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Kristin Martin-Cook M.S. and Myron F. Weiner M.D.
Alzheimer's Disease Center
UT Southwestern Medical Center at Dallas
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DEMENTIA OVERVIEW
The term dementia means a person has impaired ability to think, reason, or
remember to the point that it affects their ability to function in activities of daily living.
Persons with dementia and their families often have a high quality of life for many years,
depending how they deal with the problems and changes that occur within each person and
the relationship between family members. It is a process of dealing with increasing
impairment and need for help.
The most common cause of dementia is Alzheimer disease (AD), one of the most
common chronic illnesses of late life. By age 80, between 20% and 40% of Americans
develop the disease, and it is the 80-year-plus portion of our population that is growing most
rapidly. Based on these facts, it seems reasonable to expect that most of us will live with AD
one way or another; by developing the disease or by caring for someone who is affected.
A less common form of dementia is so-called frontotemporal dementia; a collection
of diseases (including Pick disease) that primarily damage the front part of the brain (AD
affects the sides of the brain). In contrast to AD, in which the initial problems are related to
memory, the problem in most persons with frontotemporal dementia is loss of judgment,
with memory difficulty developing later. Some individuals with frontotemporal dementia
have their first difficulties related to either expressing or understanding words. The other
common cause of dementia is due to a condition that resembles Parkinson disease, and is
called dementia with Lewy bodies because of the characteristic small, round bodies that
develop in brain cells. In this disease, Parkinson-like symptoms such as problems with
balance occur, as well as, sleep and mood disturbances.
Caring for a person with dementia is
said to be more stressful than caring for
persons with many other chronic illnesses.
The following suggestions may help those
coping with dementia.
Families are interested in helping their
loved ones maintain a high quality of life
and to retain their ability to function as
long as possible. For these reasons, we
recommend exercise in moderation, food
intake adequate to maintain weight, social
interaction to the extent that is comfortable
to the patient, and so-called “brain
exercises” such as crossword puzzles,
keeping up with current events, or
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practicing language skills to the extent that they are enjoyable. There is no strong evidence
that any form of diet, physical or mental exercise has an important effect on the course of
any dementia, but we encourage families to continue to do what they feel is of value.
-Determining the severity of dementiaA commonly used measure for the severity of impairment is the Mini-Mental State Exam
(MMSE), which ranges from 0 (severely impaired) to 30 (little to no impairment). Your
physician may refer to this number.
AD is a unique disease in that no two cases are the same- symptoms can present with much
fluctuation and individuality; however, certain symptoms can be loosely grouped into the
following stages:
 Early/Mild – average length is 1-3 years; memory loss primarily, with some changes
in complex brain function (multi-tasking, learning new things, integrating a lot of
information); some difficulty with complex activities of daily living like balancing
checkbook, driving may become an issue, desire to socialize in smaller groups
 Middle/Moderately impaired – average length is 5-7 years; increased language
difficulties (word finding, writing, comprehension); difficulty with abstracting (time),
increased repetitiveness, may lack awareness of problems, may need prompts to care
for oneself (wears same thing over and over, not as attentive to hygiene); behavioral
and personality changes are most common during this stage (irritability, frustration,
agitation)
 Late/Severely impaired – average length of time is 2-3 years, but is highly dependent
on the quality of physical care provided; gradual inability to care for basic needs
without assistance, disorientation to people and places, finally motor losses (falling,
trouble walking); speech and language are impaired (trouble understanding words,
and difficulty putting together words in a meaningful way).
Like all of us, people who have a dementing illness will have strengths and weaknesses which
do not decline in a uniform manner. A person may have severely impaired new learning
and short term memory, while remaining able to reason and discuss things in detail. It is
often possible to maximize use of preserved skills in order to compensate for deficits in
cognition.
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-Treatments Cholinesterase inhibitors (Aricept, Cognex, Exelon,
Razadyne)-not a cure, but do help most patients function
better for longer, slow down the progression of symptoms by
increasing the availability of acetylcholine, an important
neurotransmitter, in the brain.
 Memantine / Namenda – This drug regulates levels of glutamate, an important
chemical affecting the function of the cellular system and may reduce excitotoxicity in
the brain. This drug is generally used in conjunction with the standard of care,
Cholinesterace inhibitor whenever possible.
 Vaccine ??? – some initial trials discontinued due side effects; however, several
different forms of vaccine are in development with numerous studies in patients
underway and recruiting new patients.
 Antidepressants: Activating or sedating; chosen based on symptoms/purpose. These
drugs are helpful for reducing frustration and irritability and may help people
concentrate and function better.
 Antipsychotic medications/anti-anxiety medications: for agitation, delusions,
hallucinations or sleep problems
 Be careful about using over the counter medications for sleep - many medications
make people more confused
LONG-TERM PLANNING
It is difficult to plan for the future by making financial and legal arrangements, but now is
the time, as soon as there is a diagnosis and while the person with dementia is able to
personally and legally engage in the decision making process.
Legal things to consider: - take care of legal issues now while the person with AD can
participate in the process rather than waiting until a legal issue comes up; it may be too late
for the person to execute a legal document if you wait.
 Wills - designate how a persons assets will be distributed at the time of their death
 Living wills – how you want to be cared for at certain critical points near the end of life
(life-prolonging treatment)
 Medical and Durable power of attorney (MUST HAVE) - allows you to select the
person you want to make legal, financial or medical decisions on your behalf when you
are no longer able to do so. Can be broad or specific in stating what the appointed
person can do or not do.
 Living Trust - an individual is given the right to manage some or all of another person’s
assets which are held in a trust with certain guidelines attached regarding how the money
or assets should be used.
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 Guardianship - legal action taken if the person with dementia is no longer able to make
legal decisions (execute legal documents) and needs someone appointed to make
decisions for them.
Dallas Volunteer Attorney Program -In addition to sponsoring Debt
Counseling Clinic, Legal Clinic for the Elderly, and Mental Health
Law Clinic, the Dallas Volunteer Attorney program provides
telephone referral of low-income Dallas County residents to
volunteer attorneys who provide free legal services. Voice: (214) 7425768 www.dallasbar.org/dvap
The Area Agency on Aging (AAA) provides legal assistance through a
contract with an attorney for individuals identified and referred by AAA staff. Call the AAA
at 214-871-5065
www.nctcog.org/cs/aging/older_adults_info.asp
Financial things to consider:
 Insurance policies - who knows about them and where info is kept
 Stock and bonds - who knows about them and where info is kept
 Medicare-covers hospital, doctors bills, rehab, hospice but
NOT ASSISTANCE WITH DAILY CARE OR SUPERVISION
 Medicaid-income/need based, provides some financial assistance with day care, home
health, nursing home
 Spousal impoverishment - means that the spouse of a patient needing care is allowed
to keep their home, certain assets and moneys to support their own needs despite the
patient needing to spend down other assets in order to qualify for federal and state
financial programs like Medicaid and Community Based Alternatives.
Community resources:
You are not alone. There are many services available to you to aid in coping with caregiving.
 Alzheimer Association Dallas (214) 827-0062/ www.alz.org
 Adult Day Programs/Centers - place for cognitively impaired elders who need
supervision and structured activities
-Friends Place – independent, private pay program in Richardson
972-437-2940
-Casa de Vida – activity and respite program at Northpark Presbyterian
Church 972-783-8780
-Treasured Times – activity and respite program at Custer Rd.United
Methodist Church 972-618-3450
-many assisted living and nursing facilities offer Adult Day Programs as
well
 In home help - companions/sitters on average cost approximately $17.00 per hour
through many home health agencies in community
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 In-patient respite - many long term care facilities will take a patient temporarily (for days
to a couple weeks to give the caregiver a break or allow them to travel)
 Hospice – offers many services such as medications, in home health care visits and
equipment all for maximizing a persons comfort near the end of life
 Veterans benefits - low-cost medication program, home health, nursing home care
 For help finding specific companies, services and facilities you can go online to
www.newlifestyles.com
Questions when evaluating a facility:
1. What type of payment is accepted? (do they have Medicaid beds, accept VA benefits)
2. Do they have specialty/Alzheimer's care?
Locked unit, appropriate dementia training, relatively stable long-term staff
3. Are care plan meetings held at a time that family can attend?
4. Are they flexible - ask how they will deal with situations that you have
experienced with your loved one (trouble with using fork, wanting to go home…)
5. How much staff and what type (nurses, aides) are there at different times of day?
6. Visit without making an appointment. Note whether the patients look kept, content, and
seem comfortable talking with the staff. Do the patients seem to want to be around the
staff?
7. Activities are great if you can engage in them and enjoy them, but are not universally of
benefit to or appreciated by everyone, especially persons with dementia.
8. What is the basic care routine? Where is bathing done, is it a comfortable, warm place?
9. You can compare nursing homes and obtain inspection results at:
www.medicare.gov and other online resources www.elderhope.com
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BEHAVIOR MANAGEMENT
Behavioral changes are not uncommon but very individual. Some behaviors that are
common are: wandering, pacing, making up stories (people are stealing…), over-reacting,
irritability, impatience, shadowing the caregiver
***The key to understanding and managing behaviors is to identify and adjust the
factors that trigger and maintain the behavior. It is always easier to anticipate and
prevent a problem than to fix while it is occurring***:
 1. Define the behavior – be specific about what behavior is really a problem
 2. Identify what is happening before or what triggers the behavior (ask yourself who,
what, when, where does this happen…)
Interactive factors - how are the too of you interacting
What are you asking of the person (too many steps involved, task appropriate to
abilities, feelings about that task); how are you asking (tone of voice, touch, language);
when are you asking (already agitated, time of day)
Environmental factors - what is happening around the person
Is there too much noise; not enough light; are the surroundings unfamiliar;
is there too much clutter
 3. By identifying behaviors, triggers and consequences you can understand,
anticipate, plan for, and decrease the occurrence of problem before they occur.
General Guidelines
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Don’t expect the person with dementia to learn or to remember.
Fill for memory deficit; don’t point it out or try to improve it.
Help in word-finding by suggesting the word being sought.
Keep decision-making at a level that fits the person’s ability to function.
Ask persons with dementia to do only one thing at a time, and repeat.
Augment verbal requests or instructions with physical guidance and
demonstration.
When persons with dementia are frustrated, take a break rather than
explaining.
Allow persons with dementia to do as much of what they wish to do as they
can
Avoid contest of wills.
Don’t leave things in sight that you don’t want to be picked up and lost
When something is lost, look for it; don’t ask where it is.
Develop a predictable daily routine, including pleasant activities and
exercise.
Keep explanations short and be willing to repeat.
Focus on use of the person’s over-learned skills and routines.
Avoid unfamiliar activities, situations and places.
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HOME SAFETY AND ENVIRONMENT
Three Principles of Home Safety
1. Prevention - we can not predict the future but we can anticipate possibilities. Even with
careful planning, accidents can happen. However, checking the safety of the home helps the
families take control of some of the potential problems that may create hazardous situations.
2. It is more effective to change the environment than it is to
attempt to change the behavior of the person with cognitive
problems. When someone's memory is impaired, so is their
ability to learn and reason through multiple steps.
3. By minimizing danger you can maximize independence. A
safe environment is a less restrictive environment. The person
with dementia can experience increased security and more
mobility. It also lessens the caregiver's need for constant close
supervision, thus reducing time, attention and stress in the
caregiving task.
Examples:
A. Prevention--for example, if we think ahead, we can prevent falls by removing
unanchored rugs, unsturdy furniture, and clutter in walkways. We can also prevent
problems sometimes by providing assistive devices like, walkers, canes, bath
rails...safe return program (a program of registering people who might become lost so
they can be helped back home.)
B. Changing the environment rather than the person.-- for example, remove mirrors if
they cause confusion. Don’t argue that pills have already been taken just remove pills
from sight once taken. Establish routines and systems that compensate for memory
problems.
C. Minimizing danger can maximize independence. -- for example, removing potentially
dangerous things from the kitchen like the knobs from the stove, putting away
dangerous chemicals and medications, picking up unanchored rugs, and taking
weapons out of the home, make it more safe for the person with AD to access the
house independently without family members feeling a need to provide constant
supervision.
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Environmental Variables to Maximize Awareness, and Orientation/using cues to
increase functioning
1) Use memory aids/prompts. For example, large simple calender with daily
routine or written reminders on it, label drawers to identify the location of clothing
items and doors to direct a persons attention to important places like the bathroom.
Provide a list (simple and organized) of important or frequently used telephone
numbers near the phone.
2) Use multiple cues that relate to different abilities and senses. For example, pictures,
colors, and words to identify the bathroom and differentiate it from other
rooms/doors.
3) Desired activities and/or locations should be easy to access and obvious.
For a person with AD things that are out of sight are often out of mind. The person
with AD is frequently unable to initiate, without cues, an activity and subsequently go
look for the materials. For example, putting out old pictures or coins on the table
may prompt a usually apathetic person to focus on sorting or reminiscing.
Back to safety. PROVIDE FOR SAFE but FREE environment. Unrestricted access to
the environment encourages autonomy and independence. A secured and safe outside area
is important also--research has shown a decrease in agitation when doors to the outside are
left unlocked with access to an outside area.
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We have
some general
suggestions for
caregivers’ self management:
 Accept the person with dementia for who he is instead of trying to restore him to
who he was.
 You have as much right to a life as does the person you are caring for.
 To the extent that you feel the need and are able to do so, take time for yourself.
 To the extent compatible with your values and the needs of the person with AD,
develop a separate life of your own.
 Begin thinking of ways to have others share the caregiving with you, such as
becoming a part of a group that is supportive of you, whether it be an Alzheimer’s
Association support group or an informal group of caregivers.
 Include your children; they don’t need to be protected and usually want to know how
they can be involved.
 If you feel depressed, seek treatment. You’ll feel better and you’ll do a better job or
providing care.
 Try not to endanger your own health.
 Remember that if you fail to take care of yourself, there may be no one else left to
care for your loved one.
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CAREGIVER ISSUES
Common/Normal caregiver emotions:
 Grief and/or Depression about losses in the person and life
expectations
 Guilt about everything, not being patient enough, not knowing how
to handle things or about being well when my loved one is
struggling
 Resentment and/or anger about the disease and even the person
with AD
What makes you feel bad?
 Anticipation – live a day or problem at a time. It sounds “corny”
but aside from taking care of some basic legal and financial decisions and problems as they arise,
trying to anticipate what life or your loved one will be like in months or years may not be accurate
and will lead to nothing productive. Worrying excessively about next year will rob you of the time
you have now with each other. Live the moments you have.
 Pick your battles – if it really doesn’t matter then don’t sweat it. Often we get caught up in the
performance of a task, or the way things “should” be and end up arguing, getting upset or missing
an opportunity over something that didn’t really matter.
Developing a coping plan to use when feeling overwhelmed:
 Coping thoughts - say to yourself:
“Been there done that!; What do I need to take care of this - make a plan of action;
What is the worst thing that could happen?; What would I say to a friend in this
Situation?; Does it really matter?
 Have a support system in place so you know who and where to turn when you need a break
 Realistic Expectations (of you and the patient) / Know your limits
 Pleasant Events - with and without the person with dementia
Try to build in events that you can enjoy together without being the "caregiver."
 Prioritize and relax - in the end do what is important and let the rest slide for now.
 Stress relievers – talk to someone, physical exercise, get away for a while, massage, take a nap, listen
to music, imagery-sit quietly and think of a happy memory and view the memory in detail, use other
methods of stress reduction that you can learn more about in books or internet
 Join a support group near you www.alz.org/greaterdallas
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ACTIVITIES
Everyone can do something and everyone enjoys doing something. Activities serve many purposes but
generally they should:
Empower - be an opportunity to express oneself in some way, give responsibility and a sense of control
and contribution
Maintain - use intact or maintained cognitive, social or physical skills
Structure - provide a comfortable amount of stimulation, promote success, and give an
opportunity to relate to others.
Almost any activity can be modified into doable tasks for a person at any level of skill or impairment.
List of Activities (everyday activities)
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Clip coupons
Cards/games
Organize or rummage through drawers
Exercise
Plant seeds (window boxes)
Water plants
Weed the garden
Sweep
Rake leaves
Cut and arrange flowers
Vacuum
Fold clothes
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Dust
Roll or sort coins
Feed animals (even just a fish)
Sort, test, sharpen pens/pencils
Groom pets
Baking (or at least stirring)
Roll yarn into a ball
Sewing buttons or on material
Sand wood(for frustrated workers)
Sort bottles, papers for recycling
And many, many more…
Help in the kitchen (wash veggies, peel and cut fruit, mix, fill salt and pepper shakers)
Painting (not masterpieces maybe but appropriate craft items like blocks of wood)
Think simplicity and repetitive - any activity that involves doing only 1 or 2 steps over and over and over.
Successful use of activities means focusing on the
doing rather than the completion or end product.
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HELPFUL HINTS
Following is a list of some common problems and basic care ideas, excerpted from a handout
published by the Alzheimer’s Disease and Related Disorders Association Greater Philadelphia
Chapter, Inc.
Wandering
1. Establish regular times for daily activities:
meals, chores, bed
2. Gauge activity level to patients’ tolerance.
3. Always make sure that patients have in
their possession a card containing their
home address and phone number. They
should wear a medic-alert bracelet
identifying them as “memory impaired.”
4. Use a simple sound system (bells, for
example) so that you will know patients
have gone out the door.
5. Ask neighbors to call you if they see
patients on the street unaccompanied.
6. If possible, give patients time to walk
around, to go into the yard, and so forth.
Give in, to some degree, to their desire to
wander.
7. Divert patients into their activities such as
dusting, folding laundry, or yard work.
2.
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5.
Provide adequate exercise during the day.
Have a simple, consistent bedtime routine.
Use a night light.
Consider sleep medications or small
amounts of beer, wine, or sherry at
bedtime. (Talk with your physician about
this.)
6. Limit fluids after dinner.
Difficulty in Communication
1. If unable to understand patients’ behavior,
attempt to understand the emotion behind
it.
2. Ask patients to stop, relax, and speak
slowly.
3. Do not criticize the speech itself.
4. Speak distinctly in short, simple sentences
when talking with patients.
5. Be calm and reassuring.
6. Do not speak in a loud voice.
7. Maintain eye contact and use touch.
Memory Problems
Establish a system that supports a reality
orientation.
These include:
1. A clock with large numbers.
2. An easy-read appointment calendar with
large letters and numbers.
3. A chalkboard or bulletin board for
recording the daily schedule.
4. A place for frequency used items such as
keys, hearing aids, and eyeglasses.
Insomnia
1. Restrict nap time.
Catastrophic Reactions (Strong Emotional
Response)
1. Respond to the emotion expressed.
2. Be calm and use a quiet tone of voice.
3. Redirect patients to another activity or
another room.
4. Avoid similar situations that may cause
this reaction.
5. Remember that the reaction is time
limited.
6. Remember that restraining patients will
probably make matters worse.
Worsening in the Evening
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1. Leave lights on.
2. Tell patients where they are and what is
happening.
3. Plan the day so that fewer things are
expected of patients on the evening.
4. Provide a calm environment.
5. Plan your day so that you are reasonably
rested and not too pressed for time.
Nervousness and Restlessness
1. Respond calmly and gently.
2. Attempt to determine the cause of
restlessness, for example, pain or the need
to urinate. Simplify what is going on
around the patients.
3. Respond with an appropriate substitute
activity. For example, take patients for a
walk or provide a simple task.
4. Avoid beverages with caffeine.
5. Consult your doctor about the use of
medication.
Suspiciousness
1. Keep in mind that accusations of stealing
are common.
2. Remember, patients cannot control this
behavior.
3. Do not argue or confront patients; be
reassuring.
4. Together, make a list of where things are.
5. Offer to help patients find the lost article.
Anger
1. Respond calmly
2. Remove patients from the situation or
remove the upsetting stimulus.
3. Look for the event that precipitated the
reaction so you can prevent or minimize a
recurrence.
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EMERGENCY MEDICAL INFORMATION
Name:
________________________________________
Date of Birth: _____________________
Address: ________________________________________
SS #: ____________________________
________________________________________
Male _______
Female______
Phone: ________________________________________
Family/EMERGENCY Contacts:
(name,phone,relationship)______________________________________________________________________
______________________________________________________________________
Medical history or diagnoses: (check and add details if appropriate)
____Memory or cognitive problems ____________
____Seizures
____Heart condition ________________________
____Cancer _______________________________
____Asthma
____Delirium
Current medication/vitamins
Use
____Blood Pressure
____HIV
____Anemia
____Diabetes
____Stroke: ______________________________
____Other: ______________________________
Dose
Name of Primary doctor: _____________________________
/ frequency
Location kept in house
address: _____________________________________
Name of other treating doctor: ____________________________ address: ___________________________________
Allergies:
________________________ ____________________________
________________________ ____________________________
Medical Insurance Coverage information: _______________________________________________
_______________________________________________
PLACE ON REFRIGERATOR, WALLET AND GLOVE COMPARTMENT OF CAR
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