## Chapter 2

## 

## Frequently Asked Questions About 

## Memory Loss, Dementia, and Alzheimer's Disease

> *Neighbors complain that a resident wanders up and down the hallway,
> trying her key in several doors before finally finding the door to her
> own apartment . . .*
>
> *A normally well-groomed resident is neglecting his personal hygiene
> and sometimes wears multiple layers of clothing . . .*
>
> *A resident accuses people of stealing his keys or moving his
> apartment so that he can't find it . . .*

### Q: What Should I Do If A Resident Seems Confused Or Behaves Strangely?

**A.** The memory loss, confusion, and disorientation described above
are symptoms of dementing illness, the most common of which is
Alzheimer's disease.

Unfortunately, many people fail to recognize that these symptoms
indicate something is wrong. They may mistakenly assume that such
behavior is a normal part of the aging process; it isn't. Or, symptoms
may develop gradually and go unnoticed for a long time. Sometimes people
refuse to act even when they know something is wrong.

> It is important to arrange for a physician evaluation when you
> recognize these symptoms in a resident. Only a physician can properly
> diagnose the resident's condition, and sometimes symptoms are the
> result of treatable conditions. Even when the diagnosis is Alzheimer's
> disease, help is available to support and care for the person with
> dementia and to provide education and respite for families and
> neighbors.

Q.  **Doesn't Everyone Forget?**

**A.** Yes. Forgetting is normal, even necessary. Our brain selectively
processes information, choosing to store only a small fraction of the
many thousands of bits of sensory data that come our way. We can't
remember every single thing that we see, hear, smell, touch, think, and
feel every day, nor would we want to. And, even those things that we
expect to remember, we sometimes forget. The most common memory
complaints include forgetting where we put things like keys and
eyeglasses, and forgetting names. Emotional problems, physical illness,
and stress can play havoc with anyone's memory, young or old.^1^

### 

### Memory Squashers

-   **Illness, stress or worry**

-   **Grief** (Sorrow from a significant loss, such as the death of a
    spouse or relocation to an unfamiliar environment.)

-   **Inattention** (If we don't pay attention to an event or a fact in
    the first place, it is never stored in our memory.)

-   **Distractions**

-   **Vision or hearing loss** (We have to be able to record information
    through our senses in order to remember it later.)

**Q.** **When Is Memory Loss A Problem?**

**A.** Sometimes memory loss is more serious than ordinary
forgetfulness. Diagnosis and treatment for memory loss are necessary
when it:

-   occurs with increasing frequency;

-   interferes with everyday activities and social relationships;

-   affects other intellectual functions such as reasoning and judgment.

> This type of memory loss is described as **dementia**. Dementia is an
> umbrella term for a wide variety of medical conditions that cause a
> decline in mental functioning that is severe enough to interfere with
> a person's ability to act independently and perform routine
> activities.

### Q. What Are Some Observable Warning Signs That A Resident May Be Experiencing Dementia?

**A.** There are ten warning signs to watch for, which alone or in
combination may indicate that a resident has dementia resulting from
Alzheimer's disease or some other medical condition.^2^

#### The resident exhibits frequent memory loss:

-   Forgets appointments or shows up over and over again at the wrong
    times.

1.  **The resident has difficulty performing familiar tasks:**

-   Burns pans or sets off smoke alarms, leading to frequent fire-safety
    concerns;

-   Gets locked out of the building or can't find the right apartment;

-   Forgets where the car is parked, tries key in others' cars, gets
    lost in familiar surroundings, or has frequent "fender benders."

3.  **The resident displays problems with language:**

-   Asks the same question or tells the same story over and over;

-   Forgets simple words or substitutes inappropriate words when
    speaking;

```{=html}
<!-- -->
```
-   Ignores non-compliance or eviction notices (may be having trouble
    comprehending written or spoken communication).

4.  **The resident is disorientated to time and place:**

-   Has trouble locating the right apartment;

-   Wanders uninvited into other people's apartments;

-   Repeatedly loses apartment keys or insists that "the key doesn't
    work;"

-   Exits elevator on the wrong floor or wanders aimlessly through the
    building;

-   Becomes disoriented in his or her own apartment and is unable to
    locate the bathroom or bedroom;

-   Gets lost away from home or is frequently returned to the residence
    by police.

5.  **The resident displays poor or decreased judgment:**

-   Is frequently dressed in layers or in attire that is inappropriate
    for the weather;

> **6. The resident has problems with abstract thinking:**

-   Fails to pay bills, or over-pays rent or other bills.

> **7. The resident frequently misplaces things:**

-   Throws odd or inappropriate items (e.g., full cans of food) in the
    trash.

> **8. The resident exhibits changes in mood or behavior:**

-   Shows decreased attention to hygiene and grooming;

```{=html}
<!-- -->
```
-   Leaves the lights and TV on all night.

> **9. The resident shows changes in personality:**

-   Seems withdrawn or angry, although previously friendly and outgoing;

-   Makes false accusations that others are stealing personal items;

-   Complains that people are "changing the locks," "moving my apartment
    and not telling me," or "hiding my car."

**10. The resident displays a loss of initiative:**

-   Sits in community room all day and does not seem to know where to
    go;

-   Refuses to attend community gatherings, especially those previously
    enjoyed;

-   Unsure of how to find previously familiar places;

-   Looks to others for directional cues or follows other people without
    being invited to do so.

### Q. What Causes Dementia?

**A.** There many different medical conditions that cause dementia-like
symptoms. **Alzheimer's disease is the most common cause, accounting
for** **56% of all cases, but it is not the only cause.** Other
diseases, such as strokes and Parkinson's disease, may cause dementia.
Other conditions such as infections or medication reactions are
temporary, even reversible. Anyone experiencing memory deficits or
confusion needs to see a doctor for a thorough diagnostic work-up.

**Causes of Dementia**^3^

> ![](media/image1.pct){width="5.055555555555555in" height="2.3125in"}

### Source:*What Is Alzheimer's Disease?* Alzheimer's Disease and Related Disorders Association, Inc., 2002. 

### Q. Can Some Causes Of Dementia Be Treated?

A.  Yes. Here are some causes of dementia that can be treated:

+----------------------------+-----------------------------------------+
| -   Depression             | -   Thyroid imbalance                   |
+----------------------------+-----------------------------------------+
| -   Delirium               | -   Infections (urinary tract,          |
|                            |     respiratory)                        |
+----------------------------+-----------------------------------------+
| -   Reaction to medication | -   Dehydration                         |
+----------------------------+-----------------------------------------+
| -   Interaction of         | -   Malnutrition                        |
|     medications            |                                         |
+----------------------------+-----------------------------------------+

### Q. What About Delirium?

**A.** Because of ageism, elderly people with delirium are vulnerable to
having their condition misdiagnosed as dementia, especially if there is
no one available to talk about their mental status prior to the onset of
confusion. This can result in a lack of needed treatment and ultimately
result in the person having to prematurely give up his or her apartment
and move to a care setting. The RSC who has been proactive about
obtaining lease information may be able to advocate for a more thorough
work-up based on observable indicators of the person's level of
functioning prior to the medical emergency.

> **Delirium Requires Emergency Treatment**
>
> Delirium is an acute state of confusion that is typically triggered
>
> by an underlying problem such as hypoglycemia, infection, trauma,
> pneumonia, drug toxicity, shock, dehydration, CVA (stroke) or cerebral
> tumor. Hallmarks are rapid decline in cognitive function,
> disorientation to place and time, decreased attention span, poor
> recent memory and immediate recall, poor judgment, restlessness,
> altered level of consciousness, suspiciousness, and altered perception
> (hallucinations and delusions). **A person suffering from delirium
> needs emergency medical care.**
>
> Source: *Nursing 1999,* Springhouse Corp., January, 1999.

**Q. What Is Alzheimer's Disease?**

**A.** Alzheimer's disease is the most common form of dementia. It
affects 4 million Americans, nearly 30,000 of whom live in Maine. It is
a progressive, degenerative disease of the brain in which brain cells
die and are not replaced. The disease, which begins gradually and lasts
from 3 to 20 years, results in impaired memory, thinking, and behavior.
Eventually the person becomes unable to live independently. The average
duration of the disease is eight years, but it is always fatal. As of
this time, the causes are still unknown, and there is no cure.

**Q. Isn't Memory Loss A Normal Part Of Aging?**

**A.** Yes and no. Some thirty-year-olds have poor memories while some
ninety-year-olds don't forget a thing. In general, however, as people
age they often complain that their memories are not quite as sharp as
they used to be. It may take longer for some adults to learn new
information and it may be more difficult for them to recall information
they already know. Compensating for these types of memory problems is
easy because judgment and reasoning remain intact. People with
age-related memory loss can still follow written or spoken directions.
They ask for directions if they get lost or look outside to see if their
clothing is appropriate for the weather. As we age, we may forget parts
of an experience, but not the whole thing; we may forget what we had for
lunch, but not whether we had lunch at all.

> In short, although inconvenient, age-related memory loss has very
> little impact on a person's ability to function and does not get worse
> over time. Alzheimer's disease does get progressively worse over time
> until it becomes impossible for the person to function without
> help.^4^

### Q. What Is The Difference Between Alzheimer's Disease And Age-Related Memory Difficulties?

**A.** The symptoms of Alzheimer's disease are much more severe than
simple memory lapses. Alzheimer's symptoms will eventually affect a
person's work and social life and the ability to live independently. The
chart below shows the differences between Alzheimer's disease and
age-related memory problems. **Note:** *Only a physician or trained
health care professional can make a determination of whether memory loss
is due to Alzheimer's disease.*

+--------------------+-----------------------+-------------------------+
| **Activities**     | **Person With**       | **Person With           |
|                    |                       | Age-Related Memory      |
|                    | **Alzheimer's         | Problems**              |
|                    | Disease**             |                         |
+--------------------+-----------------------+-------------------------+
| ### Memory lapses  | Forgets whole         | Forgets parts of        |
|                    | experiences           | experiences             |
+--------------------+-----------------------+-------------------------+
| Can recall         | Rarely                | Often                   |
| previous memory    |                       |                         |
| lapses             |                       |                         |
+--------------------+-----------------------+-------------------------+
| Can follow written | Gradually unable      | Usually able            |
| or spoken          |                       |                         |
| directions         |                       |                         |
+--------------------+-----------------------+-------------------------+
| Can use notes      | Gradually unable      | Usually able            |
+--------------------+-----------------------+-------------------------+
| Can care for self  | Gradually unable      | Usually able            |
+--------------------+-----------------------+-------------------------+

Source:*What Is Alzheimer's Disease?* Alzheimer's Disease and Related
Disorders Association, 2002. (Derived from the book *Care of Alzheimer's
Patients: A Manual for Nursing Home Staff*, by Lisa P. Gwyther,
A.C.S.W.)

**Q. Do All People With Alzheimer's Disease Have The Same Symptoms?**

**A.** No, Alzheimer's disease is a variable disease in which people
progress at different rates and display widely different patterns of
symptoms. Although everyone with Alzheimer's disease will experience
worsening problems with memory, judgment, language and motor skills, the
rate of decline will vary from person to person. Other symptoms,
including sleep disturbances, paranoia, and agitation, are behavioral in
nature and may or may not be part of an individual's disease profile.

**Q. What Happens As The Disease Progresses?**

**A.** The disease process may begin in the brain as much as 20 years
before the symptoms of Alzheimer's appear. In general, there are three
stages to the progression of the disease, which are outlined below.^5^

#### Early Symptoms. Stage One usually lasts from two to four years. Because the disease develops gradually, a person with Alzheimer's may be able to hide the symptoms for some time. She may have good days when nothing seems amiss, or parts of days when she looks and acts like her old self. For these reasons, it may be several years before family members realize there is a serious problem and seek diagnosis. Someone with Alzheimer's may refuse to see a physician, denying there is a problem. In addition, a person in the early stages of the disease may: 

-   Forget recent events (a telephone call or meal)

-   Have trouble doing arithmetic, handling money, making change

-   Suddenly dislike familiar people or show less understanding of
    others

-   Have trouble finding the words they want in conversation, frequently
    substituting general words or incorrect words that sound similar

-   Get lost going to familiar places, such as specific locations within
    the housing project

-   Forget how things work (the washing machine or microwave)

-   Ask repetitive questions

-   Lose, misplace, or hide things

-   Constantly check locks, calendar, doors

-   Become confused about time or abstract concepts such as "in a
    minute."

### Middle-Stage Symptoms. Stage Two can last from two to ten years and is characterized by increasing memory loss and confusion. All the symptoms of Stage One worsen, and greater assistance is required. A person in Stage Two may:

-   Show changes in behavior, sleep patterns, and judgment of safety
    risks

-   Mix up the identity of past and present acquaintances and family
    members

-   Have trouble keeping a thought and talk in circles

-   Have trouble with home safety or staying alone due to poor judgment

-   Hoard things

-   Urinate in strange places

-   Make repetitive statements

-   Follow people

-   Become restless (especially in the late afternoon and early evening)
    and pace, get agitated or angry

-   Be unable to organize, plan ahead, or follow logic

-   Make up stories to fill in memory gaps

-   Be unable to follow written signs or write checks

-   Be suspicious, curse, fidget, or behave inappropriately

-   Sit and stare for hours, forget to eat or use utensils, or eat only
    sweets

-   Become sloppy or tactless

-   Resist bathing and dressing

-   See or hear things that aren't there or believe things that aren't
    true

-   Wander in search of an old job or long-deceased parents

-   Walk more slowly, and shuffle instead of picking up feet to walk

-   Need help finding the toilet, using the shower, fixing food, and
    remembering to drink, change clothes, or dress appropriately for the
    weather

-   Talk to their reflections in the mirror or believe television
    stories are happening to them

-   Forget what is private behavior (may disrobe or masturbate in
    public).

### Late or Terminal Stage. Stage Three may last from one to three years or longer. The person with Alzheimer's will become completely dependent on others for his daily needs and care. People in the late stages of Alzheimer's may:

-   Fail to recognize themselves or their families, though their eyes
    may light up and they may have moments of recognition

-   Speak gibberish, stop speaking, or become impossible to understand

-   Lose control of their bladders and then bowels

-   Lose weight and become unsteady or unable to walk

-   Have higher risk for seizures, skin breakdown, choking, infections,
    and falls

-   Withdraw from all activities and sleep more

-   Need total help with bathing, dressing, moving and toileting.

**Q. Is There A Violent Stage?**

**A.** No. Some people may experience episodes of agitation or
aggression, but every person is different. These symptoms are nearly
always triggered by something in the environment (e.g., noise, multiple
distractions, being rushed by caregivers) or internal distress (e.g.,
pain, fatigue, boredom). Usually changing the approach or making the
person more comfortable alleviates these symptoms. Occasionally,
medication is needed as a last resort.

**Q. Symptoms Seem To Come And Go. Is The Resident Just Being
Manipulative?**

**A.** No, the resident with Alzheimer's is not being manipulative.
Alzheimer's disease causes brain damage. The resident has no control
over her symptoms or when they occur. People with Alzheimer's have good
days and bad days, and it is very common for symptoms to come and go,
especially in the early stages.

### Q. Can People With Alzheimer's Disease Live Alone?

**A.** In the early stages, the disease may be undetectable except to
someone who knows the resident well, and even then, perhaps only in
retrospect. She may be able to compensate for any memory deficits by
using notes, calendars, and other memory aides. Later, she may still be
able to live alone if outside support is provided to help with tasks
like bill paying, shopping, and meal preparation.

Eventually, however, the resident will need help with all activities of
daily living, including bathing, dressing, and toileting. In the
beginning, environmental modifications and intermittent supervision can
be used to address the symptoms of Alzheimer's disease. For example,
signs or pictures can be hung to help her locate the right apartment, or
an automatic shut-off can be added to the stove to help protect against
fire danger. As the disease progresses the resident will require closer
monitoring and increased hands-on care. Eventually, she will need to
move to a more supportive living environment, such as a relative's home
or an assisted living or nursing care facility.

**Q. When Is It No Longer Safe For A Resident With Alzheimer's To Live
Alone?**

**A.** Simply put, when the resident becomes a danger to himself or to
others and sufficient support cannot be put in place to correct the
problem. Repeated lease violations are often a good indicator of the
resident's inability to live self-sufficiently in independent housing.
Examples include:

-   When the resident is no longer able to maintain the apartment in a
    safe and sanitary condition;

-   When the stove is left on and unattended;

-   When smoking behavior becomes dangerous;

-   When the resident's behavior is disruptive or threatening to the
    neighbors.

With assistance from friends, neighbors or agency staff, the resident
may still be able to live safely on his own. The bottom line is that the
resident must be able to comply with the terms of the lease on his own
or with assistance.

**Q. I Don't Want The Resident To Be Evicted. Shouldn't I Just Leave Him
Alone?**

**A.** Ignoring the situation will only make things worse. The resident
may become more confused and unsafe, or neighbors may grow frustrated
and angry with his behavior. Reporting your observations to the property
manager or to the Resident Service Coordinator initiates a process that
will keep the person safe and give him the best chance of remaining in
his own home. The goal of intervention is to get necessary services in
place. Eviction is the last resort after exhausting all options,
including involving the family, emergency contacts, community resources
and, when appropriate, Adult Protective Services.

> In some instances, *beginning the proceedings for eviction* can
> provide the leverage needed to get service providers and families
> involved. For example, the resident and/or his family may be in denial
> that he has dementia until they are confronted with the evidence of
> repeated lease violations.
>
> Intervention allows the resident to obtain the help he needs whether
> that means bringing services into the home or moving him to a more
> appropriate care setting.

### Sources

1*. Keepsake: A Program on Memory, Aging and Alzheimer's,* developed in
collaboration with The National Council on the Aging and the Alzheimer's
Association, sponsored by Eisai Inc. and Pfizer Inc., 1998.

2\. Adapted from *Is It Alzheimer's? Warning Signs You Should Know,*
Alzheimer's Disease and Related Disorders Association, Inc., 1996.

3\. *What Is Alzheimer's Disease?* Alzheimer's Disease and Related
Disorders Association, Inc., 2002.

4\. *Keepsake: A Program on Memory, Aging and Alzheimer's,* developed in
collaboration with The National Council on the Aging and the Alzheimer's
Association, sponsored by Eisai Inc. and Pfizer Inc., 1998.

5\. Adapted from *Home Is Where I Remember Thing: A Curriculum for Home
and Community Alzheimer Care,* by Lisa P. Gwyther, Duke Alzheimer's
Family Support Program, Duke University Medical Center, Durham, North
Carolina, 1997; and *Care of Alzheimer's Patients: A Manual for Nursing
Home Staff,* American Health Care Association and Alzheimer's Disease
and Related Disorders Association, 1985.

**Resources And Further Reading**

1.  *Alzheimer's Awareness Training Packet,* developed by Evelyne
    Tunley-Daymude, Ph.D., Director of Education, Alzheimer's
    Association Alaska Chapter. For more information, call
    1-800-478-1080.

2.  *Alzheimer's Disease: A Handbook for Caregivers,* (Third Edition),
    by Ronald C. Hamdy, MD, et al., 1998. To order, contact the Maine
    Alzheimer's Association at

3.  1-800-660-2871, or visit the web site at
    [www.mainealz.org](http://www.mainealz.org/).

4.  *Caregiving at a Glance: Fingertip Help for Families Taking Care of
    People With Alzheimer's Type Illnesses,* (Second Edition), by Lin E.
    Noyes, Family Respite Center, Falls Church, Virginia, 2000. To
    order, contact the Maine Alzheimer's Association at 1-800-660-2871,
    or visit the web site at
    [www.mainealz.org](http://www.mainealz.org/)

5.  *"Home Is Where I Remember Things:"A Curriculum for Home and
    Community Alzheimer Care,* by Lisa P. Gwyther, Duke University
    Medical Center, Durham, North Carolina, 1997.

6.  *Caring for People With Dementia: A Training Guide,* published by
    The Training Collaborative, a joint project of the Maine Alzheimer's
    Association, Alzheimer's Care Center, Gardiner; Muskie School of
    Public Service at the University of Southern Maine and the Maine
    Alzheimer's Project, April 1998. For more information, contact the
    Maine Alzheimer's Association at 1-800-660-2871.

7.  *The 36-Hour Day* (Third Edition), by Nancy L. Mace and Peter V.
    Rabins, The Johns Hopkins University Press, Baltimore, 1999.

8.  *Care of Alzheimer's Patients: A Manual for Nursing Home Staff,* by
    Lisa P. Gwyther, ACSW, American Health Care Association and the
    Alzheimer's Association, 1995. To order, contact the Maine
    Alzheimer's Association at 1-800-660-2871, or visit the web site at
    [www.mainealz.org](http://www.mainealz.org/)

 You can also order the following brochures by calling the Maine
Alzheimer's Association at 1-800-660-2871, or call your local Chapter.

-   *Is It Alzheimer's? Warning Signs You Should Know*

-   *Steps to Getting a Diagnosis*

-   *An Overview of Alzheimer's Disease and Related Dementias*

## Appendix 2.1 

### [Steps to Getting A Diagnosis]{.underline}

-   **Determination of Medical History.** The person being tested and
    family members will be interviewed both individually and together to
    gather background information on the person's daily functioning,
    current medical and physical conditions, and family medical history.

```{=html}
<!-- -->
```
-   **Mental Status Evaluation.** During the mental status evaluation,
    the person's sense of time and place, and ability to remember,
    understand, talk and do simple calculations will be assessed. The
    person may be asked questions such as: "What year is it?" "What day
    of the week is it?" "Who is the current president?" The person will
    be asked to complete mental exercises, such as spelling a word
    backwards, writing a sentence, or copying a design. When reviewing
    the test results, the physician will consider the individual's
    overall performance in relation to his or her educational background
    and occupation.

```{=html}
<!-- -->
```
-   **Physical Examination.** During the physical exam, the physician
    will evaluate the person's nutritional status and check blood
    pressure and pulse. The physician will also search for the presence
    of cardiac, respiratory, liver, kidney, and thyroid diseases, and
    atherosclerosis (hardening of the arteries). Some of these
    conditions can cause dementia-like symptoms.

```{=html}
<!-- -->
```
-   **Neurological Exam.** A physician, usually a neurologist, will
    closely evaluate the person's nervous system for problems that may
    signal brain disorders other than Alzheimer's disease. The physician
    will search for evidence of previous strokes, Parkinson's disease,
    hydrocephalus (fluid accumulation in the brain), a brain tumor, and
    other illnesses that impair memory and/or thinking. The physician
    will learn about the health of the brain by testing coordination,
    muscle tone and strength, eye movement, speech and sensation. For
    example, the physician will test reflexes by tapping the knee,
    checking the person's ability to sense feeling on their hands and
    feet, and listening for slurred speech.

```{=html}
<!-- -->
```
-   **Laboratory Tests.** A variety of laboratory tests will be ordered
    by the physician to help diagnose Alzheimer's disease by ruling out
    other disorders. A complete blood count and blood chemistry will be
    ordered to detect anemia, infection, diabetes, and kidney and liver
    disorders. Levels of vitamin B12 and folic acid (a vitamin produced
    by the body) are measured, as low levels can be associated with
    dementia. Since very high or low amounts of the thyroid hormone can
    cause confusion or dementia, levels of the thyroid hormone are
    measured through a blood test.

*Continued*

> The physician may also order an EEG (electroencephalogram) to detect
> abnormal brain wave activity. This test can detect conditions such as
> epilepsy, which can sometimes cause prolonged mild seizures that leave
> a person in a confused state.
>
> A CT (computerized tomography) scan, which takes x-ray images of the
> brain, is sometimes used. The brain is scanned for evidence of tumors,
> strokes, blood clots and hydrocephalus. MRI (magnetic resonance
> imaging) is another brain-imaging technique sometimes used. More
> experimental tests may also be recommended but are not necessary for
> the diagnosis. These include PET (positron emission tomography), which
> shows how difference areas of the brain respond when the person is
> asked to perform different activities such as reading, listening to
> music, or talking; and SPECT (single proton emission computed
> tomography), which shows how blood is circulating to the brain.

-   **Psychiatric, Psychological and Other Evaluations.** A psychiatric
    evaluation can rule out the presence of other illnesses, such as
    depression, that can result in memory loss similar to dementia of
    the Alzheimer type. Neuropsychological testing may also be done to
    test memory, reasoning, writing, vision-motor coordination, and
    ability to express ideas. These tests may take several hours, and
    may involve interviews with a psychologist, as well as written
    tests. These tests provide more in-depth information than the mental
    status evaluation.

> Nurses, occupational therapists, rehabilitation therapists, or
> physical therapists may be called upon to look for problems with
> memory, reasoning, language and judgment affecting the person's daily
> functioning.

Source: *Steps to Getting a Diagnosis: Finding Out If It's Alzheimer's
Disease,* Alzheimer's Disease and Related Disorders Association, 1997.

**Appendix 2.2**

[Alzheimer's Evaluation Programs]{.underline}

**Alzheimer's Diagnosis and Evaluation**

Through a comprehensive assessment, a team consisting of a geriatric
physician and/or nurse, social worker, and specialized staff determine
the type of memory disorder or dementia. Information about the disease
is shared with family members and caregivers, as well as with family or
primary care physicians. Depending on the diagnosis, assistance is then
provided to help identify the resources necessary to provide the most
appropriate care. If a fee is charged, Medicare, Medicaid, or insurance
may cover some or all of the cost. Maine's evaluation centers are listed
below:

**Bidderford & Portland:**

AGES Program, University of New England/Southern Maine Medical Center,
207-283-4882 or 1-800-930-2437

**Bangor:**

The Center for Healthy Aging, (207) 973-7094

The Alzheimer's and Memory Center/Neurology Associates of Eastern Maine,
207-947-0558 or 1-800-208-0558

**Caribou:**

Memory Clinic, Cary Medical Center, (207) 498-3111 ext. 1394

**Ellsworth:**

Community Health and Counseling Services and Maine Coast Physician's
Affiliate, Ellsworth

\(207\) 667-3626

**Gardiner:**

Gardiner Evaluation Unit, Alzheimer's Care Center, (207) 624-4295 or
1-800-939-3333

**Scarborough:**

Maine Medical Center, Geriatric Center, (207) 871-2847

## Appendix 2.3

**Visiting The Doctor:**

**[Tips For Getting The Person To Go]{.underline}**

**In The Early Stages Of Alzheimer's . . .**

It can be difficult to get a resident to go to the doctor for a
diagnosis or even for a simple check-up. Be patient, but persistent.
Agree with their arguments, but also state your position: "I know you
feel you don't need to see a doctor, but I would feel better knowing
that you have a clean bill of health." In many cases, older adults are
familiar with the symptoms of Alzheimer's and are afraid of getting an
actual diagnosis. You may try to reassure the resident that there are
some treatable conditions that cause similar symptoms (medications,
hearing loss, etc.) Try not to take the resident's disagreements
personally. The following suggestions may help.

-   **Have a caregiver go as a patient, too.** If a friend, family
    member, or caregiver goes for a check-up, too, it may make the
    resident feel more comfortable about going.

-   **Ask the physician to call to schedule an appointment.** Sometimes
    you can work with the resident's doctor's office to set up an
    appointment. For example, the doctor's office might be willing to
    call to encourage the resident to schedule an appointment if he or
    she has not been in to see the doctor for some time. You may want to
    make sure that the doctor is experienced in diagnosing and treating
    dementia.

-   **Get the doctor or pharmacist involved.** Consider telling the
    resident that an evaluation or trip to the doctor is required to
    continue a current prescription.

-   **Call ahead and explain your concerns.** Many individuals in the
    early stages of Alzheimer's behave well in short social situations,
    making it difficult for a doctor to pick up on problems. Call ahead
    and give a description of the resident's behavior, or ask a relative
    or caregiver to do so.

-   **Document your concerns.** Send a faxed copy to the doctor's office
    prior to the appointment.

-   **Ask for an assessment.** Ask the doctor to order an assessment
    visit by a psychiatric nurse from a home health agency. You might
    want to reassure the resident by saying, "Your doctor cares about
    your well-being, so she is sending a nurse to visit you."

*Continued*

**In The Later Stages of Alzheimer's . . .**

As the disease progresses, you may face different obstacles in getting
the resident to see his or her doctor. Obstinate behavior and acting out
may make the trip difficult. The following suggestions may help the trip
go more smoothly.

-   **Keep the message simple.** Get the resident ready to go. If they
    question where they are being taken, play down the visit to the
    doctor's office. You can tell them they are going to the doctor and
    then out for lunch or ice cream. This may take the emphasis off the
    doctor visit. Try to be reassuring, as a trip to the doctor's office
    may be a frightening prospect for the resident.

-   **Arrange for more than one escort.** If possible, arrange for more
    than one person to escort the resident to the doctor's office -- one
    to drive, and one to provide companionship to the resident during
    the ride.

-   **Plan well.** Bring distractions such as snacks or pictures to look
    at. You may want to call ahead to notify the doctor's office that
    the resident may be apprehensive upon arrival at the office.

-   **Use other physical problems as an excuse.** If the resident has
    other ailments, remind him or her that the doctor may be able to
    prescribe something to help alleviate their discomfort.

-   **A prescription may help calm.** If the resident is extremely
    anxious or acting out, a prescription may help make the trip easier.

-   **See if the doctor will do a visit to the residence.** It may be
    rare today, but there are still some visiting physicians. If not the
    doctor, a nurse practitioner or visiting nurse may be able to do an
    assessment and report to the resident's physician, as long as the
    situation at hand is not an emergency.

## Appendix 2.4

**[Reversible Dementias]{.underline}**

**D** rugs

**E** motional (depression)

**M** etabolic (thyroid, elevated calcium or albumin)

**E** yes and Ears (sensory isolation -- problems seeing or hearing)

**N** ormal Pressure Hydrocephalus

**T** umors and other space-occupying lesions

**I** nfections (sinusitis, urinary tract infection . . .)

**A** nemia (vitamin B12 deficiency)

**Appendix 2.5**

**The Three D's:**

**[Delirium, Depression and Dementia]{.underline}**

+----------------+-----------------+-----------------+-----------------+
| **Cha          | **Dementia**    | **Delirium**    | **Depression**  |
| racteristics** |                 |                 |                 |
+----------------+-----------------+-----------------+-----------------+
| Onset          | Slow            | Rapid           | Rapid           |
+----------------+-----------------+-----------------+-----------------+
| Duration       | Usually         | Hours to days   | Generally weeks |
|                | long-term       |                 | to months       |
+----------------+-----------------+-----------------+-----------------+
| Prognosis      | Usually         | Reversible      | Reversible      |
|                | irreversible    |                 |                 |
+----------------+-----------------+-----------------+-----------------+
| Orientation    | Becomes         | Disoriented     | Intact          |
|                | disoriented     |                 |                 |
|                | over time       |                 |                 |
+----------------+-----------------+-----------------+-----------------+
| Mood           | Labile,         | Changes         | Stable -- sad,  |
|                | unstable        |                 | negative        |
+----------------+-----------------+-----------------+-----------------+
| Features       | -   Confusion   | -   Decreased   | -   Sense of    |
|                |                 |     ability to  |                 |
|                | -   Vagueness   |     maintain    |    hopelessness |
|                |                 |     attention   |                 |
|                | -   Suspicion   |                 | -   Feels       |
|                |                 | -               |     worthless   |
|                | -   Poor memory |    Disorganized |                 |
|                |     for recent  |     thinking    | -   Memory      |
|                |     events      |                 |                 |
|                |                 | -   May have    |    disturbances |
|                | -               |     psychotic   |                 |
|                |    Restlessness |     symptoms    | -   Suicide     |
|                |                 |     like        |     thoughts    |
|                | -   Pacing      |                 |                 |
|                |                 |  hallucinations | -               |
|                | -   Agitation   |     and         |  Sleep/appetite |
|                |                 |     paranoia    |     changes     |
|                |                 |                 |                 |
|                |                 | -   Speech      | -               |
|                |                 |     incoherent  |    Irritability |
|                |                 |     at times    |                 |
|                |                 |                 | -   Loss of     |
|                |                 |                 |     interest    |
|                |                 |                 |                 |
|                |                 |                 | -   Apathy      |
+----------------+-----------------+-----------------+-----------------+
| Cognitive      | Impaired        | Ability         | Intact, can be  |
| Function       |                 | fluctuates      | slow            |
+----------------+-----------------+-----------------+-----------------+
| Judgment       | Poor            | Fluctuates      | Appropriate     |
|                |                 |                 | except          |
|                |                 |                 | self-regarding  |
|                |                 |                 | evaluation      |
+----------------+-----------------+-----------------+-----------------+
| Attitude       | Denies          | Unaware of      | Focuses on      |
| toward         | disability;     | disability due  | disability      |
| diagnosis      | attempts to     | to reduced      |                 |
|                | cover up        | level of        |                 |
|                | er              | consciousness   |                 |
|                | rors/disability |                 |                 |
+----------------+-----------------+-----------------+-----------------+

[S]{.smallcaps}ource: *Case/Care Documentation Guidelines,* Alzheimer's
Disease and Related Disorders Association, Inc.

## Appendix 2.6

**[M]{.smallcaps}edications That Cause**

**[Cognitive Changes In The Elderly]{.underline}**

**Anticholinergics**

-   Over-the-counter sleep aids and cold preparations (antihistamines
    like Benadryl)

-   Antiparkinsonian meds (Cogentin, Artane)

-   Antipsychotics

-   Tricyclic antidepressants

-   Atropine

-   Scolpolamine

-   Antispasmodics

**Cardiac and Antihypertensives**

-   Digitalis

-   Nitrates

-   Procainimide

-   Inderal

-   Reserpine

-   Hydralazine

-   Methyldopa

-   Guanethidine

-   Clonidine

**Diuretics**

1.  HCTZ

2.  Furosemide

**CNS Depressants and Anti-Anxiety Meds**

-   Alcohol

-   Diazepam

-   Temazepam (Resoril)

-   Triazolam (Halcion)

-   Ativan

**H2 Receptor Antagonists**

-   Pepcid

-   Tagamet

-   Zantac

*Continued*

**Hormonal Therapies**

-   Thyroid meds

-   Steroids, Corticosteriods

**Hypoglycemics**

**Lithium**

***If you think medication changes may be affecting the resident's
cognitive ability, look for:***

-   Acute changes in mental status, particularly
    [attention,]{.underline} [speech,]{.underline} and
    [orientation]{.underline}

-   Gait disturbances

-   Mood lability, especially irritability

-   Signs and symptoms of delirium

**Appendix 2.7**

# 

# [Alzheimer's Disease and Related Dementias]{.underline}

##### What is Dementia?

Dementia is a loss of mental function in two or more areas such as
language, memory, visual and spatial abilities, or judgment severe
enough to interfere with daily life. Dementia itself is not a disease,
but a broader set of symptoms that accompanies certain diseases or
physical conditions, including Parkinson's disease, Huntington's
disease, Creutzfeldt-Jakob disease, Pick's disease, and Lewy body
dementia. Other physical conditions may cause or mimic dementia, such as
depression, brain tumors, head injuries, nutritional deficiencies,
hydrocephalus, infections (AIDS, meningitis, syphilis) drug reactions,
and thyroid problems. **Individuals experiencing dementia-like symptoms
should undergo diagnostic testing as soon as possible.** An early and
accurate diagnosis helps to identify reversible conditions, gives
patients a greater chance of benefiting from existing treatments, and
allows them and their families more time to plan for the future.

## 

##### 

##### What is Alzheimer's Disease?

Alzheimer's disease (AD) is the most common cause of dementia, affecting
as many as 4 million Americans. AD is a degenerative disease that
attacks the brain, begins gradually, and progresses at a variable rate.
AD results in impaired memory, thinking, and behavior and can last from
3 to 20 years from the time of onset of symptoms. Warnings signs of AD
are memory loss that affects job/home skills, difficulty performing
familiar tasks, problems finding right words, disorientation as to time
and place, poor or decreased judgment, difficulty with learning and
abstract thinking, placing things in inappropriate places, changes in
mood and personality, and marked loss of initiative. In the last stage
of AD, patients are unable to take care of themselves. Recent research
has shown links between particular genes and Alzheimer's disease, but in
about 90% of AD cases, there is no clear genetic link. With the help of
standardized diagnostic criteria, physicians can now diagnose AD with an
accuracy of 85-90% once symptoms occur. However, a definitive diagnosis
of Alzheimer's disease is possible only through the examination of brain
tissue at autopsy.

## 

##### 

##### Multi-Infarct Dementia

Multi-infarct dementia (MID), or vascular dementia, is a deterioration
of mental capacity caused by multiple strokes (infarcts) in the brain.
These events may be described as ministrokes, where small blood vessels
in the brain become blocked by blood clots, causing the destruction of
brain tissue. The onset of MID may seem relatively sudden, as it may
take several strokes for symptoms to appear. These strokes may damage
areas of

*Continued*

the brain responsible for a specific function as well as produce general
symptoms of

dementia. As a result, MID is sometimes misdiagnosed as Alzheimer's
disease. MID is not reversible or curable, but detection of high blood
pressure and other vascular risk factors can lead to a specific
treatment that may modify MID's progression. MID is

usually diagnosed through neurological examination and brain scanning
techniques, such as computerized tomography (CT) scan or magnetic
resonance imaging (MRI).

## 

## 

## Parkinson's Disease

Parkinson's disease (PD) is a progressive disorder of the central
nervous system that affects over one million Americans. In PD certain
brain cells deteriorate for reasons not yet known. These cells produce a
substance called dopamine, which helps control muscle activity. PD is
often characterized by tremors, stiffness in limbs and joints, speech
difficulties, and difficulty initiating physical movement. Late in the
course of the disease, some patients develop dementia and eventually
Alzheimer's disease. Conversely, some Alzheimer's patients develop
symptoms of Parkinson's disease. Medications such as levodopa, which
converts to dopamine inside the brain, and deprenyl, which prevents
degeneration of dopamine-containing brain cells, are used to improve
diminished or reduced motor symptoms in PD patients but do not correct
the mental changes that occur.

## 

## Huntington's Disease

Huntington's Disease is an inherited, degenerative brain disease that
causes both physical and mental disabilities and usually begins in
mid-life. Early symptoms can vary from person to person but include
involuntary movement of the limbs or facial muscles, difficulty
concentrating, and depression. Other symptoms include personality
change, memory disturbance, slurred speech, and impaired judgment.
Children born to a person with HD have a 50% chance of inheriting the
gene that causes HD. Today a genetic test is available to confirm a
diagnosis of HD and to identify carriers of the HD gene. It is
recommended that anyone considering genetic testing talk first with
family and/or appropriate medical and counseling professionals. There is
no treatment to stop the progression of HD, but the movement
disturbances and psychiatric symptoms can be treated with medication.

## 

## Creutzfeldt-Jakob Disease

Creutzfeldt-Jakob disease (CJD) is a rare, fatal brain disorder that
causes rapid, progressive dementia and other neuromuscular disturbances.
CJD is caused by a transmissible agent. Research suggests that the agent
differs significantly from viruses and other conventional agents. This
newly discovered pathogen is called a "prion," short for "proteinaceous
infectous particle," because it consists of protein and transforms
normal protein molecules into infectious ones. The disease can be
inherited, but the

majority of cases are not. Early symptoms of CJD include failing memory,
changes in behavior, lack of coordination. As the disease advances,
usually very rapidly, mental

*Continued*

deterioration becomes pronounced, involuntary movements (especially
muscle jerks) appear, and the patient experiences severe difficulty with
sight, muscular energy, and

coordination. Like Alzheimer's disease, a definitive diagnosis of CJD
can be obtained only through examination of brain tissue.

## 

## Pick's Disease

Pick's disease is also a rare brain disorder, characterized by shrinkage
of the tissues of the frontal and temporal lobes of the brain and by the
presence of abnormal bodies (Pick's bodies) in the nerve cells of the
affected areas of the brain. Pick's disease usually begins between the
ages of 40 and 60. The symptoms are similar to Alzheimer's disease, with
a loss of language abilities, skilled movement, and the ability to
recognize objects or people. Initial diagnosis is based on family
history (Pick's disease may be inherited), symptoms, tests, and ruling
out other causes of dementia. A definitive diagnosis of Pick's disease
is usually obtained at autopsy.

## 

## Lewy Body Dementia

Lewy body dementia (LBD) is an irreversible form of dementia associated
with abnormal protein deposits in the brain called Lewy bodies. Symptoms
of LBD are similar to Alzheimer symptoms and include memory loss,
confusion, and difficulty communicating. Hallucinations and paranoia
also may become apparent in the earlier stages of the disease and often
last throughout the disease process. Although initial symptoms of LBD
may be mild, affected individuals eventually develop severe cognitive
impairment. At this time, there is no treatment available for Lewy body
dementia.

Reprinted from: *Alzheimer's Disease and Related Dementias Fact Sheet,*
Alzheimer's Disease and Related Disorders Association, Inc., 1999.

**Appendix 2.8**

**[Alzheimer's Disease: Facts and Statistics]{.underline}**

### Facts 

###### Definition

Alzheimer's disease (pronounced *AHLZ-hi-merz*) is a disorder that
destroys cells in the brain. The disease is the leading cause of
dementia, a condition that involves gradual memory loss, decline in the
ability to perform routine tasks, disorientation, difficulty in
learning, loss of language skills, impairment of judgement, and
personality changes. As the disease progresses, people with Alzheimer's
disease become unable to care for themselves. The loss of brain cells
eventually leads to the failure of other systems in the body. The rate
of progression of Alzheimer's varies from person to person. The time
from the onset of symptoms until death ranges from 3 to 20 years.

**[What Is Known]{.underline}**

Dr. Alois Alzheimer, a German physician, first described the disease in
1906. He observed in the autopsy of a woman with dementia two kinds of
abnormal structures in the brain that are now recognized as hallmarks of
Alzheimer's disease -- amyloid plaques and neurofibrillary tangles.
Since then, researchers have learned much about how these structures
form, but they do not know exactly what role each structure plays in the
loss of brain cells.

Studies have shown that the greatest known risk for developing
Alzheimer's is increasing age. As many as 10 percent of people 65 years
of age and older have Alzheimer's, and nearly 50 percent of people 85
and older have the disease. A family history of the disease is another
known risk. Having a parent or a sibling with the disease increases an
individual's chances of developing Alzheimer's.

Scientists have identified three genes that cause rare, inherited forms
of the disease that tend to occur before age 65. Investigations of these
genes have provided important clues about the biology of Alzheimer's
that affects older people.

###### Diagnosis

There is no single test to detect Alzheimer's disease. Currently, the
ability to detect abnormal structures in the brain of a living person
does not exist. Therefore, a diagnosis is based on a thorough evaluation
of symptoms and an assessment of an individual's health.

A physician will use a variety of tests to assess memory and thinking
skills and will usually ask for input from a family member about changes
in an individual's memory or behavior. A physician will also conduct a
thorough physical exam, review the individual's medical history, and
order various laboratory tests that may require blood or urine samples
or brain or imaging scans.

All of this information can help physicians identify the most probable
cause of symptoms and rule out treatable conditions that may cause
memory problems or other dementia symptoms. These include depression,
adverse drug reactions, and nutritional deficiencies.

Researchers continue to investigate ways to improve diagnostic tools.
New strategies may lead to earlier diagnoses and, therefore, earlier
treatment.

###### Treatment

There are currently four drugs approved by the U.S. Food and Drug
Administration for treating Alzheimer's disease symptoms --- tacrine
(Cognex®), donepezil (Aricept®), rivastigmine (Exelon®) and galantamine
(Reminyl®). About half of the people taking these medications show
modest and temporary improvement in memory and thinking skills. Vitamin
E is often prescribed because it may inhibit molecular activity
contributing to brain cell damage. Other medications may be prescribed
to treat such symptoms as agitation, anxiety, depression and poor sleep.

Many care strategies and activities can be used to manage behavior,
prevent agitation, and improve the quality of life for people with the
disease. Such strategies may also lessen the stress that caregivers
often experience.

Researchers are pursuing several lines of investigation for developing
new treatments that may delay onset or slow progression of the disease.
Many scientists believe that in the years to come we will have a regimen
of drugs rather than a "magic bullet" for treating people with
Alzheimer's disease and related disorders.

The Alzheimer's Association is the largest national voluntary health
organization dedicated to research for the causes, treatments,
prevention and cure of Alzheimer's disease and to providing education
and support services to people with the disease, their families and
caregivers. A nationwide 24-hour information and referral line links
families who need assistance with nearby local chapters. For information
or help, call 1-800-272-3900 or contact your local chapter.

### Statistics

###### 

###### Economic impact

At some point, persons with Alzheimer's disease will require 24-hour
care, including assistance with daily activities such as eating,
grooming and toileting. The financing of care for Alzheimer's disease
--- including costs of diagnosis, treatment, nursing home care and
formal or paid care --- is estimated to be more than \$100 billion each
year. It's estimated that Alzheimer's disease costs American businesses
more than \$36.5 billion a year due to the absenteeism of caregivers ---
employees who take care of people with the disease --- and the cost of
care.

*Continued*

###### Prevalence

-   Approximately four million people in the United States have
    Alzheimer's disease; 19 million say they have a family member with
    the disease.

-   By 2050, 14 million people in the United States will have
    Alzheimer's, unless a cure or prevention is found.

-   One in ten persons over the age of 65 --- and nearly half of those
    over 85 --- have Alzheimer's disease. A small percentage of people
    in their 30s and 40s also have the disease.

-   The disease process may begin in the brain as much as 20 years
    before symptoms appear. A person with Alzheimer's disease will live
    an average of eight years and as many as 20 years once the symptoms
    appear.

##### 

##### [Costs]{.underline}

-   The average lifetime cost of Alzheimer's disease, per person, is
    \$174,000.

-   The U.S. spends about \$100 billion a year on Alzheimer's disease.
    Neither Medicare nor most private health insurance covers the
    long-term care most patients need.

-   Alzheimer's disease costs American businesses \$61 billion
    annually\--\$36.5 billion is the cost to business of caregiving
    (lost productivity from absenteeism of employees who care for family
    members with Alzheimer's); the rest is the business share of the
    costs of health- and long-term care.

-   More than 7 out of 10 people with Alzheimer's disease live at home.
    Almost 75% of that home care is provided by family and friends. The
    remainder is "paid" care costing an average of \$12,500 per year.
    Families pay almost all of that out-of-pocket.

-   At least half of all nursing home residents have Alzheimer's disease
    or another dementia. The average annual cost of Alzheimer's nursing
    home care is \$42,000 per person, but exceeds \$70,000 per person,
    per year, in some parts of the country.

-   The Alzheimer's Association has granted nearly \$120 million dollars
    in research grants since 1982.

-   In fiscal year 2002, the federal government will spend an estimated
    \$598.9 million on Alzheimer's research.

Source: Alzheimer's Disease and Related Disorders Association, Inc.,
2002.

**Appendix 2.9**

**Is It Alzheimers?**

**[Ten Early Warning Signs]{.underline}**

Some change in memory is normal as we grow older, but the symptoms of
Alzheimer's disease are more than simple lapses in memory. People with
Alzheimer's experience difficulties communicating, learning, thinking,
and reasoning --- problems severe enough to have an impact on an
individual\'s work, social activities, and family life.

The Alzheimer's Association believes that it is critical for people with
dementia and their families to receive information, care, and support as
early as possible. To help family members and health care professionals
recognize warning signs of Alzheimer's disease, the Association has
developed a checklist of common symptoms.

**1. Memory loss.** One of the most common early signs of dementia is
forgetting recently learned information. While it's normal to forget
appointments, names, or telephone numbers, those with dementia will
forget such things more often and not remember them later.

**2. Difficulty performing familiar tasks.** People with dementia often
find it hard to complete everyday tasks that are so familiar we usually
do not think about how to do them. A person with Alzheimer's may not
know the steps for preparing a meal, using a household appliance, or
participating in a lifelong hobby.

**3. Problems with language.** Everyone has trouble finding the right
word sometimes, but a person with Alzheimer's disease often forgets
simple words or substitutes unusual words, making his or her speech or
writing hard to understand. If a person with Alzheimer's is unable to
find his or her toothbrush, for example, the individual may ask for
"that thing for my mouth."

**4. Disorientation to time and place.** It's normal to forget the day
of the week or where you're going. But people with Alzheimer's disease
can become lost on their own street, forget where they are and how they
got there, and not know how to get back home.

**5. Poor or decreased judgment.** No one has perfect judgment all of
the time. Those with Alzheimer's may dress without regard to the
weather, wearing several shirts or blouses on a warm day or very little
clothing in cold weather. Individuals with dementia often show poor
judgment about money, giving away large amounts of money to
telemarketers or paying for home repairs or products they don't need.

**6. Problems with abstract thinking.** Balancing a checkbook may be
hard when the task is more complicated than usual. Someone with
Alzheimer's disease could forget completely what the numbers are and
what needs to be done with them.

**7. Misplacing things.** Anyone can temporarily misplace a wallet or
key. A person with Alzheimer's disease may put things in unusual places:
an iron in the freezer or a wristwatch in the sugar bowl.

**8. Changes in mood or behavior.** Everyone can become sad or moody
from time to time. Someone with Alzheimer's disease can show rapid mood
swings---from calm to tears to anger---for no apparent reason.

**9. Changes in personality.** People's personalities ordinarily change
somewhat with age. But a person with Alzheimer's disease can change a
lot, becoming extremely confused, suspicious, fearful, or dependent on a
family member.

**10. Loss of initiative.** It's normal to tire of housework, business
activities, or social obligations at times. The person with Alzheimer's
disease may become very passive, sitting in front of the television for
hours, sleeping more than usual, or not wanting to do usual activities.

If you recognize any warning signs in one of your residents, the
Alzheimer's Association recommends consulting a physician. Early
diagnosis of Alzheimer's disease or other disorders causing dementia is
an important step in getting appropriate treatment, care, and support
services.

Source: Alzheimer's Disease and Related Disorders Association, Inc.
Updated 10/02.

**Appendix 2.10**

**[Stages and Symptoms]{.underline}**

+-------------------+--------------------------------------------------+
| **Stage One:**    | **Symptoms Include:**                            |
|                   |                                                  |
| Two-to- four      | -   Anxious about symptoms                       |
| years in          |                                                  |
| duration. During  | -   Forgetful --- loss of short-term memory      |
| this stage, the   |                                                  |
| individual with   | -   Problems at work involving poor judgment     |
| Alzheimer's may   |                                                  |
| still be working  | -   Decline in grooming                          |
| or living alone.  |                                                  |
|                   | -   Repeats a lot, trouble finding right words   |
|                   |                                                  |
|                   | -   Trouble managing money                       |
|                   |                                                  |
|                   | -   Mild disorientation                          |
|                   |                                                  |
|                   | -   Mood swings                                  |
|                   |                                                  |
|                   | -   Easily angered, frustrated                   |
|                   |                                                  |
|                   | -   Slower to learn and slower to react          |
|                   |                                                  |
|                   | -   Loses zest for life                          |
+-------------------+--------------------------------------------------+
| **Stage Two:**    | **Symptoms Include:**                            |
|                   |                                                  |
| Two-to- ten years | -   Repeats more                                 |
| in duration,      |                                                  |
| marked by         | -   Lives in the past                            |
|                   |                                                  |
| increased memory  | -   Slower gait, some shuffling                  |
| loss and          |                                                  |
| confusion. The    | -   Unable to recognize people                   |
| person with       |                                                  |
| Alzheimer's may   | -   Difficulty communicating, finding words      |
| still be          |                                                  |
| functioning in    | -   Difficulty reading                           |
| some ways, but    |                                                  |
| needs more help.  | -   Increased fears, paranoia                    |
|                   |                                                  |
|                   | -   Bowel and bladder problems                   |
|                   |                                                  |
|                   | -   Sleep disturbances                           |
|                   |                                                  |
|                   | -   Increased motor problems, difficulty using   |
|                   |     objects                                      |
|                   |                                                  |
|                   | -   Needs assistance with Activities of Daily    |
|                   |     Living (ADLs)                                |
|                   |                                                  |
|                   | -   Restlessness in afternoon/evening            |
|                   |                                                  |
|                   | -   Agitation                                    |
|                   |                                                  |
|                   | -   Possible hallucinations or delusions         |
|                   |                                                  |
|                   | -   Forgets when last meal was eaten, may lose   |
|                   |     interest in food                             |
+-------------------+--------------------------------------------------+
| **Stage Three:**  | **Symptoms Include:**                            |
|                   |                                                  |
| During this time, | -   Unable to carry on any meaningful            |
| the person with   |     conversation                                 |
| Alzheimer's will  |                                                  |
| be almost         | -   Incontinent, dependent on caregiver for all  |
| entirely          |     personal needs                               |
| dependent on      |                                                  |
| others for daily  | -   Mis-identifies people and objects            |
| needs and care.   |                                                  |
|                   | -   May have increased or decreased appetite,    |
|                   |     gains or loses weight, eventually loses      |
|                   |     weight                                       |
|                   |                                                  |
|                   | -   Falls frequently                             |
|                   |                                                  |
|                   | -   Difficulty swallowing                        |
|                   |                                                  |
|                   | -   May have seizures                            |
|                   |                                                  |
|                   | -   Sleeps more                                  |
|                   |                                                  |
|                   | -   Increased frailty                            |
|                   |                                                  |
|                   | -   Probably becomes bedridden                   |
+-------------------+--------------------------------------------------+

**Appendix 2.11**

**[Facts About Cholinesterase Inhibitors]{.underline}**

**Medications Currently Prescribed**

All of the prescription medications currently approved by the U.S. Food
and Drug Administration (FDA) to treat cognitive Alzheimer's symptoms
are in a class of drugs called cholinesterase inhibitors. Three
cholinesterase inhibitors are commonly prescribed---donepezil
(Aricept®), approved in 1996, rivastigmine (Exelon®), approved in 2000,
and galantamine (Reminyl®), approved in 2001. Tacrine (Cognex®), the
first drug in this class, was approved in 1993 but is rarely prescribed
today because of associated side effects, including possible liver
damage.

### How They Work

Cholinesterase inhibitors are designed to enhance memory and other
cognitive functions by influencing certain chemical activities in the
brain. Acetylcholine is a chemical messenger in the brain that
scientists believe is important for the function of brain cells involved
in memory, thought, and judgment. Acetylcholine is released by one brain
cell to transmit a message to another. Once a message is received,
various enzymes, including one called acetylcholinesterase, break down
the chemical messenger for reuse.

In the Alzheimer's-afflicted brain, the cells that use acetylcholine are
damaged or destroyed, resulting in lower levels of the chemical
messenger. A cholinesterase inhibitor is designed to stop the activity
of acetylcholinesterase, thereby slowing the breakdown of acetylcholine.
By maintaining levels of acetylcholine, the drug may help compensate for
the loss of functioning brain cells.

Galantamine also appears to stimulate the release of acetylcholine and
to strengthen the way that certain receptors on message-receiving nerve
cells respond to it.

### Potential Benefits

Donepezil and rivastigmine were associated with better performance in
memory and thinking tests among patients who were given the active
medication compared with those patients taking a placebo (an inactive
substance). It should be stressed that improvement was modest, and more
than half of the patients showed no improvement at all.

Galantamine also resulted in modest improvements in clinical trials.
Additional research will help scientists determine how many individuals
are likely to benefit from the drug.

### Dosages

Donepezil (Aricept®) is a tablet and can be administered once daily.
Generally, the initial dose is 5 mg a day (usually given at night).
After four to six weeks, if it is well tolerated, the dose is often
increased to the therapeutic goal of 10 mg a day.

Rivastigmine (Exelon®) is available as a capsule or as a liquid. The
dosage is gradually increased to minimize side effects. Usually the
medication is started at 1.5 mg daily. After two weeks the dosage is
increased to 1.5 mg twice a day. The therapeutic goal is to increase the
dosage gradually every two weeks to reach 6 to 12 mg a day. There is a
greater frequency of side effects at these higher doses; however, taking
drugs with meals may be helpful in reducing the occurrence of side
effects.

Galantamine (Reminyl®) became available in pharmacies in May 2001. It is
supplied in the form of tablets in strengths of 4, 8, and 12 milligrams.
Consult a physician to discuss the recommended regimen for this drug.

### Possible Side Effects

### Generally, donepezil is well tolerated. Because experience with rivastigmine and galantamine is limited, it is unknown how well these drugs will be tolerated in the general population. Symptoms such as nausea, vomiting, loss of appetite, and increased frequency of bowel movements may be expected with any cholinesterase inhibitor. It is strongly recommended that a physician who is comfortable and experienced in using these medications monitor patients treated with any of these compounds and that the recommended guidelines be strictly observed. There is no evidence or reason to believe that combining the drugs would be any more beneficial than taking either one alone, and it is likely that combining the drugs would result in greater side effects.

Source: Alzheimer's Disease and Related Disorders Association, Inc.,
2002. Prepared by John C. Morris, MD, Professor of Neurology, Washington
University, St. Louis, Missouri. This fact sheet is provided for your
information only and does not represent an endorsement of tacrine,
donepezil, rivastigmine, or galantamine by the Alzheimer's Association.

**Appendix 2.12**

**[Choosing A Medication]{.underline}**

**Which Medication Is The Best?**

Family caregivers ask this question frequently and for very good
reasons. They want to take advantage of the best treatment options
available, and the emotional and financial burdens of Alzheimer care
require that they be both informed caregivers and wise consumers. There
is, unfortunately, no easy way to answer this important question. It is
possible, however, to answer a slightly different question: What do I
need to know about current Alzheimer medications when discussing
treatment options with a physician?

An important piece of information to remember is that the four drugs
currently approved by the U.S. Food and Drug Administration for treating
mild to moderate Alzheimer's disease belong to a single class of drugs.
This means that although the primary active ingredient is different in
each of the drugs, they are all designed to perform the same general
function in the body. This class of drugs, called cholinesterase
inhibitors, currently includes galantamine (Reminyl®), donepezil
(Aricept®), rivastigmine (Exelon®), and tacrine (Cognex®).

### 

### How Cholinesterase Inhibitors Work

In regions of the brain important for memory, thought, and judgment,
many cells communicate by means of a chemical messenger called
acetylcholine. Normally, acetylcholine is produced by these brain cells,
released to carry signals, and then broken down for reused by various
enzymes. When brain cells are damaged in Alzheimer's disease, less
acetylcholine is produced and the brain's communication network is
disrupted.

Cholinesterase inhibitors block the action of acetylcholinesterase, one
of the enzymes responsible for breaking down acetylcholine. When the
inhibitors work as intended, more acetylcholine remains active in the
cell-to-cell communications system. To a certain degree, the boosted
levels of the chemical messenger may compensate for the loss of
functioning cells. The drugs, therefore, do not slow or reverse the
progression of the disease, but they may contribute to modest
improvements in thinking and reasoning skills, memory, and activities of
daily living.

### Variations In Outcomes

Responses to most medications vary for reasons that we do not fully
understand. This circumstance is common in all drug treatments. For
example, many common over-the-counter pain medications belong to the
same class of drugs. Ibuprofen may work better for one individual, while
naproxen may be better for another, and neither of these drugs may be as
effective for a third individual.

*Continued*

These same variations in response are also evident with Alzheimer's
medications. If a drug has little or no effect on a patient's symptoms,
a physician may try one of the others. Studies have shown that as many
as 50 percent of people taking cholinesterase inhibitors may derive no
benefit at all.

### 

### Variations In Side Effects

All of the cholinesterase inhibitors may cause such side effects as
nausea, vomiting, loss of appetite, and increased frequency of bowel
movements. Tacrine can also contribute to liver damage. For this reason,
physicians prescribe this drug less frequently than the others.
Donepezil is generally well tolerated by patients. In clinical trials,
rivastigmine was also well tolerated, but because the drug only became
available in mid-2000, little is known about how it will be tolerated in
the general population. Weight loss is known to occur in some patients
taking rivastigmine. Galantamine's recent introduction precludes further
details about long-term effects.

These factors do not necessarily indicate which is the "best" drug. Side
effects can vary from one patient to the next, just as effectiveness
will vary. For one individual, one drug may be more effective but have
greater side effects. For another patient, the same drug may be less
effective but have no side effects. More side effects may occur if two
or more of the drugs are take simultaneously.

### 

### Questions For The Physician

Clear and thorough communications between the physician and the patient
or caregiver is essential in making a decision about what drug to take.
Ask the physician the following question as you discuss treatment
options.

-   What kind of assessment will you use to determine if the drug we
    decide to use is effective?

```{=html}
<!-- -->
```
-   How much time will pass before you will be able to assess the drug's
    effectiveness?

```{=html}
<!-- -->
```
-   How will you monitor for possible side effects?

```{=html}
<!-- -->
```
-   Is one treatment option more likely than another to interfere with
    medications for other conditions?

```{=html}
<!-- -->
```
-   What are the concerns with stopping one drug treatment and beginning
    another?

```{=html}
<!-- -->
```
-   At what stage of the disease progression would you consider it
    inappropriate to continue use of any of the treatment options?

These questions will not cover all the circumstances of an individual's
treatment needs, but they may help determine which drug is best for that
person's needs. The answers to these questions will help you understand
the options and equip you to make one of the difficult decisions of
Alzheimer's care.

Source: Alzheimer's Disease and Related Disorders Association, Inc.
2001. Prepared by Jeffery Cummings, MD, Professor of Neurology,
Professor of Psychiatry and Biobehavioral Sciences, and Director of the
Alzheimer's Disease Center at the School of Medicine at the University
of California at Los Angeles (UCLA).