A Alzheimer’s Alzheimer’snewagecare.net/wp-content/uploads/2019/09/Understanding... ·...
Transcript of A Alzheimer’s Alzheimer’snewagecare.net/wp-content/uploads/2019/09/Understanding... ·...
3rd Quarter 2019 In-Service Training
An Alzheimer’sdisease and relateddementias services.UnderstandingAlzheimer’sDisease andDementia
Understanding
Memory LossWhat to do when you have trouble remembering
From the National Institute on Aging
Introduction
We’ve all forgotten a name, where we put our keys, or if we locked the front door. It’s normal to forget things once ina while. However, forgetting how to make change, use the telephone, or find your way home may be signs of a more serious memory problem.
This booklet will help you
learn about:
• the difference between mild forgetfulness
and more serious memory problems
• causes of memory problems and how they
can be treated
• how to cope with serious memory problems
Tips about using the booklet
Use the Table of Contents to help you find things quickly.
Also, we put some medical terms in bold, such as brain
scan. You can find how to say these words and what they
mean in the “Words to know” section on page 24.
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Mary’s story
Mary couldn’t find her car keys. She looked on the
hook just inside the front door. They weren’t there. She
searched in her purse. No luck. Finally, she found
them on her desk. Yesterday, she forgot her neighbor’s
name. Her memory was playing tricks on her. She was
starting to worry about it.
She decided to see her doctor. After a complete check-up,
her doctor said that Mary was fine. Her forgetfulness was
just a normal part of getting older. The doctor suggested
that Mary take a class, play cards with friends, or help out
at the local school to help her memory.
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Differences between
mild forgetfulness and
more serious memory problems
What is mild forgetfulness?
It is true that some of us get more forgetful as we age. It
may take longer to learn new things, remember certain
words, or find our glasses. These changes are often signs
of mild forgetfulness, not serious memory problems.
See your doctor if you’re worried about your
forgetfulness. Tell him or her about your concerns. Be
sure to make a follow-up appointment to check your
memory in the next
6 months to a year. If you think you might forget, ask a
family member, friend, or the doctor’s office to remind
you.
What can I do about mild forgetfulness?
You can do many things to help your memory. Look at the
list on page 6 for some helpful ideas.
Here are some ways to help
your memory:
Learn a new skill.
Volunteer in your community, at a school, or at your
place of worship.
Spend time with friends and family.
Use memory tools such as big calendars, to-do lists,
and notes to yourself.
Put your wallet or purse, keys, and glasses in the
same place each day.
Get lots of rest.
Exercise and eat
well.
Don’t drink a lot of alcohol.
Get help if you feel depressed for weeks at a time.
Spending time with friends and family may help your memory.
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What is a serious memory problem?
Serious memory problems make it hard to do everyday
things. For example, you may find it hard to drive, shop,
or even talk with a friend. Signs of serious memory
problems may include:
• asking the same questions over and over again
• getting lost in places you know well
• not being able to follow directions
• becoming more confused about time, people, and places
• not taking care of yourself—eating poorly, not
bathing, or being unsafe
What can I do about
serious memory problems?
See your doctor if you are having any of the problems
listed above. It’s important to find out what might be
causing a serious memory problem. Once you know the
cause, you can get the right treatment.
Talk with your doctor if you think you have a serious memory problem.
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Al’s story
Al didn’t know what was happening. He was having a hard
time remembering things. He wasn’t eating or sleeping
well and didn’t want to see friends. He was confused
and irritable.
His wife was worried. She took him to the doctor.
It turned out that Al was having a bad reaction to one of
his medicines. Once his doctor changed the medicine, Al
felt more like himself.
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Serious memory problems—
causes and treatments
Many things can cause serious memory problems, such as
blood clots, depression, and Alzheimer’s disease. Read
below to learn more about causes and treatments of serious
memory problems.
Medical conditions
Certain medical conditions can cause serious memory
problems. These problems should go away once you
get treatment. Some medical conditions that may
cause memory problems are:
• bad reaction to certain medicines
• depression
• not eating enough healthy foods, or too few
vitamins and minerals in your body
• drinking too much alcohol
• blood clots or tumors in the brain
• head injury, such as a concussion from a fall or accident
• thyroid, kidney, or liver problems
Treatment for medical conditions
These medical conditions are serious. See your
doctor for treatment.
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Gloria’s story
Gloria was feeling sad all the time. She just wanted
to sleep all day and night. She was becoming really
forgetful, too. Gloria’s nephew Bob was afraid something
was very wrong. He took her to see a doctor. The doctor
said she had depression and needed to take medicine and
see a counselor.
After 3 months, Bob could see the change in his aunt. She
was eating and sleeping better. Gloria also was spending
more time with friends and doing volunteer work.
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Emotional problems
Some emotional problems in older people can cause
serious memory problems. Feeling sad, lonely, worried, or
bored can cause you to be confused or forgetful.
Treatment for emotional problems
• You may need to see a doctor or counselor for
treatment if these feelings last for more than 2 weeks.
Once you get help, your memory problems should get
better.
• Being active, spending more time with family and
friends, and learning new skills also can help you feel
better and improve your memory.
Being active can help you feel better.
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Joe’s story
Joe was almost 74. He was still working part-time.
He noticed that he was becoming more forgetful at work.
He felt frustrated that it was so hard to find the right
words to describe something. His boss told him that he
missed a couple of meetings. He started to wonder if he
had a serious problem.
Joe’s wife took him to get a complete health check-up.
His doctor told Joe that he had mild cognitive impairment,
also called MCI. The doctor said there was no treatment for
MCI, but that he would keep a close watch on Joe’s
memory and thinking skills. Joe felt better knowing there
was a reason for his memory problems.
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Mild cognitive impairment(pronounced mild kog-ni-tiv im-pair-ment)
As some people grow older, they have more memory
problems than other people their age. This condition
is
called mild cognitive impairment, or MCI. People with MCI
can take care of themselves and do their normal activities.
MCI memory problems may include:
• losing things often
• forgetting to go to events or appointments
• having more trouble coming up with words than
other people of the same age
Your doctor can do thinking, memory, and language tests
to see if you have MCI. He or she also may suggest that
you see a specialist for more tests. Because MCI may be
an early sign of Alzheimer’s disease, it’s important to see
your doctor or specialist every 6 to 12 months. See page
15 for more about Alzheimer’s disease.
Treatment for MCI
• At this time, there is no proven treatment for MCI.
Your doctor can check to see if you have any changes
in your memory or thinking skills over time.
• There are things you can do that may help you stay
healthy and deal with changes in your thinking. The
list on page 6 suggests some ways to help your
memory.
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Anna’s story
Anna’s mother was still going strong at 85. She kept
busy with friends and church activities. But lately, Anna
had noticed changes. Her mother was becoming more
forgetful and confused. Also, she was spending a lot
of time alone in her house. One day, her mom got lost
on her way home from shopping.
Anna knew it was time to get help. She took her mom to
the doctor. Anna was really upset to learn that her mom
had early-stage Alzheimer’s disease. It’s been tough, but
learning about treatment choices, what to expect in the
future, and how to live with the disease has helped the
whole family. They’re taking one day at a time.
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Alzheimer’s disease(pronounced Allz-high-merz duh-zeez)
Alzheimer’s disease causes serious memory problems.
The signs of Alzheimer’s disease begin slowly and get
worse over time. This is because changes in the brain
cause large numbers of brain cells to die.
It may look like simple forgetfulness at first, but over time,
people with Alzheimer’s disease have trouble thinking
clearly. They find it hard to do everyday things like
shopping, driving, and cooking. As the illness gets worse,
people with Alzheimer’s disease may need someone to
take care of all their needs at home or in a nursing home.
These needs may include feeding, bathing, and dressing.
Treatment for Alzheimer’s disease
• Taking certain medicines can help slow down some
symptoms, such as memory loss, for a time. The
medicines can have side effects and may not work for
everyone. Talk with your doctor about side effects or
other concerns you may have.
• Other medicines can help if you are worried,
depressed, or having problems sleeping.
See page 22 to learn where families can go for
help and information.
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Sam’s story
Sam was an active 70-year-old who felt healthy. He
couldn’t believe it when, all of a sudden, he couldn’t
remember what somebody told him 5 minutes ago.
He went for a check-up and had some tests, including a
brain scan. After reviewing the test results, the doctor told
him that his forgetfulness was caused by small strokes.
These strokes had damaged some of his brain cells.
She said his problem was called vascular dementia.
The doctor told Sam that she couldn’t cure his memory
problems. But, she could give him medicine to control his
high blood pressure. This medicine also would lower his
chances of having more strokes.
Vascular dementia(pronounced vas-kue-ler duh-men-shuh)
Many people have never heard of vascular dementia. Like
Alzheimer’s disease, it is a medical condition that causes
serious memory problems. Unlike Alzheimer’s disease,
signs of vascular dementia may appear suddenly. This is
because the memory loss and confusion are caused by
changes in the blood supply to the brain, often after a
stroke. If the strokes stop, you may get better or stay the
same for a long time. If you have more strokes, you may
get worse.
Treatment for vascular dementia
You can take steps to lower your chances of having
more strokes. These steps include:
• Control your high blood pressure.
• Treat your high cholesterol.
• Take care of your diabetes.
• Stop smoking.
Get your blood pressure checked each time you see the doctor.
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Help for serious
memory problems
What can I do if I’m worried about
my memory?
See your doctor. If your doctor thinks your memory
problems are serious, you may need to have a complete
health check-up. The doctor will review your medicines
and may test your blood and urine. You also may need to
take tests that check your memory, problem solving,
counting, and language skills.
In addition, the doctor may suggest a brain scan.
Pictures from the scan can show normal and problem
areas in the brain. Once the doctor finds out what is
causing your memory problems, ask about the best
treatment for you.
Doctors can do brain scans to check for some causes of
memory problems.
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What can family members do to help?
If your family member or friend has a serious memory
problem, you can help the person live as normal a life as
possible. You can help the person stay active, go places,
and keep up everyday routines. You can remind the
person of the time of day, where he or she lives, and
what is happening at home and in the world. You also
can help
the person remember to take medicine or visit the doctor.
Some families use the following things to help
with memory problems:
big calendars to highlight important dates and
events lists of the plans for each day
notes about safety in the home
written directions for using common household
items (most people with Alzheimer’s disease can
still read)
Family members and friends can help people with serious memory
problems live as normal a life as possible.
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What you need to know
There are differences between normal forgetfulness
and more serious memory problems.
It’s important to understand the causes of
memory problems and how they can be
treated.
You can get help for mild and serious memory problems.
See your doctor if you are worried about your
memory. It’s important to find out what is causing
your memory problems.
It’s important to find out what is causing your memory problems.
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Where can I get
more information?
Contact the following organizations to learn more about
memory loss. They can give you information about
support groups and services, and publications on brain
health, and Alzheimer’s disease and related dementias.
They can also give you information about research
centers and clinical trials and studies.
Alzheimer’s and related Dementias
Education and Referral (ADEAR) Center1-800-438-4380
www.alzheimers.go
v
The Alzheimer’s and related Dementias Education and
Referral (ADEAR) Center offers information on diagnosis,
treatment, patient care, caregiver needs, long-term care,
and research related to Alzheimer’s disease and related
dementias. Staff can refer you to local and national
resources. The Center is a service of the National Institute
on Aging, part of the Federal Government’s National
Institutes of Health.
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Alzheimer’s Association1-800-272-3900 (toll-free)
1-866-403-3073 (TTY/toll-free)
www.alz.org
The Alzheimer’s Association is a nonprofit organization
offering information and support services to people with
Alzheimer’s disease and their caregivers and families. The
Alzheimer’s Association also sponsors research. Call or
visit their website to find out where to get help in your
area.
Alzheimer’s Foundation of America 1-866-232-8484 (toll-free)
www.alzfdn.org
This foundation serves people with dementia and
their caregivers and families. Services include a toll-
free hotline, publications, and online resources.
Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov
Families often need information about community
resources, such as home care, adult day care, and
nursing homes. Contact the Eldercare Locator to find
these resources in your area. The Eldercare Locator is
a service of the Administration on Aging. It is funded
by the Federal Government.
Creating Dementia capable state in Illinois
Training
for the
Aging
Network
Promoting the sustainability of a dementia-capable system through training on the most common types of dementia and the practical application for staff working in a variety of settings.
6/30/2015
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Preface
CREATING A DEMENTIA CAPABLE STATE IN ILLINOIS
The Illinois Department on Aging, in partnership with other state
agencies, Alzheimer’s Association Chapters, Area Agencies on Aging,
the Illinois Council of Care Coordination Units and other key
stakeholders is expanding a statewide coordinated dementia-capable
system that builds on the service infrastructure currently in place. The
goal of this expansion is to develop and implement a sustainable,
community-based service delivery system in that meets the needs of
individuals with dementia and the needs of their caregivers; a dementia-
capable system. This expansion includes training the Aging Network on
the components of a dementia- capable service delivery system.
The Aging Network in Illinois that cares for individuals with dementia
includes Care Coordinators, Adult Protective Service Workers, in-home
care workers, adult day service workers, Area Agency on Aging staff,
Aging and Disability Resource Center staff, managed care organization
staff and supportive living facility staff. These providers need accurate
information about caring for someone with dementia including the
benefits of early diagnosis, how to address the physical, cognitive,
emotional, and behavioral symptoms of the disease, and how to assist
caregivers as they cope with the physical and emotional aspects of their
caregiving responsibilities. Dementia-specific capabilities within the
direct care workforce need to be enhanced.
With a grant from the Illinois Department on Aging, the Illinois Council
of Care Coordination Units focused on the training component to
promote the sustainability of a dementia-capable system. This training
manual is a piece of this training effort to strengthen the dementia-
capability of a workforce providing care to people with dementia.
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ACKNOWLEDGEMENTS
This training curriculum was developed by the Illinois Department on
Aging and the Illinois Council of Care Coordination Units. Excerpts were
taken from a previous edition of the Alzheimer’s Disease Training
Manual also developed by the Illinois Council of Care Coordination
Units.
The training manual was written by:Julie Farmer, LCSW
Program Director, Alternatives [for
the Older Adult] Co-Chairperson
of the Education Committee,
ICCCU
Darby Morhardt, Ph.D., LCSW
Cognitive Neurology and Alzheimer’s
Disease Center Northwestern
University, Feinberg School of
Medicine
Thank you to the following individuals for their contributions and editorial review:
Jeanette Piper, Senior Services of Will County
Co-Chairperson of the Education Committee, ICCCU
Teva Shirley, Southwestern Illinois Visiting
Nurses Association President-Elect of the
ICCCU
Kathy Weiman, Alternatives
[for the Older Adult] Past
President of the ICCCU
Marsha Nelson, Shawnee Alliance
for Seniors Member of the
Education Committee of the
ICCCU
Debbie Bailey, Senior Services of
Central Illinois Member of the
Education Committee of the
ICCCU
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SECTION 1
WHAT IS DEMENTIA?
The term dementia is not a specific disease. Dementia is used to describe the
gradual deterioration of “intellectual” abilities and behavior that eventually
interferes with customary daily living activities. Customary daily living activities
include balancing the checkbook, keeping house, driving the car, involvement
in social activities, and working at one’s usual occupation. There may also be
changes in personality and emotions. Contrary to popular belief, dementia is
not a normal outcome of aging, but is caused by diseases that affect the brain.
Dementia influences all aspects of mind and behavior, including memory,
judgment, language, concentration, visual perception, temperament and social
interactions. The Diagnostic and Statistical Manual (DSM 5) states that at least
one or more of the following cognitive domains must be significantly impaired
to be considered dementia (or neurocognitive disorder):
∙ Complex Attention (sustained attention, divided attention,
selective attention, processing speed)
∙ Executive Function (planning, decision making, working,
memory, responding to feedback/error correction, overriding
habits/inhibition, mental flexibility)
∙ Learning and Memory (immediate memory, recent
memory, very long term memory)
∙ Language (expressive language including naming, word
finding, fluency, and grammar, and syntax; and receptive
language)
∙ Perceptual-motor
∙ Social cognition (recognition of emotions, theory of mind;
often described as a change in personality)
While there are at least a hundred types of dementias, this Training
Manual will provide additional information on the 4 most common
types of dementia in order of prevalence:
● Alzheimer’s Disease - 11% of the population affected (5 million) and
up to 60 to 80% of those over age 65
● Vascular Dementia - up to 20% of all dementias
● Lewy Body Dementia (LBD) - 20% of individuals
with dementia Includes sub-diagnoses of:
Dementia with Lewy Bodies
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Parkinson’s Disease Dementia
Frontotemporal Dementia (FTD) - 2%-10% of all
dementias) Includes sub-diagnoses of:
Behavioral variant frontotemporal dementia
Pick’s Disease
Primary Progressive Aphasia Corticobasal
Syndrome Progressive supranuclear palsy
Frontotemporal dementia with parkinsonism Frontotemporal dementia
with amyotrophic lateral sclerosis
Other less common types of dementia include:
∙ Dementia Pugilistica due to traumatic head injury (moderate head
trauma is related to twice the risk of developing AD or other
dementias as someone who had no head trauma)
[2014 Alzheimer’s Disease Facts and Figures p. 11]
∙ HIV associated dementia (HAD)
∙ Normal pressure hydrocephalus (excess cerebrospinal fluid
accumulates in brain’s ventricles)
∙ Huntington’s Disease (symptoms usually show up between ages 30-50)
∙ Creutzfeldt-Jakob Disease (a prion disease, is rare with sudden onset)
∙ Wernicke-Korsakoff Syndrome (severe deficiency of thiamine
commonly caused by alcohol misuse)
∙ Mixed Dementia (2 or more dementias)
Dementia is caused by damage to brain cells which disrupts the ability of those cells
to communicate with one another. The area of the brain that is damaged
determines the diagnosis and progression of symptoms. Not all symptoms happen
to all people and most dementias progress over time. Medications may help with
managing various symptoms for a period of time.
Frequently, increased difficulty with memory and other areas of cognition are key
symptoms which will prompt an evaluation by a physician. Unless the individual or
family member expresses concern, a physician will not always be able to perceive a
problem during the early
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stages. Individuals may not display any memory or cognitive deficits in general
conversation or during a short visit in the physician’s office. As well, typical
medical tests performed in a routine physical will not identify a cognitive problem.
In the early stages, special evaluations are necessary to demonstrate the
abnormalities. This may include referrals to a Regional Alzheimer’s Disease
Assistance Center or one of their primary provider sites. An assessment will rule
out treatable conditions such as B12 deficiency, depression or abnormal thyroid
function. A patient history will be obtained from someone who knows the person
with dementia well and can identify the changes in behavior. A physical and
neurological evaluation will be completed. A brain scan may be done to look for
evidence of stroke and identify other changes in the brain. Cognitive and
neuropsychological tests will be done, lab tests completed as well as a psychiatric
evaluation to address the possibility of depression.
Risk for Dementia
Age is the primary risk factor for developing dementia. “The number of people
living with dementia could double in the next 40 years with an increase in the
number of Americans who are age 65 or older—from 40 million today to more
than 88 million in 2050.” (National Institutes of Health).
Many individuals with Down Syndrome develop signs of dementia by the
time they reach middle age.
Mild Cognitive Impairment (MCI)Individuals with Mild Cognitive Impairment experience a decline in their usual
cognitive abilities. Symptoms may be noticed by others but may not affect the
individual’s abilities to complete their normal day to day tasks. While individuals
with MCI are at higher risk of developing Alzheimer ’s disease, not everyone with
MCI will develop the disease. “Ten to twelve percent of individuals with this set of
symptoms develop dementia in subsequent years for at least 5 years” (Mace, p.
77). Individuals with MCI may still be able to do their activities of daily living but
may lose things often or forget to go to appointments or have more difficulty
finding the right word in a conversation.
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Dementia Stages
The Global Deterioration Scale (GDS), developed by Dr. Barry Reisberg, et. al. provides an overview of the stages of cognitive function for those suffering from a primary degenerative dementia such as Alzheimer’s disease.*
Stage 1: No Cognitive Impairment
Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview.
Stage 2: Very Mild Cognitive Decline
Individuals at this stage feel as if they have memory lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co- workers.
Stage 3: Mild Cognitive Decline
Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include:
▪ Word-finding or name-finding problems noticeable to family or close associates
▪ Decreased ability to remember names when introduced to new people
▪ Performance issues in social or work settings noticeable to family, friends or co-workers
▪ Reading a passage and retaining little material
▪ Losing or misplacing a valuable object
▪ Decline in ability to plan or organizeStage 4: Moderate Cognitive Decline
At this stage, a careful medical interview detects clear-cut deficiencies in the following areas:
▪ Decreased knowledge of recent occasions or current events
▪ Impaired ability to perform challenging mental arithmetic-for example, to count backward from 100 by 7’s
▪ Decreased capacity to perform complex tasks, such as shopping, planning dinner for guests, paying bills or managing finances
▪ Reduced memory of personal history
▪ The affected individual may seem subdued and withdrawn, especially
in socially or mentally challenging situations
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Stage 5: Moderately Severe Cognitive Decline
Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to- day activities becomes essential. At this stage, individuals may:
▪ be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated,
▪ become confused about where they are or about the date, day of the week, or season,
▪ have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4’s or from 20 by 2’s,
▪ need help choosing proper clothing for the season or the occasion,
▪ retain substantial knowledge about themselves and know their own name and the names of their spouse or children, or
▪ require no assistance with eating or using the toilet.
Stage 6: Severe Cognitive Decline
Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
▪ lose most awareness of recent experiences and events as well as of their surroundings,
▪ recollect their personal history imperfectly, although they generally recall their own name,
▪ forget the name of their spouse or primary caregiver but generally can
distinguish familiar from unfamiliar faces,
▪ need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet,
▪ experience disruption of their normal sleep/waking cycle,
▪ need with handling details of toileting (flushing toilet, wiping and disposing of tissue properly),
▪ have increasing episodes of urinary or fecal incontinence
▪ experience significant personality changes and behavioral symptoms, including
suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding, or
▪ wander and become lost.
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Stage 7: Very Severe Cognitive Decline
This is the final stage of the disease when individuals lose the ability to
respond to their environment, the ability to speak and, ultimately, the ability to control movement.
▪ Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered
▪ Individuals need help with eating and toileting and there is general incontinence of urine
▪ Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become
abnormal and muscles grow rigid. Swallowing
is impaired. (Reisberg, B., 1136-1139)
Reversible/Treatable Causes of DementiaSeveral reversible conditions can cause similar symptoms to AD or another
dementia. Remember that confusion refers to a state of being which is often due to
outside influences. By eliminating or modifying the environment, many symptoms
of confusion can be reduced or eliminated.
Infections and immune disorders: Fever may cause dementia like
symptoms. Urinary tract infections or more serious brain infections
(meningitis and encephalitis) can cause thinking problems. Untreated
syphilis or Lyme disease can also cause dementia-like symptoms.
Diet: Diet may change with economic circumstances, social isolation,
problems with teeth or mouth or lack of nutritious food. Malnutrition will
lead to significant metabolic changes and vitamin deficiencies, particularly
B12 deficiency.
Chemical Imbalances: Many physical diseases are caused by an imbalance in
the body’s metabolism; and certain disease processes cause chemical
imbalances. These same imbalances can cause intellectual problems. Too
much potassium or sodium is as harmful as too little. Uncontrolled diabetes
can cause one to exhibit symptoms of dementia.
Mismanagement of Medications or Drug Interactions: Sometimes an elderly
person will not understand his/her medication schedule or remember to take
medications as directed. There is also the old adage, “If one is good, two is
better.” Individuals who see more than one doctor (and go to more than one
pharmacy) may not remember to report all medications already being taken
and the doctor may unknowingly prescribe additional medications. The
individual
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may not know the difference between a generic and a non-generic of the same
medication and take both or “double up” on the same medication. Side effects
or the interaction of prescribed medication may cause symptoms of dementia.
Alcohol Abuse: Use of alcohol is known to impair intellectual functioning.
Chronic use of alcohol will damage brain cells. The use of alcohol with
medication can cause agitation, drowsiness, sedation or memory loss.
Depression: It is often difficult to determine whether a severely depressed or
anxious person has an irreversible brain disorder or a severe emotional
condition. Depressed persons may exhibit memory problems or a decreased
ability to complete activities of daily living.
Visual or Hearing Losses: Persons who have difficulty with hearing or sight often
miss much of what is happening around them. They are unable to communicate
appropriately and sometimes appear to be confused.
Toxins: Lead poisoning in adults can cause hypertension, strokes, heart and lung
disease or mental disorders. Lead is a cumulative poison which can remain in the
blood for up to 20 days and in the bone and tooth tissue as long as 20 years. It
can be found in drinking water if the old pipes are made of lead. Paint chips can
be a source of lead poisoning if the paint used prior to 1950 has not been
removed and is chipping; persons with poor eyesight might not notice if paint
chips fall into their food. Even though old lead paint has been covered with new
coats, the hazard still exists unless the leaded paint has been fully removed.
Carbon Monoxide: This is an odorless gas which can eventually cause death if
the individual is exposed to it for an extended period of time. Old or
malfunctioning furnaces, gas water heaters, or exhaust fumes from a car are
often associated with this problem.
Isolation and Sensory Deprivation: Persons who have no or few outside
contacts, who do not watch TV, listen to the radio or read the newspaper will
exhibit symptoms of confusion and/or dementia. The individual will usually
score poorly on a mental status questionnaire.
Abuse Victimization: Individuals may appear confused at times because they do
not wish or are afraid to divulge sensitive information. The individual’s
evasiveness may be due to the fear of revealing an abusive situation. This
evasiveness would most likely appear in discussions regarding finances,
relationships, falls, fractures, or other medical issues.
If you suspect any of the above causes, work with the caregiver and
physician to obtain an appropriate medical evaluation. Ensuring proper
nutrition, removal of toxins from the environment, or counseling could
alleviate many of the symptoms.
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ALZHEIMER’S DISEASE
Alzheimer’s disease (pronounced Allz-high-merz) is a progressive and
degenerative disease of the brain (large numbers of nerve cells in the
brain die). It is the most common type of dementia, accounting for
approximately 60-80% of dementia cases. There is no known cause or
cure. The disease progresses gradually from forgetfulness to total
disability. The disease causes changes in personality, memory, and
function, thereby, affecting families as much as the person who has the
disease.
The disease was first identified in 1907 by Dr. Alois Alzheimer. During
an autopsy of a 56 year old patient, Dr. Alzheimer noticed “structural
changes in the brain of a demented patient.
Plaques and tangles had formed on the outside of the nerve cells which scientists believed are
degenerated ends of nerve fibers.” (Leschied, p. 27). There is also an
accumulation of an abnormal form of the protein tau inside neurons
(called tau tangles). The unique structural changes isolated the disease
from other dementias. Significant research on the disease did not begin
until the 1960’s because Alzheimer’s disease was thought to be a rare
disease of middle aged adults.
The symptoms of Alzheimer’s Disease usually begin with the individual
experiencing memory loss and having difficulty performing tasks that
were once done with ease such as managing money, driving, or
preparing meals. Caregivers can often look back and identify when the
individual started having difficulty completing tasks. As symptoms
worsen, the individual may become more disoriented about time and
place, misplacing items and not being able to
37
Incidence
∙ Today, every 67 seconds, someone in America develops AD; by 2050, it will
occur every 33 seconds
∙ Approximately 5.2 million Americans have AD with a projected 11-16
million Americans with AD by 2050
∙ One third of all seniors who die in a given year have been diagnosed with
Alzheimer’s or another dementia.
∙ About 70% of all nursing home residents have cognitive impairment, 50% of
assisted living residents have AD or another dementia, over 50% of adult
day service participants have AD or another dementia, as well as about
25% of all elderly hospital patients.
∙ The greatest risk factor for developing AD is age. While most individuals
with AD are 65 years of age or older, the likelihood of developing AD
doubles about every five years after age 65. After the age of 85, the risk is
nearly 50 percent.
∙ Individuals who have a parent, brother or sister with Alzheimer’s Disease
are more likely to develop AD than those who do not. The more family
members that have AD, the greater the risk of developing the disease.
∙ Genetics also play a role in whether an individual gets AD. Those that
inherit a copy of the APOE-e4 (Apolipoprotein E) gene have a greater risk
of developing the disease.
(Alzheimer’s Association, e27-e82)
Normal Memory Problems vs. Alzheimer’s
Many people report increased difficulty with names, dates, or appointments as
they age, but continue to remain active in the community and with their families.
Normal aging will allow us to eventually remember what was forgotten. Individuals
with Alzheimer ’s disease or other dementias will not remember that s/he forgot
something or remember how to backtrack to locate a misplaced item.
Benign (or normal) forgetfulness is a part of the normal aging process and
usually begins in early middle age. It is common for all of us to be more
forgetful when we’re depressed, grieving, overworked, or running in a dozen
directions.
38
Most people have some experience misplacing their keys, glasses or their car in a
parking lot. We all forget names or occasional appointments.
Key Differences between Early signs of Alzheimer’s disease
and normal aging include:
(NIH Publication No. 11.5441)
Alzheimer’s Disease Normal Aging
Making poor judgments and decisions a
lot of the time
Making a bad decision once in a while
Problems taking care of monthly bills Missing a monthly payments
Losing track of the date or time of year Forgetting which day it is and
remembering it later
Trouble having a conversation Sometimes forgetting which word to use
Misplacing things often and being unable
to find them
Losing things from time to time
39
VASCULAR DEMENTIAVascular dementia is the second most common type of dementia accounting for 10-
20 percent of cases. It is most often due to a stroke or infarct (a blockage or injury
to vessels supplying blood to the brain) and attacks a different part of the brain than
other dementias. Initial indicators of vascular dementia may be seen as trouble
planning and making decisions whereas individuals with Alzheimer’s disease
typically experience memory loss first. There may be a sudden on-set followed by
the individual exhibiting a more “step-wise” pattern of decline due to multiple
smaller strokes.
Other symptoms may include: memory problems, trouble speaking or
understanding speech, becoming disoriented with difficulty recognizing sights and
sounds that used to be familiar, becoming confused or agitated, changes in
personality or mood, difficulty walking and an increased number of falls.
Age is a risk factor for vascular dementia. This dementia is rare before age 65 but
the risk rises substantially after age 80. Risk factors for heart disease and stroke
raise the risk of getting vascular dementia. Atherosclerosis results from deposits of
cholesterol and other substances (plaques) that build up in the arteries and narrow
the blood vessels. The reduction of the flow of blood to the brain may increase the
risk of vascular dementia and possibly the risk of Alzheimer’s Disease, (Mayo Clinic
Health System website).
To decrease chances of developing vascular disease:
▪ Don’t smoke (smoking damages blood vessels which increases risk
of vascular dementia).
▪ Keep your blood pressure within recommended limits (the extra stress on blood vessels
everywhere including your brain, increases risk of vascular issues in the brain).
▪ Keep cholesterol within recommended limits. Elevated limits of
LDL or “bad” cholesterol increases risk of vascular dementia.
▪ Keep blood sugar within recommended limits (high glucose levels damage
blood vessels and damage to blood vessels in the brain increase risk of
stroke and vascular dementia).
▪ Eat a healthy diet
▪ Exercise.
40
▪ Maintain a healthy weight (obesity is a risk factor for vascular
diseases and therefore increases risk for vascular dementia)
▪ Limit alcohol consumption
Cognition may improve slightly after a stroke during rehabilitation.
Individuals who develop vascular dementia after a stroke survive
approximately three more years. (Alzheimer’s Association website.)
41
DEMENTIA WITH LEWY BODIESLewy Body Disease (named for Dr. Friederich Lewy) is a progressive disease affecting
approximately 1.3 million individuals in the United States and accounts for up to 20%
of people with dementia worldwide. Lewy bodies are abnormal clumps of a protein
(alpha-synuclein) in the brain. These deposits form in the neurons (nerve cells) in the
brain. The deposits cause neurons, especially at synapses (where brain cells
communicate with each other) to work less effectively. When the brain changes as a
result of these proteins, problems with thinking, behavior, movement or mood
occur. Common mood changes may include depression or apathy, anxiety, agitation,
paranoia, or delusions such as believing that a spouse is having an extramarital affair.
There is currently no cure for this condition.
Symptoms of Lewy Body Disease (LBD) typically begin for individuals in their early 50’s
and appear to affect more men than women. Early symptoms in this dementia are
often confused with symptoms of Alzheimer’s disease. LBD can occur by itself or can
occur with Alzheimer’s disease or Parkinson’s disease. Due to the similarity of
symptoms of Alzheimer’s or Parkinson’s, Lewy Body dementia is often misdiagnosed.
As the condition progresses, individuals have difficulty managing their activities of
daily living and instrumental activities of daily living.
There are two types of LBD—dementia with Lewy bodies and Parkinson’s disease
dementia. Though both are the result of the same biological changes in the brain,
the initial signs are different
Individuals with dementia with Lewy bodies develop cognitive problems within a
year of parkinsonian movement problems. Visual hallucinations may occur in the
early stage for up to 80% of individuals with LBD. Images of children or animals are
common. Other common symptoms include:
∙ Fluctuations in thinking, attention and alertness
∙ Difficulty in movement—slowness, difficulty walking, and rigidity
∙ REM sleep behavior disorder wherein individuals physically act out their
dreams. Also difficulty getting to sleep or excessive daytime sleepiness.
∙ Difficulty with complex thinking rather than memory problems
In Parkinson’s Disease dementia, movement symptoms (muscle stiffness,
tremor, shuffling gait) are evident first. It takes years longer for the cognitive
symptoms to appear.
42
Over time, individuals with either of these two dementias may
develop similar symptoms, however, not all individuals with
Parkinson’s Disease develop Parkinson’s disease dementia.
Main Symptoms of Lewy Body Dementia
Symptom Dementia with Lewy
Bodies
Parkinson’s Disease
Dementia
Dementia ❖ Appears within a year
of
movement problems
❖ Appears later in the
disease, after movement problems
Movement Problems
(parkinsonism)
❖ Appear at the same
time
as or after dementia
❖ Appear before
dementia
Fluctuating cognition,
attention, alertness
❖ ✔
Visual hallucinations ❖ ❖
REM sleep behavior disorder ✔ May develop
years
before other symptoms
✔ May develop
years
before other symptoms
Extreme sensitivity to
antipsychotic medications
✔ ✔
Changes in personality and
mood (depression, delusions, apathy)
✔ ✔
Changes in autonomic
(involuntary) nervous system (blood pressure,
bladder and bowel control)
✔ ✔
❖ Primary symptom
✔ Common symptom
(Lewy Body Dementia Association website, Diagnostic Criteria)
43
Management of Symptoms
One of the most effective approaches to managing symptoms is
to work with a team of professionals, each with their own
expertise, to coordinate their efforts to develop a
comprehensive plan of care.
∙ A neurologist can prescribe medications which may help symptoms.
∙ Physical Therapy can help with strengthening and ambulation.
∙ Speech Therapists can provide assistance with
swallowing difficulty and voice projection (voice tends
to get soft and low).
∙ Occupational Therapists can provide tips on how to better
complete activities of daily living.
∙ Counselors (from a mental health center or from a caregiver
program) can help families learn to manage difficult emotions
(such as depression, anxiety, etc.) and provide support and
planning for the future.
Without coordinating their efforts, they may unknowingly be
working at cross purposes. For example, knowing that physical
therapy is scheduled for late afternoons may help the physician
prescribe a more effective scheduling of medication use. Or,
knowing the individual has greater difficulty in the late
afternoon, physical therapy may be more advised in the
morning. Increasing each professional’s awareness of the total
plan of care and coordinating with each other significantly
increases the odds of a positive outcome for the individual.
44
SECTION 5
FRONTOTEMPORAL DEMENTIA
Frontotemporal disorders affect the frontal and temporal lobes of the
brain. The frontal lobes are located above the eyes and behind the
forehead on the right and left sides of the brain.
This area of the brain affects executive function (planning and sequencing, multi-tasking,
monitoring and correcting errors). When there is damage or
degeneration in these regions, the damage causes difficulty in thinking.
Other symptoms such as unusual behaviors, difficulty with work or
difficulty walking may result (NIH Publication, No. 14-6361 p. 2).
The temporal lobes are located below and to the side of the
frontal lobes. Memory is contained in this area as well as
having responsibility for language and emotions.
The cause of frontotemporal degeneration is not known in most cases,
although 15 to 40 percent of people have genetic mutations in certain
genes (Tau gene, PGRN gene, C9ORF72 gene, and VCP, CHMP2B,
TARDBP and FUS genes). There is no cure for this progressive disease
which can last up to 10 years. Approximately 60 percent of people with
FTD are 45-64 years old. (NIH Publication, No. 14-6361, p. 2)
The three types of frontotemporal disorders are described in the chart
on the next page. Note that symptoms may overlap within FTD as well
as with other types of dementia. It is for this reason that a thorough
evaluation be completed so that an accurate diagnosis can inform
appropriate interventions.
45
COMMUNICATIONCommunication with an individual with dementia requires patience. Individuals
may become frightened or embarrassed by their failure to communicate
effectively. Show respect in your methods of communication and never assume
that the individual cannot understand you.
Keep in mind that the person is doing the best that they can.Some techniques for effective communication include:
∙ Identifying yourself if the individual does not recognize you or to avoid
initial confusion, say your name before the individual feels they have to
figure it out.
∙ Call the individual by his/her preferred name.
∙ Stand/sit in front of the person and maintain eye contact equal to their eye
level if possible. Watch for nonverbal reactions particularly as related to
how close or far away you are from the person.
∙ Use touch appropriately to reassure them and ask permission to touch first.
∙ Reduce environmental distractions, particularly extraneous noise or visual
movement such as from a television, flickering lights, radio, nearby
conversations, etc.
∙ Understand that the individual may prefer to talk about the past because
those memories can be retrieved. Let the individual have some time to talk
about the past to build rapport.
∙ Use empathy and validation
∙ Speak slowly and allow ample time for reply. Pose questions slowly, reduce
distractions, and be sensitive to hearing or vision impairments.
∙ If you do not understand, ask the individual to show you.
∙ If the person has difficulty speaking, it is okay to ask questions for
clarification but be sure to ask the individual if the “guess” was correct.
Look for body language to affirm that you guessed correctly, (the
individual nods their head or moves on in topic.)
∙ Be aware that disruptive behavior from the individual with dementia may
just be their way of trying to communicate an unmet need.
∙ Use repetition. Phrase your message several different ways. Use the same
words the individual has used previously as this indicates some
understanding.
∙ Use several modes of input such as facial expressions, gestures, or
pictures, in addition to verbal communication. Act out words, if possible.
Be concrete. Abstract ideas like
46
hypothetical situations may confuse the individual. (“You look
sad, can you show me what you are thinking about?” rather
than “What is worrying you right now?” or “How do you feel?”)
∙ Use simple sentences with short words. Don’t elaborate. Ask yes or no questions.
∙ Avoid pronouns. Repeating the name of a person or thing may help them remember.
∙ Give instructions one step at a time.
∙ Limit choices.
∙ Let speech reflect sincerity. Do not speak in an overly enthusiastic
voice as it may cause confusion.
∙ Try to pick out meaningful comments if the person’s speech is
rambling or incoherent. Furnish missing words if you can.
∙ Respond to the person’s emotional needs. For instance, if a
person seems anxious over the absence of a caregiver, do not get
in to a lengthy explanation about their absence and don’t use
“therapeutic fibbing”. Not all individuals with dementia have
memory loss and may not trust you if you “fib”. If the individual
with dementia is looking for or worried about their little children,
focus on the individual’s strengths as a mother rather than telling
them that her children are in school and okay.
∙ Do not argue with the individual. Stop and let the person relax
if s/he becomes very agitated or aggressive. Wait awhile and
try to communicate again.
∙ Use common sense and try to maintain a sense of humor.
∙ Most importantly….try to make the interaction a pleasant experience.
47
CARE PLANNINGPlans of care should be “person centered”, keeping the person with dementia as
the focal point. The plan of care should honor the values and preferences of the
person with dementia while addressing safety factors as the symptoms become
more severe. The professional developing the plan of care must keep in mind that
the person with dementia can help in the decision making process well into the
disease.
“Person-centered care emphasizes the importance of not just diagnoses and
physical and medical needs, but of social, mental, emotional, and spiritual
needs as well. Components of person-centered and directed care include
respecting personhood, striving to maintain personhood in spite of declining
cognitive ability, treating people as individuals, seeing the world from the
perspective of the person with dementia,” (Lines, p. 5).
Services should not be imposed on an individual or their family even though the
need for a service is apparent. The individual/family must understand they have
the right to accept or reject any or all parts of the plan. It is crucial to include the
individual’s family in the planning process because the family will have an active
role in the plan and will need support and/or respite. Individuals with dementia
usually have preference for family members to complete all of the tasks that s/he
needs. Offer support to the family member by discussing the need for additional
assistance in the home.
When family members do not exist or are unavailable, the individual with dementia
may still be supported at home. Services should be evaluated routinely as the
person with dementia becomes more impaired. The care coordinator would also
play a greater role to monitor the situation for changes and reassess the on-going
safety of the plan of care. Consultations with a supervisor, the primary physician,
the Alzheimer’s Association or the regional testing site are all critical to gain a fuller
perspective and identify other care options.
At some point, a nursing home may become necessary for both the safety of the
individual with dementia and for an overwhelmed caregiver. Up until that point,
supportive services can keep individuals with dementia at home as long as possible.
For the individual with dementia, usually a combination of family, informal
supports, and formal services are needed in the plan of care.
48
Care Coordinators or Case Managers from Care Coordination Units, Managed Care
Organizations, Supportive and Assisted Living Facilities, or located in home care agencies,
along with Adult Protective Service Case Workers often serve as the eyes and ears for
physicians and for long-distance caregivers. As a result of the information gathered in
the completion of a comprehensive assessment, appropriate services can be
implemented. A Care Coordinator can assist the individual and family to:
1.) Increase or maintain the independence of the individual with dementia as
long as possible.
2.) Facilitate the least restrictive environment by securing supports and
coordinating care plans.
3.) Defend the individual’s rights by being an advocate.
4.) Support families so that services supplement and extend their care.
5.) Assure that services are at an appropriate level and accomplish the plan of care.
Continuum of CareA continuum of services and treatment interventions are available to assist individuals
with dementia. Check the Illinois Department on Aging website (in Resource Section) to
find the Aging and Disability Resource Center in your geographic area. Also listed are
Care Coordination Units who can complete a comprehensive needs assessment and
work with the person with dementia and their family to jointly develop a plan of care.
Broad categories of supportive services include home care, legal and financial assistance,
various types of socialization including adult day services, caregiver programs, and
environmental evaluations.
When the person with dementia needs more support and supervision than can be
provided in the home setting, but are not ready for long term care, assisted living
facilities and supportive living facilities (assisted living facilities that will accept
Medicaid payment) are an excellent option. Check with the individual facility to
determine if they provide care to individuals with dementia.
Medication: There are medicines that can treat the symptoms of Alzheimer’s disease but
there is no cure. Most of these medicines work best for individual in the early or middle
stages of the disease. They may keep memory loss from getting worse for a time.
One should use much precaution before deciding to use medication to address
undesirable behaviors. Older adults metabolize drugs differently than when they were
young which leads to unpredictable side effects and possible mismanagement of
medications. A mild dose may cause exaggerated side effects such as drowsiness or
agitation. It is especially difficult to
49
determine the appropriate drug or the proper dosage with an
individual with AD. It takes careful monitoring to find something
that will achieve and maintain the desired results.
Caregivers may seek out medication to reduce catastrophic reactions,
combative behavior, and sleep disturbances; however, medication
becomes dangerous when it is used only for the convenience of the
caregiver. In an attempt to gain relief from the behavior, the caregiver
may overdose the individual leaving them in a haze. They become
“easier to manage” for the caregiver but this can produce potential
health and safety hazards for the individual.
Environmental Adjustments
The more impaired the individual with Alzheimer’s disease or another
dementia becomes, the greater their chances of having an accident or
being injured in an unsafe environment. Since individuals with AD or
another dementia are not responsible for their actions, it is up to the
individual who is caring for them to make the environment as safe as
possible.
Three important principles are: keep the environment SIMPLE,
UNCLUTTERED, and UNCHANGED. Further modification may be
necessary as the individual’s condition worsens. Work with the
family and provider agencies to accomplish a safe environment.
50
WORKING WITH THE CAREGIVER
“There are only four kinds of people in this world. Those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”
~ Rosalynn Carter
Caring for an individual with dementia may make the caregiver feel good because
they are providing love and comfort. At times, the amount of care may become
overwhelming and it’s important for those in the aging and disability network to
provide the caregiver with the resources that can help reduce stress. The well-being
of the caregiver correlates to the well- being of the care receiver.
Caregivers may experience feelings of guilt, anger, frustration, and/or depression in
their role. Learning more about the disease and progression can be empowering for
the caregiver to reduce the fear of the unknown.
Encourage the caregiver to take care of themselves first so they can care for the care
receiver. By accepting help from family members, friends or formal support services
on a regular basis, caregivers can receive enough of a break to keep them going in
their caregiving journey. Caring for self also includes maintaining healthy practices
such as exercising and eating nutritious meals. Getting sufficient sleep is essential,
particularly for those whose care receiver is up in the night with disrupted sleep
cycles. Encourage caregivers to sleep when the care receiver sleeps.
Maintaining a sense of humor can reduce stress not only for the caregiver but in turn
can help with the mood of the person with dementia. Keeping a consistent routine
for the person with dementia can reduce agitation. Encourage the caregiver to seek
support through Caregiver Support Programs offered through Area Agencies on
Aging (See Resource Section), mental health providers, or support groups offered
through adult day centers, hospitals, or the Alzheimer’s Association.
For those individuals who develop early onset dementia, there is a process to
obtain Social Security Disability Insurance (SSDI) benefits in a faster manner:
51
Compassionate Allowances
Historically, persons with young-onset dementia have had a very arduous and lengthy SSDI
application process with multiple denials and appeals. The Social
Security Administration (SSA) rolled out its Compassionate Allowances
program in an effort to provide benefits quickly to applicants whose
medical conditions are so serious that their conditions obviously meet
disability standards. Due to successful advocacy efforts by the
Association for Frontotemporal Dementias, in March 2009,
Frontotemporal Dementia was one of the first fifty conditions named in
SSA’s Compassionate Allowances List. With the support of the
Alzheimer’s Association, early onset Alzheimer’s Disease and Primary
Progressive Aphasia were two of the 38 conditions subsequently added
in 2010 (Social Security Administration, 2010). Other dementias
included in the Compassionate Allowances Program now include: Adult
Onset Huntington Disease, Creutzfeldt - Jakob disease, Lewy Body
Dementia, Mixed Dementias, Progressive Supranuclear Palsy, The
ALS/Parkinsonism Dementia.
Call the Social Security Administration at 1-800-722-1213 or
see www.ssa.gov/compassionateallowances for more information and a
list of other conditions covered through Compassionate Allowances.
Planning for the future becomes even more important for the caregiver
who is caring for a person with dementia. Assuring that a Durable Power
of Attorney is in place before the person with dementia is incapable of
making decisions is critical as well as providing information about
Prevention of Spousal Impoverishment guidelines. Professionals in the
aging and disability network, can also help provide other planning
information: local elder law attorneys, local legal aid agency, and the
Social Security Administration. The Illinois Department on Aging website
can also provide the names of specific agencies in a specific geographic
location.
Dementia in
Intellectual and
Developmental
Disabilities:
Recognition and
Management
Jeffrey I. Bennett, MD Associate
Professor
SIU Neuroscience Institute Department of
Psychiatry
November 20, 2018
http://wilderdom.com/intelligence/IQW
hatScoresMean.html
◼Alzheimer’s Dementia
◼Vascular Dementia
◼Lewy Body Dementia
◼Frontotemporal Dementia
◼And at least 46 or more …..
◼B-12 Deficiency◼Folate Deficiency◼Hypothyroidism
◼ (“Not Very Reversible Dementias”)
23
▪ Detailed patient history
▪ How and when symptoms
appear
▪ Family history
▪ Assessment of emotional
status and living environment
▪ Physical and
Neurological exam and
laboratory tests
▪ Neuropsychological testing
▪ Memory, language skills
assessment
▪ Mathematic, drawing
and other brain
function tests
▪ X-ray, CT, or MRI to rule out
other diagnosis
▪ Misidentification by the
family and caregivers of
early signs of
Alzheimer’s disease (AD) as
normal aging process
▪ Social skills often maintained
in early AD
▪ Denial and lack of insight by
patient
▪ Lack of definitive screening
tools
▪ Diagnostic “Overshadowing”
25
▪ In addition to the barriers to the routine
approach:
– Detailed patient history
▪ May not be present; may be
subjective
– How and when symptoms appear
▪ Historical perspective not
apparent because of staff
turnover
– Family history
▪ Many families aren’t closely involved
– Assessment of emotional
status and living
environment
▪ Systems issues
26
27
▪ Physical exam and laboratory tests
– Lack of understanding of best
practices in working with
populations; diagnostic
overshadowing
▪ Neuropsychological testing
– Success rate differs
▪ Memory, language skills
assessment
– Often missing; differing opinions
▪ Mathematic, drawing and other
brain function tests
– Aimed at neuro-typical
▪ X-ray, CT, or MRI to rule out other
diagnosis
– Compliance issues
▪ The role of leadership, nursing, and social work
– Promote health literacy among families and
staff
– Train family and professional caregivers on
the signs of decline
– Provide guidelines to family and
professional caregivers on what
to report and to whom regarding
observed decline in functioning
– Allow for and encourage for
discussions with health care
professionals
– Encourage systematic assessment and
guidance about next steps
▪ Encourage open and honest communication
between health care professionals and all
members of the individual’s support system
with one another to develop the
appropriate delivery of services and allow
for future planning
2
8
29
▪ Exercise
▪ Proper
Diet
▪ Social
activity
▪ Music
therapy
▪ Pet
therapy
▪ Spiritual
therapy
▪ Structu
red day
activity
▪ Caregiver
support
30
▪ The occurrence of Alzheimer’s and
other Dementias is increasing in
prevalence and represents a
major challenge to the IDD field
▪ There is a significant rate of
under-diagnosis or misdiagnosis
of Alzheimer’s disease in the IDD
population
▪ Brain changes are likely to precede
functional signs
▪ If dementia can be identified
earlier, there is the potential
to proactively address
signs and symptoms
▪ Interventions, services or supports may
be more effective if offered prior to
significant cognitive or functional
change allowing the best
chance to impact quality of life and
quality of care
THE DEMENTIASHope Through Research
LEARN ABOUT:
•Types of dementia
•Risk factors
•Diagnosis and treatment
•Current research
National Institute of Neurological Disorders and
Stroke National Institute on Aging
2
The Basics of Dementia and
Cognitive Impairment
Dementia is the loss of cognitive functioning—the ability to
think, remember, or reason—to such an extent that it
interferes with a person’s daily life and activities. These
functions include memory, language skills, visual perception,
problem solving, self-management, and the ability to focus and
pay attention. Some people with dementia cannot control their
emotions, and their personalities may change. Dementia ranges
in severity from the mildest stage, when it is just beginning to
affect a person’s functioning, to the most severe stage, when
the person must depend completely on others for basic
activities of daily living.
Age is the primary risk factor for developing dementia. For
that reason, the number of people living with dementia could
double in the next 40 years as the number of Americans age 65
and older increases from 48 million today to more than 88
million in 2050. Regardless of the form of dementia, the
personal, economic, and societal demands can be devastating.
Dementia is not the same as age-related cognitive decline—
when certain areas of thinking, memory, and information
processing slow with age, but intelligence remains unchanged.
Unlike dementia, age-related memory loss isn’t disabling.
Occasional lapses of forgetfulness are normal in elderly adults.
While dementia is more common with advanced age (as many as
half of all people age 85 or older may have some form of
dementia), it is not an inevitable part of aging. Many people
live into their 90s and beyond without any signs of dementia.
Dementia is also not the same as delirium, which is usually a
short- term complication of a medical condition and most
often can be treated successfully. Signs and symptoms of
dementia result when once-healthy neurons (nerve cells) in
the brain stop working, lose connections with
3
other brain cells, and die. While everyone loses some neurons
as they age, people with dementia experience far greater loss.
Mild cognitive impairment (MCI) is a stage between normal
cognitive changes that may occur with age and more serious
symptoms that indicate dementia. Symptoms of MCI can
include problems with thinking, judgment, memory, and
language, but the loss doesn’t significantly interfere with the
ability to handle everyday activities. Symptoms of MCI include
mild memory loss; difficulty with planning or organization;
trouble finding words; frequently losing or misplacing things;
and forgetting names, conversations, and events. Someone who
has MCI may be at greater risk of eventually developing
Alzheimer’s or another type of dementia, particularly if the
degree of memory impairment is significant, but MCI does not
always progress to dementia. Symptoms may remain stable for
several years, and even improve over time in some people.
It is common to have more than one cause of dementia. Many
people with dementia have both Alzheimer’s disease and one or
more closely related disorders that share brain scanning or
clinical features (and sometimes both) with Alzheimer’s
disease. When a person is affected by more than one dementia
disorder, the dementia can be referred to as a mixed dementia.
Autopsy studies of the brains of people who had dementia
suggest that a majority of those age 80 and older probably had
mixed dementia caused by Alzheimer’s-related
neurodegenerative processes, vascular disease-related
processes, or another neurodegenerative condition. In fact, some
studies indicate that mixed vascular-degenerative dementia is
the most common cause of dementia in the elderly.
Researchers are still trying to understand the underlying
disease processes involved in dementia. Scientists have some
theories about mechanisms that may lead to different forms of
dementia, but more research is needed to better understand if
and how these mechanisms are involved.
4
Dementias Associated with Aging
and Neurodegeneration
Various disorders and factors contribute to dementia, resulting
in a progressive and irreversible loss of neurons and brain
functions. Currently, there are no cures for these
neurodegenerative disorders.
Some specific causes of dementia disorders are explained below.
Alzheimer’s Disease
Alzheimer’s disease is the most common cause of dementia in
older adults. As many as 5 million Americans age 65 and older
may have the disease. In most neurodegenerative diseases,
certain proteins abnormally clump together and are thought to
damage healthy neurons, causing them to stop functioning and
die. In Alzheimer’s, fragments of a protein called amyloid form
abnormal clusters called plaques between brain cells, and a
protein called tau forms tangles inside nerve cells.
It seems likely that damage to the
brain starts a decade or more
before memory and other
cognitive problems appear.
The damage often initially
appears in the hippocampus,
the part of the brain essential
in forming memories.
Ultimately, the abnormal plaques
and tangles spread throughout
the brain, and brain tissue
significantly shrinks.
As Alzheimer’s disease progresses, people experience greater
memory loss and other cognitive difficulties. Problems can
include wandering and getting lost, trouble handling money
and paying bills, repeating questions, taking longer to complete
normal daily tasks, and personality and behavior changes.
People are often diagnosed in this stage. Memory loss and
confusion worsen, and people begin to have problems
recognizing family and friends. They may be unable to learn
new things, carry out multi-step tasks such as getting dressed,
or cope with new situations. In addition, people at this stage
may have hallucinations, delusions, and paranoia and may
behave impulsively.
People with severe Alzheimer’s cannot communicate and are
completely dependent on others for their care. Near the end,
the person may be in bed most or all of the time as body
functions shut down. Certain drugs can temporarily slow some
symptoms of Alzheimer’s from getting worse, but currently
there are no treatments that stop the progression of the disease.
For more information on Alzheimer’s disease, visit the
Alzheimer’s and related Dementias Education and Referral
(ADEAR) Center at www.alzheimers.gov.
Researchers have not found a single gene solely responsible for
Alzheimer’s disease; rather, multiple genes are likely involved.
One genetic risk factor— having one form of the apolipoprotein
E (APOE) gene on chromosome 19—does increase a person’s
risk for developing Alzheimer’s. People who inherit one copy of
this APOE ε4 allele have an increased chance of developing the
disease; those who inherit two copies of the allele are at even
greater risk. (An allele is a variant form of a pair of genes that
are located
on a particular chromosome and control the same trait.) The
APOE ε4 allele may also be associated with an earlier onset of
memory loss and other symptoms. Researchers have found
that this allele is associated with an increased number of
amyloid plaques in the brain tissue of affected people.
Frontotemporal Disorders
Frontotemporal disorders are forms of dementia caused by a
family of neurodegenerative brain diseases collectively called
frontotemporal lobar degeneration. They primarily affect the
frontal and temporal lobes of the brain, rather than the
widespread shrinking and wasting away (atrophy) of brain
tissue seen in Alzheimer’s disease. In these disorders, changes
6
cells in the brain’s frontal lobes
affect
the ability to reason and make
decisions, prioritize and
multitask, act appropriately, and
control movement. Changes to the
temporal lobes affect memory and
how people understand words,
recognize objects, and recognize
and respond to emotions. Some
people decline rapidly
over 2 to 3 years, while others show only minimal changes for
many years. People can live with frontotemporal disorders for 2
to 10 years, sometimes longer, but it is difficult to predict the
time course for an affected individual. The signs and symptoms
may vary greatly among individuals as different parts of the
brain are affected. No treatment that can cure or reverse
frontotemporal disorders is currently available.
Clinically, frontotemporal disorders are classified into two
main types of syndromes:
• Behavioral variant frontotemporal dementia (bvFTD) involves
changes in behavior, judgment, and personality. People with this
disorder may have problems with cognition, but their memory
may stay relatively intact. They may do impulsive things that are
out of character or may engage in repetitive, unusual behaviors.
People with bvFTD also may say or do inappropriate things or
become uncaring. Over time, language and/or movement problems
may occur.
• Primary progressive aphasia (PPA) involves changes in the ability
to speak, understand, and express thoughts and/or words and to
write and read. Many people with PPA, though not all, develop
symptoms
of dementia. Problems with memory, reasoning, and judgment
are not apparent at first but can develop and progress over time.
Sometimes
a person with PPA cannot recognize the faces of familiar people
and common objects (called semantic PPA). Other individuals
have increasing trouble producing speech and may eventually
be unable to speak at all (called agrammatic PPA).
7
PPA is a language disorder that is not the same as the
problems with speech and ability to read and write (called
aphasia) that can result from a stroke.
Other types of frontotemporal disorders include:
• Corticobasal degeneration (CBD) involves progressive nerve-
cell loss and atrophy of specific areas of the brain, which can
affect memory, behavior, thinking, language, and
movement. The disease is named after parts of the brain
that are affected—the cerebral cortex (the outer part of the
brain) and the basal ganglia (structures deep in the brain
involved with movement). Not everyone who has CBD has
problems with memory, cognition, language, or behavior.
The disease tends to progress gradually, with early
symptoms beginning around age 60. Some of the movement
symptoms of CBD are similar to those seen in Parkinson’s
disease.
• Frontotemporal dementia with motor neuron disease (FTD/MND,
also called FTD-ALS) is a combination of behavioral variant
frontotemporal dementia and the progressive neuromuscular
weakness typically seen in amyotrophic lateral sclerosis
(ALS). ALS is a neurodegenerative disease that attacks
nerve cells responsible for controlling voluntary muscles
(muscle action that can be controlled, such as that in the
arms, legs, and face). Symptoms of either disease may
appear first, with other symptoms developing over time.
• Pick’s disease is characterized by Pick bodies—masses
comprised of the protein tau that accumulate inside
nerve cells, causing them to appear enlarged or balloon-
like. It is usually seen with bvFTD but sometimes with
PPA. Some symptoms are similar to those of Alzheimer’s
disease, including loss of speech, changes in behavior,
and trouble with thinking. However, while inappropriate
behavior characterizes the early stages of Pick’s disease,
memory loss is often the first symptom of Alzheimer’s.
8
Antidepressants and antipsychotics can control some of the
behavioral symptoms of Pick’s disease, but no treatment is
available to stop the disease from progressing.
• Progressive supranuclear palsy (PSP) is a brain disease that
can cause problems with thinking, memory, behavior,
problem solving, and judgment. It also affects the control of
eye movements, mood, speech, swallowing, vision,
concentration, and language. Because certain parts of the
brain that control movement are damaged, this disease
shares some of the problems with movement seen in people
with corticobasal degeneration and Parkinson’s disease.
Lewy Body Dementia
Lewy body dementia (LBD) is one of the most common causes of
dementia after Alzheimer’s disease and vascular disease. It
typically begins after age 50, but can occur earlier. It involves
abnormal protein deposits called Lewy bodies, which are
balloon-like structures that form inside nerve cells. The
abnormal buildup of the protein alpha-synuclein and other
proteins causes neurons to work less effectively and die. Initial
symptoms may vary, but over time, people with these disorders
develop similar cognitive, behavioral, physical, and sleep-
related symptoms.
Lewy body dementia includes two related conditions—dementia
with Lewy bodies and Parkinson’s disease dementia. In
dementia with Lewy bodies, the cognitive symptoms are seen
within a year of movement symptoms called parkinsonism
(including tremor, difficulty with walking and posture, and
rigid muscles). In Parkinson’s disease dementia, the cognitive
symptoms develop more than a year after movement problems
begin.
• Dementia with Lewy bodies (DLB) is one of the more common
forms of progressive dementia. Neurons in the outer layer of
the brain (cortex) and in the substantia nigra (a region
involved with the production of dopamine) degenerate.
Many neurons that remain contain Lewy bodies.
Symptoms such as difficulty
sleeping, loss of smell, and
visual hallucinations often
precede movement and other
problems by as many as 10
years. Later in the course of
DLB, some signs and symptoms
are similar to Alzheimer’s
disease and may include
memory loss, poor judgment,
and confusion. Other
signs and symptoms of DLB are similar to those of
Parkinson’s disease, including difficulty with movement
and posture, a shuffling walk, and changes in alertness
and attention. There is no cure for DLB, but there are
drugs that control some symptoms.
• Parkinson’s disease dementia (PDD) can occur in people with
Parkinson’s disease, but not all people with Parkinson’s
disease will develop dementia. PDD may affect memory,
social judgment, language, or reasoning. Autopsy studies
show that people with PDD often have Lewy bodies in the
cortex and other brain areas, and many have amyloid
plaques and tau tangles like those found in people with
Alzheimer’s disease, though it is not understood what these
similarities mean. The time from the onset of movement
symptoms to the onset of dementia symptoms varies greatly
from person to person. Risk factors for developing PDD
include the onset of Parkinson’s-related movement
symptoms followed by mild cognitive impairment and REM
sleep behavior disorder, which involves having frequent
nightmares and hallucinations.
Vascular Contributions to Cognitive
Impairment and Dementia
Vascular contributions to cognitive impairment and dementia
(VCID) cause significant changes to memory, thinking, and
behavior. Cognition and brain function can be significantly
affected by the size, location, and number of brain injuries.
10
as a result of risk factors that similarly increase the risk for
cerebrovascular disease (stroke), including atrial fibrillation,
hypertension, diabetes, and high cholesterol. Symptoms of
VCID can begin suddenly and progress
or subside during one’s lifetime. VCID can occur along with
Alzheimer’s disease. Persons with VCID almost always have
abnormalities in the brain on magnetic resonance imaging
scans. These include evidence of prior strokes, often small and
asymptomatic, as well as diffuse changes in the brain’s “white
matter”—the connecting “wires” of the brain that are critical
for relaying messages between brain regions. Microscopic brain
examination shows thickening of blood vessel walls called
arteriosclerosis and thinning or loss of components of the
white matter.
Forms of VCID include:
• Vascular dementia refers to progressive loss of memory and
other cognitive functions caused by vascular injury or
disease within the brain. Symptoms of vascular dementia
may sometimes be difficult to distinguish from Alzheimer’s
disease. Problems with organization, attention, slowed
thinking, and problem solving are all more prominent in
VCID, while memory loss is more prominent in Alzheimer’s.
• Vascular cognitive impairment involves changes with
language, attention, and the ability to think, reason, and
remember that are noticeable but are not significant enough
to greatly impact daily life. These changes, caused by
vascular injury or disease within the brain, progress slowly
over time.
• Post-stroke dementia can develop months after a major stroke.
Not everyone who has had a major stroke will develop
vascular dementia, but the risk for dementia is significantly
higher in someone who has had a stroke.
• Multi-infarct dementia is the result of many small strokes
(infarcts) and mini-strokes. Language or other functions
may be impaired, depending on the region of the brain that
is affected. The risk for dementia is
11
significantly higher in
someone who has had a
stroke. Dementia is more
likely when strokes affect both
sides of the brain. Even
strokes that don’t show any
noticeable symptoms can
increase the risk of dementia.
• Cerebral autosomal dominant
arteriopathy with subcortical
infarcts and
leukoencephalopathy
(CADASIL) is an extremely rare inherited disorder caused
by a thickening of the walls of small- and medium-sized
blood vessels, which reduces the flow of blood to the brain.
CADASIL is associated with multi-infarct dementia, stroke,
and other disorders. The first symptoms can appear in
people between ages 20 and 40. CADASIL may have
symptoms that can be confused with multiple sclerosis.
Many people with CADASIL are undiagnosed.
• Subcortical vascular dementia, previously called Binswanger’s
disease, involves extensive microscopic damage to the small
blood vessels and nerve fibers that make up white matter.
Some consider it an aggressive form of multi-infarct
dementia. Cognitive changes include problems with short-
term memory, organization, attention, decision making, and
behavior. Symptoms tend to begin after age 60, and they
progress in a stepwise manner. People with subcortical
vascular disease often have high blood pressure, a history of
stroke, or evidence of disease of the large blood vessels in
the neck or heart valves.
• Cerebral amyloid angiopathy is a buildup of amyloid plaques
in the walls of blood vessels in the brain. It is generally
diagnosed when multiple tiny bleeds in the brain are
discovered using magnetic resonance imaging.
12
Neuropathology of Neurodegenerative
Disorders
The different forms of age-related dementia, as well as many
age-related neurodegenerative diseases, are thought to be
caused by changes in various proteins. These diseases are
called proteinopathies because they involve the abnormal
buildup of specific proteins in the brain. Mutations in genes
that provide instructions for making these proteins have been
found to cause dementia in families. However, in the vast
majority of affected individuals, dementia is not inherited,
and the cause is unknown. Alzheimer’s disease,
frontotemporal disorders, and Lewy body dementia are
proteinopathies.
In some dementias, changes in the protein tau cause it to
form clumps inside nerve cells in the brain, which is
believed to make the cells stop functioning properly and die.
Disorders that are associated with the abnormal buildup of
tau are called tauopathies.
In Alzheimer’s disease, the tau protein aggregates (accumulates
into abnormal clumps) and becomes twisted and tangled,
forming fibers— called neurofibrillary or tau tangles—inside
neurons. Abnormal clumps (plaques) of another protein, called
beta-amyloid, are prominent in spaces between brain cells. Both
plaques and tangles are thought to contribute to reduced
function and nerve-cell death in Alzheimer’s and are the
hallmarks of the disease.
Beta-amyloid plaques are also seen in some forms of LBD,
cerebral amyloid angiopathy, and Parkinson’s disease
dementia. They are also common in elderly individuals
who do not have dementia.
13
Some, but not all, forms of frontotemporal disorders are
tauopathies. Other forms of these disorders are associated
with the buildup of the protein TDP-43. A mutation in a
gene called progranulin, and another in a gene called
C9orf72, can cause frontotemporal disorders with
accumulation of TDP-43 in nerve cells.
In other dementias and some brain disorders, the protein
synuclein becomes misshapen and forms harmful clumps inside
neurons in different brain regions. Disorders in which
synuclein builds up inside neurons are called
synucleinopathies. Changes in synuclein and/or its function are
the basis
of LBD and other disorders such as multiple system atrophy.
Multiple system atrophy is a progressive neurodegenerative
disorder characterized by a combination of symptoms that
affect both the autonomic nervous system (the part of the
nervous system that controls involuntary action such as
blood pressure or digestion) and movement. These changes
cause parkinsonism, a condition resembling Parkinson’s
disease.
Reversible Dementia-like Disorders
and Conditions
Many conditions that cause dementia-like symptoms can be
halted or even reversed with the appropriate treatment.
• Normal pressure hydrocephalus is an abnormal buildup of
cerebrospinal fluid in the brain. Elderly individuals with the
condition usually have trouble with walking and bladder
control before the onset of dementia. Normal pressure
hydrocephalus can be treated or even reversed by
implanting a shunt system to divert fluid from the brain.
• Nutritional deficiencies of vitamin B1 (thiamine), caused by
chronic alcoholism, and of vitamin B12 can be reversed with
treatment. People who have abused substances such as
alcohol and recreational drugs sometimes display signs of
dementia even after the substance abuse has stopped.
• Side effects of medications or drug combinations may cause
cognitive impairment that looks like a degenerative or
vascular dementia but that could reverse upon stopping
these medications.
• Vasculitis, an inflammation of brain blood vessels, can cause
dementia after multiple strokes and may be treated with
immunosuppressive medications.
• Subdural hematoma, or bleeding between the brain’s surface
and its outer covering (the dura), is common after a fall.
Subdural hematomas can cause dementia-like symptoms
and changes in mental function. With treatment, some
symptoms can be reversed.
• Some non-malignant brain tumors can cause symptoms
resembling dementia. Recovery occurs following their
removal by neurosurgery.
• Some chronic infections around the brain, so-called chronic
meningitis, can cause dementia and may be treatable by
drugs that kill the infectious agent.
14
15
Other Neurodegenerative Diseases and
Conditions with Dementia or Dementia-
like Symptoms
Doctors have identified many other conditions that can cause
dementia or dementia-like symptoms. The diseases have
different symptoms that involve body and brain functions, and
they affect mental health and cognition.
• Argyrophilic grain disease is a common, late-onset
degenerative disease that affects brain regions involved
in memory and emotion. It causes cognitive decline and
changes in memory and behavior, with difficulty finding
words. The disease’s signs and symptoms are
indistinguishable from late-onset Alzheimer’s disease.
Confirmation of the diagnosis can be made only at autopsy.
• Creutzfeldt-Jakob disease is a rare brain disorder that is
characterized by rapidly progressing dementia. Infectious
proteins called prions become misfolded and tend to clump
together, causing the brain damage. Initial symptoms
include impaired memory, judgment, and thinking, along
with loss of muscle coordination and impaired vision. Some
symptoms of this brain disorder are similar to symptoms of
other progressive neurological disorders such as Alzheimer’s
disease.
• Chronic traumatic encephalopathy (CTE) is caused by
repeated traumatic brain injury (TBI) in some people
who suffered multiple concussions. People with CTE
may
develop dementia, poor
coordination, slurred speech,
and other symptoms similar to
those seen in Parkinson’s
disease 20 years or more after
the injury. Late-stage CTE is
also characterized by brain
atrophy and widespread
deposits of tau in nerve
16
cells. In some people, even just 5 to 10 years beyond the TBI,
behavioral and mood changes may occur. Dementia may not
yet be present and the brain may not have started to shrink,
but small deposits of tau are seen in specific brain regions at
autopsy.
• Huntington’s disease is an inherited, progressive brain disease
that affects a person’s judgment, memory, ability to plan
and organize, and other cognitive functions. Symptoms
typically begin around age 30 or 40 and include abnormal
and uncontrollable movements called chorea, as well as
problems with walking and lack of coordination. Cognitive
problems worsen as the disease progresses, and problems
controlling movement lead to complete loss of ability for self-
care.
• HIV-associated dementia (HAD) can occur in people who have
human immunodeficiency virus (HIV), the virus that causes
AIDS. HAD damages the brain’s white matter and leads to a
type of dementia associated with memory problems, social
withdrawal, and trouble concentrating. People with HAD
may develop movement problems
as well. The incidence of HAD has dropped dramatically
with the availability of effective antiretroviral therapies
for managing the underlying virus.
• Secondary dementias occur in people with disorders that
damage brain tissue. Such disorders may include multiple
sclerosis, meningitis, and encephalitis, as well as Wilson’s
disease (in which excessive amounts of copper build up to
cause brain damage). People with malignant brain tumors
may develop dementia or dementia-like symptoms because
of damage to their brain circuits or a buildup of pressure
inside the skull.
Risk Factors for Dementia and
Cognitive Impairment
The following risk factors may increase a person’s chance of
developing one or more kinds of dementia. Some of these
factors can be modified, while others cannot.
• Age. Advancing age is the best-known risk factor for
developing dementia.
• Hypertension. High blood pressure has been linked to
cognitive decline, stroke, and types of dementia that
damage the white matter regions of the brain. High blood
pressure causes “wear and tear” to brain blood vessel
walls called arteriosclerosis.
• Stroke. A single major stroke or a series of smaller strokes
increases a person’s risk of developing vascular dementia. A
person who has had a stroke is at an increased risk of
having additional strokes, which further increases the risk
of developing dementia.
• Alcohol use. Most studies suggest
that regularly drinking large
amounts of alcohol increases the
risk of dementia. Specific
dementias, such as Wernicke-
Korsakoff syndrome, are
associated with alcohol abuse.
• Atherosclerosis. The accumulation of fats and cholesterol in
the lining of arteries, coupled with an inflammatory
process that leads to a thickening of the blood vessel walls
(known as atherosclerosis), can lead to stroke, which
raises the risk for vascular dementia.
• Diabetes. Poorly controlled diabetes is a risk factor for
stroke and cardiovascular disease, which in turn
increase the risk for vascular dementia.
• Down syndrome. Many people with Down syndrome develop
symptoms of Alzheimer’s disease by the time they reach
middle age.
18
• Genetics. The chance of developing a genetically linked form
of dementia increases when more than one family member
has the disorder. In many dementias, there can be a family
history of a similar disease. In some cases, such as with
frontotemporal disorders, having just one parent who carries
a mutation increases the risk of inheriting the condition. A
very small proportion of dementia is inherited.
• Head injury. An impact to the head can cause a TBI.
Certain types of TBI or repeated TBIs can cause dementia
and other severe cognitive problems.
• Parkinson’s disease. The degeneration and death of nerve
cells in the brain of people with Parkinson’s disease can
cause dementia and significant memory loss.
• Smoking. Smoking increases the risk of developing
cardiovascular diseases that slow or stop blood from
getting to the brain.
The National Academies of Sciences,
Engineering, and Medicine recently released a
report of the evidence on preventing dementia:
www.ncbi.nlm.nih.gov/books/NBK436397.
Diagnosis
To diagnose dementia, doctors first assess whether an
individual has an underlying treatable condition such as
abnormal thyroid function, vitamin deficiency, or normal
pressure hydrocephalus that may relate to cognitive
difficulties. Early detection of symptoms is important, as some
causes
can be treated. In many cases, the specific type of dementia
may not be confirmed until after the person has died and
the brain is examined.
An assessment generally includes:
• Medical history and physical
exam. Assessing a person’s
medical and family history,
current symptoms and
medication, and vital signs can
help the doctor detect
conditions that might cause or
occur with dementia. Some
conditions may be treatable.
• Neurological evaluations. Assessing balance, sensory response,
reflexes, and other functions helps the doctor identify signs of
conditions that may affect the diagnosis or are treatable with
drugs. Doctors also might use an electroencephalogram to
check for abnormal electrical brain activity.
• Brain scans. Computed tomography and magnetic resonance
imaging can detect structural abnormalities and rule out
other causes of dementia. Positron emission tomography
can look for patterns of altered brain activity that are
common in dementia. Recent advances in positron emission
tomography can detect amyloid plaques and tau tangles in
Alzheimer’s disease.
• Cognitive and neuropsychological tests. These tests are used to
assess memory, language skills, math skills, problem
solving, and other abilities related to mental functioning.
20
• Laboratory tests. Testing a person’s blood and other fluids, as
well as checking levels of various chemicals, hormones, and
vitamin levels, can identify or rule out conditions that may
contribute to dementia.
• Presymptomatic tests. Genetic testing can help some people
who have a strong family history of dementia identify risk
for a dementia with a known gene defect.
• Psychiatric evaluation. This evaluation will help
determine if depression or another mental health
condition is causing or contributing to a person’s
symptoms.
Guidelines prepared by NIA and the Alzheimer’s Association
focus on three stages of Alzheimer’s disease: dementia due to
Alzheimer’s, mild cognitive impairment (MCI) due to
Alzheimer’s, and preclinical (presymptomatic) Alzheimer’s.
(Presymptomatic identification is exclusively used as a research
diagnosis at this point and is not relevant to routine clinical
practice.) The guidelines also include biomarker tests used in
research studies to measure biological changes in the brain
associated with Alzheimer’s disease and criteria for
documenting and reporting Alzheimer’s-related changes
observed during an autopsy.
21
Treatment and Management
There are currently no treatments to stop or slow dementia
caused by neurodegenerative diseases. Some diseases that
occur at the same time as dementia, such as diabetes and
depression, can be treated. Other
symptoms that may occur in dementia-like conditions can also
be treated, although some symptoms may only respond to
treatment for a period of time. A team of specialists—doctors,
nurses, and speech, physical, and other therapists—familiar
with these disorders can help guide patient care.
Medications are available to treat
certain behavioral symptoms,
delusions, depression, muscle
stiffness, and
risk factors for vascular cognitive
impairment such as high blood
pressure. Always consult with a
doctor as some medications may
make symptoms worse.
Neurodegenerative diseases
can be treated and managed
as follows:
• Alzheimer’s disease. Most drugs are used to treat symptoms
in Alzheimer’s. One class of drugs, called cholinesterase
inhibitors, can temporarily improve or stabilize memory
and thinking skills in some people by increasing activity of
the cholinergic brain network—a subsystem in the brain
that is highly involved with memory
and learning. These drugs include donepezil, rivastigmine,
and galantamine. The drug memantine is in another class of
medications called NMDA receptor antagonists, which
prevent declines in learning and memory. Memantine may
be combined with a cholinesterase inhibitor for added
benefits. These drugs are sometimes used to treat other
dementias in which Alzheimer’s disease is believed to co-
occur.
22
• Frontotemporal disorders. There are no medications
approved to treat or prevent these disorders and most
other types of progressive dementia. Sedatives,
antidepressants, and other drugs used to treat
Parkinson’s and Alzheimer’s symptoms may help manage
certain symptoms and behavioral problems associated
with the disorders.
• Dementia with Lewy bodies. Medicines for managing DLB are
aimed at relieving symptoms such as gait and balance
disturbances, stiffness, hallucinations, and delusions.
Studies suggest that cholinesterase inhibitor drugs used to
treat people with Alzheimer’s disease may offer some benefit
to people with DLB.
• Parkinson’s disease dementia. Some studies suggest that the
cholinesterase inhibitors used to treat people with
Alzheimer’s might improve cognitive, behavioral, and
psychotic symptoms in people with PDD. Unfortunately,
many of the medications used to treat the motor symptoms
of Parkinson’s disease worsen the cognitive problems. The
U.S. Food and Drug Administration has approved
rivastigmine, an Alzheimer’s drug, to treat cognitive
symptoms in PDD.
• Vascular contributions to cognitive impairment and dementia.
This type of dementia is often managed with drugs to
prevent strokes or reduce the risk of additional brain
damage. Some studies suggest that drugs that improve
memory in Alzheimer’s might benefit people with early
vascular dementia. Treating the modifiable risk factors can
help prevent additional stroke.
A team of therapists can help with maintaining physical
movement, addressing speech and swallowing issues, and
learning new ways to handle loss of skills with everyday tasks
such as feeding oneself.
23
It is important to educate family, friends, and caregivers about a
loved one’s medical issues. Also, in-person and online support
groups offered by many disease awareness and caregiver
advocacy organizations can give families and other caregivers
additional resources, as well as opportunities to share
experiences and express concerns. (See the Resources section at
the end of this booklet).
Researchers in the Small Vessel Vascular Contributions to Cognitive
Impairment and Dementia (VCID) Biomarkers Program hope
to develop biomarkers of key vascular processes related to VCID in
Alzheimer’s disease. Identifying biomarkers may improve the
efficiency and outcome of trials designed to test drug effectiveness
and safety in humans and speed the development of therapies for the
dementias.
Additional NIA/NINDS research on age-related and other dementias
includes:
Clinical studies. Clinical studies offer an opportunity to help researchers
find better ways to safely detect, treat, or prevent the dementias.
Various NIH
Institutes support clinical studies on Alzheimer’s disease and related
dementias at the NIH research campus in Bethesda, MD, and at medical
research centers throughout the United States. For information about
participating in clinical studies for Alzheimer’s, related dementias, and
other disorders, visit “NIH Clinical Research Trials and You” at
www.nih.gov/health/clinicaltrials. For a
list of Alzheimer’s and related dementias clinical trials and studies, see
www.nia.nih.gov/alzheimers/clinical-trials. For a comprehensive list of all
trials, go to www.clinicaltrials.gov and type in the name of the dementia,
such as “Lewy body dementia” or “vascular dementia.”
Biomarkers. Several research projects hope to identify dementia
biomarkers (measurable biological signs that may indicate disease risk
and progression or confirm diagnosis). Such biomarkers could be
detected through brain imaging or even blood tests. Research projects
include the study of possible biomarkers to predict cognitive decline in
people with Parkinson’s disease, the Alzheimer’s
Biomarkers Consortium of Down Syndrome (many people with Down
syndrome have Alzheimer’s-related brain changes in their 30s that can
lead to dementia in their 50s and 60s), and genetic and biomarker studies
that may lead to promising treatments for frontotemporal disorders. The
Alzheimer’s Disease Neuroimaging Initiative (ADNI) is a longitudinal
study to validate the use of biomarkers for Alzheimer’s disease clinical
trials and diagnosis (see www.adni-info.org).
27
Drugs and compounds. A number of drugs and compounds that
might slow the progression of Alzheimer’s disease and other
dementias are in various stages of testing. A NINDS-NIA
study found that tau antisense oligonucleotides—compounds
that are genetically engineered to block
a cell’s assembly line production of the toxic form of the protein
tau— could prevent and reverse some brain injury caused by
tau in animal models. NIH-supported prevention trials are
testing promising drugs that target amyloid proteins that form
plaques in the brain. Other NIH studies include the use of
drugs being developed to treat autism spectrum
disorders to see if they can improve cognitive function in people
with age- related cognitive decline.
Exercise. Physical activity can
benefit mental well-being and
improve daily functioning and
quality of life in people with
dementia. Researchers are
assessing the combined approach
of aerobic and cognitive exercise
to see if it can delay
or slow the progression of
Alzheimer’s disease in at-risk
older adults. Other research is
assessing the benefit of
exercise to delay MCI in older individuals and to improve
brain function in older adults who may be at risk for
developing Alzheimer’s.
Genetics. NIH scientists continue to look for new genes that may
be responsible for the development of Alzheimer’s disease and
other forms of dementia. One approach is using genome-wide
association studies, which can rapidly scan the complete sets of
DNA, or genomes, of many people to find genetic variations
associated with a particular disease. Identifying new genetic
associations for neurodegenerative diseases may lead to better
strategies to detect, treat, and prevent the dementias.
28
Imaging. Clinical imaging may help
researchers better understand
changes in the brains of people
with dementia, as well as help
diagnose these disorders. For
example, research hopes to enhance
brain imaging techniques to make
it possible to detect and try to stop
the earliest changes in the
protective blood-brain barrier
that may contribute to VCID. ADNI
has identified and developed imaging techniques and
biomarker measures in blood and cerebrospinal fluid that are
being used in research to track changes in the living brains of
older people who are cognitively normal, have MCI, or have
mild Alzheimer’s disease.
International efforts. The International Alzheimer’s Disease
Research Portfolio (IADRP) helps individuals learn about
research related to both Alzheimer’s and related dementias at
public and private organizations worldwide. It also helps
organizations leverage resources and avoid duplication of effort.
The Common Alzheimer’s Disease Research Ontology—a
classification system that allows organizations to integrate and
compare research portfolios—was developed by NIA, NIH, and
the Alzheimer’s Association. For more information, see
http://iadrp.nia.nih.gov.
Natural history studies. Studying groups of people over time
may lead to ways to identify those at risk of developing
dementia or cognitive
impairment. Three NIH-funded research teams, for example,
are conducting longitudinal studies of individuals in which
frontotemporal disorders
run in families or appear on their own to understand the
progression of frontotemporal disorders both before and
after symptom onset; identify genes; discover biomarkers for
diagnosis, progression, and prognosis; and establish a
clinical research consortium to support therapy
development.
29
Proteins. A number of proteins—including tau, alpha-synuclein,
TDP-43, and beta-amyloid—are involved with various cellular
processes. When there is a change in the genes that direct the
production or rate of clearance of these proteins, the proteins
can build into abnormal amounts and form abnormal clumps
that damage nerve cells in the brain, causing dementia,
movement, and other symptoms. NIH-funded research projects
seek to better understand the toxic effects of protein buildup
and how it is related to the development of dementia. For
example, a number of studies target the buildup of amyloid,
which forms plaques that are characteristic in Alzheimer’s
disease. Other researchers hope to better understand how
proteins misfold and become harmful in frontotemporal
disorders and LBD.
Stem cells. Stem cells are unique in that they have the potential
to develop into many different cell types in the body, including
brain cells. Scientists are exploring various types of cells,
including stem cells, to discover nerve-cell mechanisms that
lead to the onset and progression of Alzheimer’s disease and
other forms of dementia. For example, scientists converted
human
skin cells into a model of human neurons. Such neurons, when
created from individuals with familial forms of Alzheimer’s,
show biochemical changes that are typical of the disease.
Researchers are also investigating the mechanism by which
human Alzheimer’s neurons develop cellular and molecular
defects in protein production and degradation.
Additional NIH research projects. More information about
dementias research supported by NIA, NINDS, and other
NIH Institutes and Centers can be found using NIH
RePORTER, a searchable database of current and past
research projects supported by NIH and other federal
agencies. RePORTER also includes links to publications and
resources from these projects. See https://projectreporter.nih.gov.
30
Conclusion
Currently, there are no cures for the common dementias caused
by progressive neurodegeneration, including Alzheimer’s
disease, frontotemporal disorders, and Lewy body dementia.
Some evidence suggests that controlling vascular risk factors,
such as high blood pressure, may reduce the risk of developing
dementia decades later. Some symptoms of dementia and
conditions that cause dementia or have dementia-like
symptoms are treatable. A better understanding of dementia
disorders, as well as their diagnosis and treatment, will make
it possible for affected individuals and their caretakers to live
their lives more fully and meet daily challenges. NIH,
primarily through research activities funded by NIA and
NINDS, continues to improve diagnosis, design therapeutic
approaches to dementias, and create tools and resources to help
speed the development of treatments that can be used in
practice. These discoveries may eventually lead to ways to slow
disease progression or even cure and prevent the dementias.
Effective Communication
Communication Overview
• A dementia patient’s communication patterns will change over time and a caregiver’s communication techniques need to change as well
• The best way to support a person with dementia (and to communicate effectively) is to build a relationship with that person
Communication Challenges
• Word-finding difficulty
• Repetition
• Loss of reading and writing ability
• Revert to native language
• Loss of ability to speak in clear sentences
• Loss of ability to understand
• Inability to use words
Communication Tips
• Talk to the person in a place free of distraction
• Begin conversation with orienting information
• Look directly at the person
• Make sure you have the person’s attention
• Be at eye level with the person
• Speak slowly and clearly
Communication Tips
• Use short, simple sentences
• Ask simple yes/no questions
• Use concrete terms and familiar words
• Talk in an easy-going, pleasant manner
• Allow sufficient time for the person to respond
• Break up tasks into smaller steps
Having Trouble Being Understood?
• Be sure that you are allowing enough time for the person to process and respond
• Demonstrate visually what you are saying
• Think about the complexity of what you are saying
• Try a hug and change the subject
Having Trouble Understanding?
• Listen actively and carefully
• Try to focus on a word or phrase that makes sense
• Respond to the emotional tone of the statement
• Stay calm and be patient
• Ask family members about possible meanings
Things Not To Do
• Do not:
– Argue with the person
– Order the person around
– Tell people what they can not do
– Be condescending
– Ask questions that rely on good memory
– Talk about people in front of them
When Verbal Communication Fails
• Try distracting the person
• Ignore a verbal outburst if you can not think of a positive response
• Try other forms of communication
• Learn your own body language
• Learn the other person’s body language
Complex Care Needs of
Individuals with
Dementia
Complex Care Needs of Individuals with
Dementia
• People with dementia have complex health conditions that are difficult to manage
• Common health problems for people with dementia include:– Cardiovascular disease
– Hypertension
– Diabetes
• Dementia influences the care of comorbid health conditions
Complex Care Needs of Individuals with
Dementia
• There are a variety of complications that result from poorly managed comorbidities for people with dementia
– Medication related issues
– Increased rates of hospitalization
– Reduced capacity for self-management and care
Supporting People with Dementia in Their Care
Supporting People with Dementia in Their Care
• Providers can play a central role in management of dementia which can improve care and quality of life outcomes
• Principal goal of a provider’s role is to ensure that people with dementia have full access to the broad range of pharmacological and non-pharmacological interventions that are available, as well as treating complications from dementia
• Secondary role is to connect caregivers with resources that provide help and support
Supporting People with Dementia in Their Care
• In order to coordinate and manage care for people with dementia, providers can use the following tools– Early assessment – allows for
earlier treatment of comorbid conditions
– Using dementia as the organizing framework for care; developing a care plan under a dementia diagnosis
– Effective care management can 1) delay institutionalization, 2) reduce neuropsychiatric conditions, and 3) be cost effective
Supporting People with Dementia in Their Care
• Elements of effective care models include:
– Care coordination through a collaborative team approach including physicians, nurse managers and community resources
Supporting People with Dementia in Their Care
• Elements of effective care models include:
– Focusing on care transitions; elements of effective care transitions include:
• Comprehensive logistical support for a move
• Coordinated primary care follow-up after transition
• Ongoing contact with a care manager
• Patient/caregiver education
• Medication reconciliation
• Facilitated access to community resources
• Interdisciplinary provider-to-provider care communications
• Attention to red flags of deteriorating health
Assessing Behaviors
Common Behaviors
• Walking about
• Exiting or trying to leave
• Wanting to go home
• Showing fatigue as the day progresses
• Sleep disturbances
• Looking or searching for things
• Gathering
• Shopping
• Expressing discomfort
• Having hallucinations or delusions
• Being suspicious or paranoid
• Repetitive actions
• Loud verbalizations that may not be coherent
Why Challenging Behaviors Occur
• Change in environment
• A caregiver’s approach to communication
• Past history and behaviors
• Internal needs of the person
• The task that the person is doing
• Inability of the person to express needs or desires
A Different Way to View Behaviors
Wandering Demonstrating mobility
Sundowning Tired at end of day
RummagingGathering / Exploring
HoardingShopping
Resistance to careFeeling uncomfortable
When Is Behavior a Problem?
• It violates the rights of others
• It poses a threat to someone’s health and safety (including one’s own)
Behavioral Problems
in Older Adults
● Depression:
●Behavioral symptoms of
depression includes:
appetite changes, sleep
disturbance, irritability/
agitation, refusal of “care,”
inability to make a
decision, social isolation,
withdrawal, tearfulness,
and sad mood.
11
4
Causes of Depression
in Older Adults
➢ Causes may be physical, social, or
psychological in origin, including:
▪ Specific events in a person's life,
such as the death of a spouse, a
change in circumstances, or a
health problem that limits activities
and mobility
▪ Medical conditions - Parkinson's
disease, hormonal disorders, heart
disease, or thyroid problems
▪ Chronic pain
▪ Nutritional deficiencies
▪ Genetic predisposition to the
condition
▪ Chemical imbalance in the brain11
5
Depression and the
Older Adult
▪ Affects more older adults
in medical settings, up to
37% older patients in
primary care –
approximately 30% of
these patients have major
depression the remainder
have a variety of
depressive syndromes
that could also benefit
from medical attention
(Alexopoulos, Koenig).11
6
Late Onset
Depression●Depression occurring for the
first time in late life – onset
later than age 60
●Usually brought on by
another “medical illness”
●When someone is already
physically ill, depression is
both difficult to recognize and
treat
●Greater apathy/ anhedonia
●Less lifetime personality
dysfunction
●Cognitive deficits more
pronounced
●In some individuals may be a
precursor to dementia
11
7
Depression and
Suicide in the Older
Adult▪ NIMH - Although they comprise only
12 percent of the U.S. population, individuals age 65 and older accounted for 16 percent of suicide deaths in 2004.
▪ American Association of Suicidology -
Suicide rates for elderly males are the
highest risk at a rate of 31.1 per
100,000 (2007)
▪ White men over 85 (the old-old) were
at the greatest risk of all age-gender-
race groups. In 2007, the rates for
these men was 45.42 per 100,000 -
2.5 time the current rate for men of all
ages (18.3 per 100,000). 11
8
Depression and the
Older Adult▪ Untreated depression can lead to
disability , worsening of other
illnesses, institutionalization,
premature death and suicide
(GMHF)
▪ Community surveys have found that
depressive disorders and symptoms
account for more disability than
medical illness
▪ With proper diagnosis and treated
more than 80% of individuals with
depression recover and return to
normal lives (GMHF)
11
9
Causes of Behavioral
Problems in the Older
Adult
●Anxiety● Universal human experience
● Emotionally based physical
symptoms
● Question the cause of the
anxiety
▪ Physical cause
▪ Anxiety Disorders
▪ In the aged anxiety rarely
occurs in the absence of
depression
▪ Environmental issues
12
0
Problem Solving Steps1. Determine problem
o Patient behavior
o Caregiver reaction or concern
2. Define/operationalize o Frequency
o Duration
o Intensity
o Characteristics
o Antecedents and consequences of behavior (ABC Process)
3. Assess previous attempts to address4. Set goals and realistic outcome
©AAHCM
Problem Solving Steps5. Treat or eliminate antecedents and
triggerso Unmet physical needs (e.g., pain)
o Unmet psychological needs (e.g., loneliness)
o Environmental causes (e.g., stimulation, noise)
o Psychiatric causes (e.g., depression)
6. Develop plano Brainstorm best practice and evidence
guidelines strategies
o Help caregiver select strategies based on type of problem and dyad’s needs, abilities, and resources
o Write strategies down
o Teach caregiver to use strategies, practice and role model
7. Review and troubleshoot plan
©AAHCM
Problem Solving – Define Problem▶ Problem: Confusion, agitation, dependence,
◦ When does it happen?
◦ Where does it happen?
◦ How often does it happen?
◦ Is anyone around?
◦ Is the patient hurt?
decreased mobility, fallsa
▶ Operationalize:
©AAHCM
Problem Solving –Goals▶ Problem: Wandering▶ What would make it better:◦ Keep from wandering▶Adapt environment to reduce
exit-seeking◦ Make wandering safe ▶Identification/GPS▶Safe wandering paths
©AAHCM
Problem Solving – Possible Solutions▶ Problems: Increased dependence
in dressing, unable to choose appropriate and clean clothing, increased agitation
▶ Possible solutions:
◦ Medication◦ Attendant◦ Lay out
clothes◦ Simplify
tasks◦ Limit
choices◦ Cue,
prompt◦ Modify
environment
©AAHCM
As opposed to just forgetting
something, serious memory
problems...
A. Make it hard to do everyday
things
B. Happen once in a while
C. Only occur to the elderly
D. Can be easily identified
Questions:
Dementia is a single disease with
a specific set of symptoms and
cause.
A. True
B. False
Alzheimer’s disease is generally
caused by...
A. Aging
B. Unhealthy lifestyle
C. Wasting of the brain tissue
D. An acute event like a stroke
When having difficulty
communicating with someone
with dementia you should:
A. Speak louder and more slowly
B. Attempt to speak what you
believe they are trying to say
C. Listen actively and carefully
D. Respond to the emotional tone of
the statement
E. Stay calm and patient
F. More than one of the above
There are currently several
treatments to slow, stop and even
reverse neurodegenerative
diseases, like dementia.
A. True
B. False
There are currently several
treatments to manage
neurodegenerative diseases, like
dementia, such as:
A. Physical therapy
B. Speech therapy
C. Medications
D. More than one of the above