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.

3

4

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.

5

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.

6

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.

7

8

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.

9

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.

10

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.

11

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.

12

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.

13

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.

14

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.

15

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.

16

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.

17

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.

18

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.

19

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.

21

22

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

adear@nia.nih.gov

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.

23

Alzheimer’s Association1-800-272-3900 (toll-free)

1-866-403-3073 (TTY/toll-free)

info@alz.org

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)

info@alzfdn.org

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

27

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.

28

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

29

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

30

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

31

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.

32

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

33

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.

34

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

35

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.

36

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