predictors of Hippocampal Atrophy in Alzheimer's Disease.
Drugs & Aging, 28(1), 1-11.
Letts, L., Edwards, M., Berenyi, J., Moros, K., O’Neill, C., O’Toole, C., & McGrath, C. (2011,
September/October). Using Occupations to Improve Quality of Life, Health and
Wellness, and Client and Caregiver Satisfaction for People With Alzheimer’s
Disease and Related Dementias. American Journal of Occupational Therapy, 65(5),
497-504. doi:10.5014/ajot.2011.002584
Letts, L., Minezes, J., Edwards, M., Berenyi, J., Moros, K., O’Neill, C., & O’Toole, C. (2011,
September/October). Effectiveness of Interventions Designed to Modify and
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Dementias. American Journal of Occupational Therapy, 65(5), 505-513.
doi:10.5014/ajot.2011.002592
Montine, T., Phelps, C., Beach, T., Bigio, E., Cairns, N., Dickson, D., & Hyman, B. (2012).
National Institute on Aging-Alzheimer's Association guidelines for the
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Notas del editor
Alzheimer's disease (AD) is a progressive neurodegenerative disease which is characterized by decreases in cognitive functions and abilities of daily life activities, behavioral changes and psychiatric symptoms (Özkay, Öztürk, & Can, 2011). The prevalence of AD, causing a significant decrease in individuals’ quality of life and eventually to leading their death, is gradually increasing at an alarming rate. In this review multiple areas of AD and its effects on human occupation are summarized to provide an overview of the occupational therapy process for adults with Alzheimer's disease.
Dementia is a general term for a decline in mental ability severe enough to interfere with daily life (American Psychiatric Association [APA], 2000, p. 154). Alzheimer’s dementia (AD) (the most common form of dementia) is an irreversible, progressive brain ailment that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks of daily living (Alzheimer's Association, 2012).
Before AD, “senile dementia” or “senility” was seen as a normal part of aging. Alzheimer’s dementia was discovered more than 100 years ago by a German physiatrist and neurologist named Alios Alzheimer (Berrios, 2004, p. 357). One of Dr. Alzheimer’s patients died after years of severe memory problems, confusion and difficulty understanding questions. Upon her death, while performing a brain autopsy, the doctor noted dense deposits surrounding the nerve cells (neuritic plaques). Inside the nerve cells he observed twisted bands of fibers (neurofibrillary tangles). In 1910, Emil Kraepelin coined the term “Alzheimer's disease;” the term first appeared in public in print in Kraepelin’s book “Psychiatrie: EinLehrbuchFürStudirende und Aerzte” and has been widely used since (Berrios, 2004, p. 362).
Scientists don’t yet fully understand what causes Alzheimer’s disease, but it has become increasingly clear that it develops because of a complex series of events that take place in the brain over a long period of time (Dhikav, 2011). Neurofibrillary tangles, neuritic plaques, neuronal loss, and amyloid angiopathy in the brain. The destructive aspects include neurochemical deficits that disrupt cell-to-cell communications, abnormal synthesis and accumulation of cytoskeletal proteins (e.g., tau), loss of synapses, pruning of dendrites, damage through oxidative metabolism, and cell death. Mutations on chromosomes 21, 14, and 1 cause familial AD (Berrios, 2004; Bashar, Yan, & Peng, 2012). Susceptibility genes do not cause the disease by themselves but, in combination with other genes or epigenetic factors, modulate the age of onset and increase the probability of developing AD. i.e., it is a combination of genetic, environmental, and lifestyle factors that influence a person's risk for developing the disease (http://www.alz.org).
Picture taken from alz.org
Picture taken from alz.org
An estimated 5.4 million Americans of all ages have Alzheimer’s disease in 2011. This figure includes: 5.2 million people aged 65 and older 200,000 individuals under age 65 who have younger-onset Alzheimer’s.One in eight people aged 65 and older (13 percent) has Alzheimer’s disease. Nearly half of people aged 85 and older (43 percent) have Alzheimer’s disease. Of those with Alzheimer’s disease, an estimated 4 percent are under age 65, 6 percent are 65 to 74, 45 percent are 75 to 84, and 45 percent are 85 or older (Alzheimer's Association, 2012).
The estimated annual incidence (rate of developing disease in a one-year period) of Alzheimer’s disease appears to increase dramatically with age, from approximately 53 new cases per 1,000 people aged 65 to 74, to 170 new cases per 1,000 people aged 75 to 84, to 231 new cases per 1,000 people over age 85. Analyses indicate that dementia incidence may continue to increase. Because of the increase in the number of people over 65 in the United States, the annual total number of new cases of Alzheimer’s and other dementias is projected to double by 2050. Every 69 seconds, someone in America develops Alzheimer’s; by mid-century, someone in America will develop the disease every 33 seconds (Alzheimer's Association, 2012).
Medical ExaminationA probable Alzheimer's disease diagnosis is made through the process of elimination. The first step in detecting Alzheimer's disease is to undergo a complete medical evaluation by a physician (Özkay et al., 2011). Both the individual and family members will be interviewed to provide a complete picture of the patient's medical history and the level of his current physical and mental functioning. The physician looks at the individual's memory skills, his understanding of time and place, and his ability to do simple calculations. The physician also evaluates the nutrition level and overall condition of the patient (Bashar et al., 2012).Neurological ExamIf Alzheimer's disease is suspected after the medical evaluation, the patient will usually be referred to a neurologist to test the functionality of her brain and nervous system (http://www.alz.org). The evaluation will test coordination, eye movement, speech and reflexes. The physician will also look for signs of other conditions that cause brain disorders, such as previous strokes, brain tumors, fluid accumulation in the brain and Parkinson's disease (Dhikav, 2011).Laboratory TestsSeveral laboratory tests may be ordered to diagnose Alzheimer's disease by ruling out other conditions. Blood counts will be analyzed to look for anemia, diabetes and kidney or liver problems (http://www.alz.org). Testing will also look for abnormal levels of certain vitamins and thyroid hormones in the body that can cause dementia. The patient may undergo an EEG (electrocardiogram) to look for evidence of seizures and other abnormal brain activity. A CT (computerized tomography) scan and an MRI (magnetic resonance imaging) may be conducted to look at images of the brain for indications of brain abnormalities such as blood clots, strokes and tumors (Bashar et al., 2012).
Information from alz.org
Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging, and the development of AD; does NOT interfere with daily life. Symptoms of MCI include: difficulty performing more than one task at a time; difficulty solving problems; forgetting recent events or conversations; and taking longer to perform more difficult activities (http://www.alz.org). However, to qualify as having Alzheimer’s “these cognitive deficits must be sufficiently severe to cause impairment in occupational or social functioning and must represent a decline for a previously higher level of functioning” (APA, 2000, p. 148).
As the AD becomes worse, symptoms are more obvious and interfere with the ability to engage in self-care (Özkay et al., 2011). Symptoms can include: change in sleep patterns, often waking up at night; delusions, depression, agitation; difficulty doing basic tasks, such as preparing meals, choosing proper clothing, and driving; difficulty reading or writing; forgetting details about current events; forgetting events in your own life history, losing awareness of who you are; hallucinations, arguments, striking out, and violent behavior; poor judgment and loss of ability to recognize danger; using the wrong word, mispronouncing words, speaking in confusing sentences; withdrawing from social contact (http://www.alz.org). People with severe AD can no longer understand language, recognize family members, and perform basic ADL’s. Incontinence and swallowing problems are other symptoms that may occur with AD (Özkay et al., 2011).
Information from: http://www.alz.org/national/documents/checklist_10signs.pdf
Factors brought on by AD that could contribute to problems with primary support group, problems related to the social environment, educational problems, occupational problems, housing problems, economic problems, and problems with access to health care services may include: abuse by an over-stressed caregiver; bedsores; loss of muscle function that causes inability to move joints; and infection, such as urinary tract infection and pneumonia; other complications related to immobility; falls and broken bones; harmful or violent behavior toward self or others; loss of ability to function or care for self; loss of ability to interact; and malnutrition and dehydration (Letts, et al., 2011; http://www.alz.org).
Cultural and educational background should be accounted for in the evaluation of a consumer’s level of mental functioning. Individuals from certain backgrounds may be unfamiliar with the material used in certain tests of general knowledge, memory, and orientation. The prevalence of different factors that contribute to the risk of AD varies substantially across cultural groups (APA, 2000, p. 138).
Medicines are used to help slow down the rate at which symptoms become worse. The benefits from these drugs are typically small (http://www.alz.org). The consumer and his/her family may not notice much of a change. There is no cure for AD. The goals of treatment are to: slow the progression of the disease (although this is difficult to do); manage symptoms, such as behavior problems, confusion, and sleep problems; adapt the home environment in order to better perform daily activities; and support family members and other caregivers (Dhikav, 2011).
Drug Treatments used to treat the symptoms of AD include Donepezil (Aricept), Rivastigmine (Exelon), Galantamine (Razadyne), Memantine (Namenda), and Cognex (Tacrine). Drug treatments used to control aggressive, agitated, or dangerous behaviors may also be necessary (e.g., Haloperidol, Risperidone, Quetiapine) and are usually given in very low doses due to the risk of side effects (Özkay et al., 2011).
Direct-care workers comprise the majority of the formal (paid) healthcare delivery system for individuals with AD, including assistance with ADL’s and IADL’s (bathing, dressing, housekeeping, food preparation etc.). These workers include nurse aides, home health aides and personal- and home-care aides. “Their work is difficult, and they typically are poorly paid and receive little or no training to assume these responsibilities.”—alz.org. Support groups ( e.g., Alzheimer's Association - www.alz.org, Alzheimer's Disease Education and Referral Center - www.nia.nih.gov/alzheimers, Alzheimer's Disease Research - www.ahaf.org/alzheimers) are encouraged (Alzheimer's Association, 2012).
Chart from alz.org
Chart from alz.org
Information from:http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
The slow, fairly predictable progression of AD symptoms is attributed to the manner in which the plaques and tangles course through and invade areas of the brain. The plaques and tangles first form in the hippocampus, the part of the brain where memories are formed. Destroying this part of the brain, AD terminates the ability to remember recent events or conversations (http://www.alz.org). From the hippocampus, the plaques and tangles invade the Language processing center of the brain. This accounts for the language difficulties experienced by the individual. Next, the plaques and tangles move to the front of the brain, where logical thought takes place. At this juncture, marked declines in the ability to problem solve, grasp concepts, and make plans become observable. The plaques and tangles then make their way to the emotional regulation section of the brain—causing the individual to become labile or “emotionally incontinent.” Thereafter, the sensory processing part of the brain is invaded. This event wreaks havoc on the senses and spark hallucinations (http://www.alz.org; Dhikav, 2011; Bashar et al., 2012). The plaques and tangles then reach the part of the brain responsible for storing memories. Once this happens, the individual loses their oldest and most precious memories. Towards the late stages of the disease, the cerebellum, responsible for coordination and balance, is destroyed—leading to an inability to perform basic ADL’s. Finally, AD begins to destroy the brainstem, the part of the brain that controls automatic functions such as circadian rhythm, digestion, breathing and heart rate—eventually leading to death, typically by causing the individual to develop pneumonia (Bashar et al., 2012; http://www.alz.org).
Picture from alz.org
Instrumental activities of daily living.AD may compromise the ability to perform IADL’s (drive, manage finances, self-administer medications, make a meal, etc.). The consumer may experience incidents of getting lost while driving to a familiar location, leaving the stove on, having rapid weight loss, having a medical crisis because of poor medication management, and/or having unpaid bills because of financial mismanagement (American Occupational Therapy Association, Inc. [AOTA], 2010). In the early stages of AD concerns about the consumer’s ability to perform tasks in this area of occupation are typically raised by family members and/or close friends (Thinnes & Padilla, 2011; Padilla & Jensen, 2011; Montine, et al., 2012).Activities of daily living.The cognitive capacity to plan, initiate, and complete ADL’s in a safe, consistent (predictable), and efficient manner may be compromised; e.g., dressing, bathing, grooming, and bowel/bladder control (AOTA, 2008). The consumer may be able to Don simple clothing items such as a sweater, but may wear multilayer clothing inappropriately. Behavioral concerns such as resistance or combativeness may impede task completion (this is especially true with bathing or showering activities) (Thinnes & Padilla, 2011; Montine, et al., 2012).
Rest and sleep.Sleep changes in Alzheimer’s may include, difficulty sleeping, daytime napping and other shifts in the sleep-wake cycle, and “sundowning—an onset of increased agitation and restlessness that occurs during the late evening or at night (http://www.alz.org). Along with bowel and bladder control, information about sleep–rest cycles is paramount in making informed decisions about residential settings for the consumer. Studies suggest that this area of occupation has one of the greatest effects on family decisions regarding home versus residential placement (Thinnes & Padilla, 2011; Padilla & Jensen, 2011; Montine, et al., 2012; http://www.alz.org).Education and work.Among other factors, the inability to problem solve, grasp new concepts, communicate effectively, and execute more complex tasks impact performance in these areas of occupation (AOTA, 2010). This is especially true for consumers with early/young onset AD (Letts, et al., 2011). The compromised ability to perform satisfactorily in these areas of occupation may result in a profound sense of decreased self-worth and a low quality of life for younger consumers with AD (Padilla, 2011).
With AD, there is a gradual withdrawal from leisure activities due to an inability to perform or frustration caused by increased cognitive challenges. Activities that were formerly easy to do may now seem very difficult, which causes anxiety (AOTA, 2010). Occupational deprivation can occur if the activity demands are not reformed to meet the consumers reduced abilities. Moreover, there may be a tendency to socially isolate, either because of language problems such as expressive or receptive aphasia or agnosia—word-finding problems—, or in an attempt to hide the ailment from former acquaintances; this negatively impacts social interaction (Letts, et al., 2011; Thinnes & Padilla, 2011; Montine, et al., 2012) “Some individuals with dementia show disinhibited behavior, including making inappropriate comments or jokes, neglecting personal hygiene, exhibiting undue familiarity with strangers, or disregarding conventional rules of social conduct.” (APA, 2000, p.148)
Sensory perceptual skills.Sensory and perceptual skills are progressively affected throughout the course of AD. Although each sensory functions may be compromised (visual, auditory, tactile, proprioceptive, vestibular, olfactory, and gustatory), the deficits vary depending on the individual. Astereognosis—an inability to identify objects by touch—may also occur (AOTA, 2010). The degree and type of sensory impairment may be correlated to the area of the brain that is most affected (Montine, et al., 2012; Bashar, Yan, & Peng, 2012; Thinnes & Padilla, 2011).Motor and praxis skills.Motor skills typically begin to decline in the middle stages—especially in the areas of motor planning, sequencing, and praxis skills. Motor function impediment is caused by cognitive deficits. In the middle to later stages, the risk of falls increases as the consumer develops apraxia—the inability to motor plan (AOTA, 2010). Falls may be caused by lack of judgment in the ability to descend a staircase, perceptual dysfunction, or failure to set the brakes on a wheelchair when transferring (Montine, et al., 2012; Bashar, Yan, & Peng, 2012; Thinnes & Padilla, 2011). Motor skills in the later stages of AD are severely impaired, and the consumer may require a positioning evaluation for bed, wheelchair, or Geri-Chair (Padilla, 2011). In the presence of comorbidities, the consumer may experience these declines in performance in these areas during earlier stages of the disease (Letts, et al., 2011).
Emotional regulation skills.When diagnosed early, the consumer typically has a sense of loss and grieving if the he or she has a self-awareness of memory loss (Letts, et al., 2011). Emotional reactions may vary from mild depression to overt anger and aggression. Some behaviors may be manifesting underlying feelings of confusion or fear which the consumer is unable to verbalize effectively. Family is also affected, experiencing rising frustration as the consumer’s symptoms worsen. Later in the disease, AD affects the consumer’s ability to regulate his or her emotions effectively (Letts, et al., 2011; http://www.alz.org).Cognitive skills.The primary impact in performance skills is with cognitive deficits. Although the primary cognitive challenge is memory, clients also lose executive function, including: judgment, problem-solving ability, and sequencing, organizing, prioritizing, planning, and initiating (AOTA, 2010). For instance, in the middle stages of AD, the consumer may be perplexed by the command "get ready for church." By contrast, the caregiver may offer a coat, initiate donning, and the client will continue through completion (Montine, et al., 2012; Bashar, Yan, & Peng, 2012; Thinnes & Padilla, 2011).
Communication and social skill deficits vary greatly among people with AD. Albeit some individuals maintain the ability to hold an organized conversation into the middle stages of AD, others lose the capacity for social interaction early in the disease (http://www.alz.org). This symptom may be manifested as receptive aphasia—problems understanding others—or expressive aphasia—trouble using words and sentences. Agnosia—word finding difficulties—or problems recalling recent events impair the flow of conversation, causing the individual to retreat from group discussions (AOTA, 2010). The person may be embarrassed by the challenges and may attempt to hide the problem by withdrawing from social situations. Repeating questions or perseverating—the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus—on a recent event or health problem can lead to annoyances for the primary caregiver (Montine, et al., 2012; Bashar, Yan, & Peng, 2012; Thinnes & Padilla, 2011).
Performance patterns are the habits, routines, rituals, and roles in daily activity (American Occupational Therapy Association [AOTA], 2008). Habits become strengths that the consumer can draw from when he or she is no longer able to remember how to perform. Even in the later stages of the disease, the consumer may be able to function optimally when he or she is able to draw from early learning in long-term memory and replicate skills that are well rehearsed. Conversely, the individual becomes unable to learn a new routine may be able to carry out former routines successfully (Montine, et al., 2012; Bashar, Yan, & Peng, 2012). The consumer may have to step down from current roles due to cognitive declines. The consumer may also experience a decreased capacity or complete inability to learn new routines and may become unable to participate in rituals that are complex and/or more cognitively demanding (AOTA, Inc., 2010).
Cultural context.Cultural context includes customs, beliefs, activity patterns, behavior standards, and expectations accepted by the society of which the client is a member (AOTA, 2008). For instance, AD may be viewed as normal aging among Black/African American and Hispanic/Latino culture. Further, Alzheimer’s disease may be attributed to “el mal de ojo” –the evil eye—or “nervios” –nerves. Conversely, AD may be looked at as “punishment” for past sins, bad blood or mental illness in certain Eastern cultures. Some families may not seek out services because they do not wish to bring “shame” upon the family (http://www.alz.org). “The expectations, beliefs, and customs of various cultures can affect a client’s identity and activity choices and need to be considered when determining how and when services may be delivered.” (AOTA, 2008)Personal context.Personal context refers to demographic features of the consumer such as age, gender, education, etc. (AOTA, 2008). AD can be considered an age-related disease due to the fact that the greater majority of people in the early to middle stages of the disease are in late adulthood. Younger onset (before age 65) poses a particular challenge because decisions regarding workforce involvement are emotional and affect self-worth (AOTA, 2010; Thinnes & Padilla, 2011). Individuals also tend to become disoriented to person—becoming confused about their age, marital status, and family composition. There are studies that suggest that women are more susceptible to the disease, but these finding are controversial (Alzheimer's Association, 2012). “The client’s personal context affects service delivery by influencing personal beliefs, perceptions, and expectations” (AOTA, 2008).
Temporal context.The temporal context refers to the "experience of time as shaped by engagement in occupations” and “includes stages of life, time of day or year, duration, rhythm of activity, or history” (AOTA, 2008). Circadian rhythms—a daily rhythmic activity cycle, based on 24-hour intervals—are altered due to the prevalence of "sundowner's syndrome" in people with AD. Sundowner’s is a common term used to refer to confusion and agitation that may only appear or become worse in the evening. Altered sleep–wake cycles occur in the middle stages of the disease when daytime becomes confused with nighttime (Alzheimer's Association, 2012).Virtual context.Virtual context refers to interactions in simulated, real-time, or near-time situations absent of physical contact (AOTA, 2008). Behavioral issues related to wandering or exiting safe areas or potentially hazardous activities may require monitoring (AOTA, 2010; Letts, et al., 2011). This external context can provide resources that support or inhibit the consumer’s performance (e.g., access to a computer to communicate with others, or home surveillance system to ensure safety for individuals who are at high risk). The virtual context can keep the consumer safe within his or her own home or in a residential facility.
Physical environment.Physical environment refers to the natural and built nonhuman environment and the objects in them (AOTA, 2008). i.e., it is the primary living space and places that the person frequents during daily activities. The consumer may experience difficulty negotiating and navigate his or her physical environment due to increased cognitive impairment. Lighting, visual contrasts, colors may also affect the consumer’s functional level (AOTA, 2010; Letts, et al., 2011). In order for the consumer to remain at home, versus a residential setting, the physical environment may need to be adapted to provide the precautionary supports for safety and independence.Social environment.The social environment is constructed by the presence, relationships, and expectations of persons, groups, and organizations with whom the client has contact. The social environment may provide resources that support or inhibit the client’s performance (AOTA, 2008). For example: the presence or absence of a paid-caregiver; or the willingness (or lack thereof) of family members, friends or neighbors to provide assistance with weekly or daily tasks (AOTA, 2010; Letts, et al., 2011). Relationships with spouse, friends, and caregivers may become strained. Also, relationships with social systems (e.g., political, legal, economic or institutional) that are influential in establishing norms, role expectations, and social routines may dissolve.
Due to the debilitating nature of AD, values, beliefs, spirituality, body functions, and body structures that reside in the consumer and influence occupational performance may be compromised. Each consumer with AD is a unique individual with a distinct set of underlying factors, both physical and motivational (Thinnes & Padilla, 2011). Barriers to optimal performance on the basis of physiological functions of body systems or personal values and beliefs should be identified by the OT practitioner on a case-by-case, phase-by-phase basis. The individual may have visual deficits that impede unsupervised community mobility (Montine, et al., 2012; Bashar, Yan, & Peng, 2012). The person with Alzheimer's may have apraxia that contributes to an unsafe environment but may not have the cognitive ability to learn to use a mobility support (Letts, et al., 2011). A strong belief in self-determination may influence the desire to remain independent, but poor judgment because of cognitive decline may create an unsafe situation for living alone (AOTA, 2010). The consumer's desire to pursue engagement in spiritual activities should influence recommendations in the intervention planning process.
This guideline does not discuss all possible methods of care, and although it does recommend some specific methods of care, the OT practitioner makes the ultimate judgment regarding the appropriateness of a given intervention in light of a specific consumer's circumstances, needs, and available evidence to support intervention.Model of PracticeNo single theoretical model guides occupational therapy intervention with people with Alzheimer's disease. Moreover, the progressive nature of the disease dictates that occupational therapy intervention occurs at intervals (early, middle, and late stages of AD) over time. The goals of stage-based intervention change based on the needs of the client at each stage of the disease, and with it, the models of practice and frames of reference. Generally, viewing human occupation using the concepts of MOHO, OA and COPM will guide practitioners in providing the most comprehensive treatment interventions for consumers (both patients and caregivers) within the AD population. Frame of ReferenceWith regard to frames of reference used for individuals with AD, it is paramount to obtain a measure of the consumer’s cognitive functional abilities, or how the consumer draws from thinking and memory to organize and execute daily tasks. Because of the debilitating and progressive nature of AD, new learning is not the focus of the intervention; rather, caregiver education, environmental adaptations, and compensatory strategies in a family-centered care approach are recommended. Thus, the cognitive disabilities frame of reference would be an apt choice. However, client factors such as the presence of comorbidities coupled with the progression of the disease will affect the overall decision of the practitioner.