Caring for a person with Alzheimer's disease (AD) at home is a
difficult task and can become overwhelming at times. Each day brings
new challenges as the caregiver copes with changing levels of
ability and new patterns of behavior. Research has shown that
caregivers themselves often are at increased risk for depression and
illness, especially if they do not receive adequate support from
family, friends, and the community.
One of the biggest struggles caregivers face is dealing with the
difficult behaviors of the person they are caring for. Dressing,
bathing, eating--basic activities of daily living--often become
difficult to manage for both the person with AD and the caregiver.
Having a plan for getting through the day can help caregivers cope.
Many caregivers have found it helpful to use strategies for dealing
with difficult behaviors and stressful situations. Following are
some suggestions to consider when faced with difficult aspects of
caring for a person with AD.
Dealing with the Diagnosis
Finding out that a loved one has Alzheimer's disease can be
stressful, frightening, and overwhelming. As you begin to take stock
of the situation, here are some tips that may help:
Ask the doctor any questions you
have about AD. Find out what treatments might work best to
alleviate symptoms or address behavior problems.
Contact organizations such as the
Alzheimer's Association and the Alzheimer's Disease Education
and Referral (ADEAR) Center for more information about the
disease, treatment options, and caregiving resources. Some
community groups may offer classes to teach caregiving,
problem-solving, and management skills.
Find a support group where you can
share your feelings and concerns. Members of support groups
often have helpful ideas or know of useful resources based on
their own experiences. Online support groups make it possible
for caregivers to receive support without having to leave
Study your day to see if you can
develop a routine that makes things go more smoothly. If there
are times of day when the person with AD is less confused or
more cooperative, plan your routine to make the most of those
moments. Keep in mind that the way the person functions may
change from day to day, so try to be flexible and adapt your
routine as needed.
Consider using adult day care or
respite services to ease the day-to-day demands of caregiving.
These services allow you to have a break while knowing that the
person with AD is being well cared for.
Begin to plan for the future. This
may include getting financial and legal documents in order,
investigating long-term care options, and determining what
services are covered by health insurance and Medicare.
Trying to communicate with a person who has AD can be a
challenge. Both understanding and being understood may be
simple words and short sentences and use a gentle, calm tone of
Avoid talking to the person with AD
like a baby or talking about the person as if he or she weren't
Minimize distractions and
noise--such as the television or radio--to help the person focus
on what you are saying.
Call the person by name, making
sure you have his or her attention before speaking.
Allow enough time for a response.
Be careful not to interrupt.
If the person with AD is struggling
to find a word or communicate a thought, gently try to provide
the word he or she is looking for.
Try to frame questions and
instructions in a positive way.
While some people with AD don't mind bathing, for others it is a
frightening, confusing experience. Advance planning can help make
bath time better for both of you.
the bath or shower for the time of day when the person is most
calm and agreeable. Be consistent. Try to develop a routine.
Respect the fact that bathing is scary and
uncomfortable for some people with AD. Be gentle and respectful.
Be patient and calm.
Tell the person what you are going to do, step by
step, and allow him or her to do as much as possible.
Prepare in advance. Make sure you have everything
you need ready and in the bathroom before beginning. Draw the
bath ahead of time.
Be sensitive to the temperature. Warm up the room
beforehand if necessary and keep extra towels and a robe nearby.
Test the water temperature before beginning the bath or shower.
Minimize safety risks by using a handheld
showerhead, shower bench, grab bars, and nonskid bath mats.
Never leave the person alone in the bath or shower.
Try a sponge bath. Bathing may not be necessary
every day. A sponge bath can be effective between showers or
For someone who has AD, getting dressed presents a series of
challenges: choosing what to wear, getting some clothes off and
other clothes on, and struggling with buttons and zippers.
Minimizing the challenges may make a difference.
Try to have the person get dressed at the same time each
day so he or she will come to expect it as part of the daily
Encourage the person to dress
himself or herself to whatever degree possible. Plan to allow
extra time so there is no pressure or rush.
Allow the person to choose from a
limited selection of outfits. If he or she has a favorite
outfit, consider buying several identical sets.
Arrange the clothes in the order
they are to be put on to help the person move through the
clear, step-by-step instructions if the person needs
clothing that is comfortable, easy to get on and off, and easy
to care for. Elastic waists and Velcro enclosures minimize
struggles with buttons and zippers.
Eating can be a challenge. Some people with AD want to eat all
the time, while others have to be encouraged to maintain a good
Ensure a quiet, calm atmosphere for
eating. Limiting noise and other distractions may help the
person focus on the meal.
a limited number of choices of food and serve small portions.
You may want to offer several small meals throughout the day in
place of three larger ones.
Use straws or cups with lids to
make drinking easier.
Substitute finger foods if the
person struggles with utensils. Using a bowl instead of a plate
also may help.
healthy snacks on hand. To encourage eating, keep the snacks
where they can be seen.
Visit the dentist regularly to keep
mouth and teeth healthy.
What to do all day? Finding activities that the person with AD
can do and is interested in can be a challenge. Building on current
skills generally works better than trying to teach something new.
Don't expect too much. Simple
activities often are best, especially when they use current
Help the person get started on an
activity. Break the activity down into small steps and praise
the person for each step he or she completes.
Watch for signs of agitation or
frustration with an activity. Gently help or distract the person
to something else.
Incorporate activities the person
seems to enjoy into your daily routine and try to do them at a
similar time each day.
Take advantage of adult day
services, which provide various activities for the person with
AD, as well as an opportunity for caregivers to gain temporary
relief from tasks associated with caregiving. Transportation and
meals often are provided.
Incorporating exercise into the daily routine has benefits for
both the person with AD and the caregiver. Not only can it improve
health, but it also can provide a meaningful activity for both of
you to share.
Think about what kind of physical
activities you both enjoy, perhaps walking, swimming, tennis,
dancing, or gardening. Determine the time of day and place where
this type of activity would work best.
Be realistic in your expectations.
Build slowly, perhaps just starting with a short walk around the
yard, for example, before progressing to a walk
around the block.
aware of any discomfort or signs of overexertion. Talk to the
person's doctor if this happens.
Allow as much independence as
possible, even if it means a less-than-perfect garden or a
scoreless tennis match.
what kinds of exercise programs are available in your area.
Senior centers may have group programs for people who enjoy
exercising with others. Local malls often have walking clubs and
provide a place to exercise when the weather is bad.
physical activities. Spend time outside when the weather
permits. Exercise often helps everyone sleep better.
As the disease progresses, many people with AD begin to
experience incontinence, or the inability to control their bladder
and/or bowels. Incontinence can be upsetting to the person and
difficult for the caregiver. Sometimes incontinence is due to
physical illness, so be sure to discuss it with the person's doctor.
Have a routine for taking the
person to the bathroom and stick to it as closely as possible.
For example, take the person to the bathroom every 3 hours or so
during the day. Don't wait for the person to ask.
Watch for signs that the person may
have to go to the bathroom, such as restlessness or pulling at
clothes. Respond quickly.
Be understanding when accidents
occur. Stay calm and reassure the person if he or she is upset.
Try to keep track of when accidents happen to help plan ways to
To help prevent nighttime
accidents, limit certain types of fluids--such as those with
caffeine--in the evening.
If you are going to be out with the
person, plan ahead. Know where restrooms are located, and have
the person wear simple, easy-to-remove clothing. Take an extra
set of clothing along in case of an accident.
For the exhausted caregiver, sleep can't come too soon. For many
people with AD, however, nighttime may be a difficult time. Getting
the person to go to bed and stay there may require some advance
Set a quiet, peaceful tone in the
evening to encourage sleep. Keep the lights dim, eliminate loud
noises, even play soothing music if the person seems to enjoy
Try to keep bedtime at a similar
time each evening. Developing a bedtime routine may help.
Encourage exercise during the day
and limit daytime napping.
access to caffeine late in the day.
Use night lights in the bedroom,
hall, and bathroom if the darkness is frightening or
Delusions and Hallucinations
As the disease progresses, a person with AD may experience
hallucinations and/or delusions. Hallucinations are when the person
sees, hears, smells, tastes, or feels something that is not there.
Delusions are false beliefs that the person cannot be dissuaded of.
Sometimes hallucinations and
delusions are a sign of a physical illness. Keep track of what
the person is experiencing and discuss it with the doctor.
Avoid arguing with the person about
what he or she sees or hears. Try to respond to the feelings he
or she is expressing, and provide reassurance and comfort.
Try to distract the person to
another topic or activity. Sometimes moving to another room or
going outside for a walk may help.
Turn off the television set when
violent or disturbing programs are on. The person with AD may
not be able to distinguish television programming from
Make sure the person is safe and
does not have access to anything he or she could use to harm
Keeping the person safe is one of the most important aspects of
caregiving. Some people with AD have a tendency to wander away from
their home or their caregiver. Knowing what to do to limit wandering
can protect a person from becoming lost.
Make sure that the person carries
some kind of identification or wears a medical bracelet. If he
or she gets lost and is unable to communicate adequately, this
will alert others to his or her identity and medical
a recent photograph or videotape of the person with AD to assist
police if the person becomes lost.
Keep doors locked. Consider a keyed
deadbolt or an additional lock up high or down low on the door.
If the person can open a lock because it is familiar, a new
latch or lock may help.
sure to secure or put away anything that could cause danger,
both inside and outside the house.
Caregivers of people with AD often have to look at their homes
through new eyes to identify and correct safety risks. Creating a
safe environment can prevent many stressful and dangerous
secure locks on all outside windows and doors, especially if the
person is prone to wandering. Remove the locks on bathroom doors
to prevent the person from accidentally locking himself or
Use childproof latches on kitchen
cabinets and any place where cleaning supplies or other
chemicals are kept.
medications and keep them locked up. Also make sure knives,
lighters and matches, and guns are secured and out of
Keep the house free from clutter.
Remove scatter rugs and anything else that might contribute to a
fall. Make sure lighting is good both inside and out.
Consider installing an automatic
shut-off switch on the stove to prevent burns or fire.
Making the decision that a person with AD is no longer safe to
drive is difficult, and it needs to be communicated carefully and
sensitively. Even though the person may be upset by the loss of
independence, safety must be the priority.
Look for clues that safe driving is
no longer possible, including getting lost in familiar places,
driving too fast or too slow, disregarding traffic signs, or
getting angry or confused.
sensitive to the person's feelings about losing the ability to
drive, but be firm in your request that he or she no longer do
so. Be consistent--don't allow the person to drive on "good
days" but forbid it on "bad days."
Ask the doctor to help. The person
may view the doctor as an "authority" and be willing
to stop driving. The doctor also can contact the Department of
Motor Vehicles and request that the person be reevaluated.
necessary, take the car keys. If just having keys is important
to the person, substitute a different set of keys.
If all else fails, disable the car or move it to a
location where the person cannot see it or gain access to
Visiting the Doctor
It is important that the person with AD receive regular medical
care. Advance planning can help the trip to the doctor's office go
Try to schedule the appointment for
the person's best time of day. Also, ask the office staff what
time of day the office is least crowded.
the office staff know in advance that this person is confused.
If there is something they might be able to do to make the visit
go more smoothly, ask.
Don't tell the person about the
appointment until the day of the visit or even shortly before it
is time to go. Be positive and matter-of-fact.
along something for the person to eat and drink and any activity
that he or she may enjoy.
a friend or another family member go with you on the trip, so
that one of you can be with the person while the other speaks
with the doctor.
Coping with Holidays
Holidays are bittersweet for many AD caregivers. The happy
memories of the past contrast with the difficulties of the present
and extra demands on time and energy can seem overwhelming. Finding
a balance between rest and activity can help.
or adapt family traditions that are important to you. Include
the person with AD as much as possible.
Recognize that things will be
different, and have realistic expectations about what you can
friends and family to visit. Limit the number of visitors at one
time, and try to schedule visits during the time of day when the
person is at his or her best.
Avoid crowds, changes in routine
and strange surroundings that may cause confusion or
your best to enjoy yourself. Try to find time for the holiday
things you like to do, even if it means asking a friend or
family member to spend time with the person while you are
Visiting a Person with AD
Visitors are important to people with AD. They may not always
remember who the visitors are, but just the human connection has
value. Here are some ideas to share with someone who is planning to
visit a person with AD.
the visit at the time of the day when the person is at his or
her best. Consider bringing along some kind of activity, such as
something familiar to read or photo albums to look at, but be
prepared to skip it if necessary.
Be calm and quiet. Avoid using a
loud tone of voice or talking to the person as if he or she were
a child. Respect the person's personal space and don't get too
Try to establish eye contact and
call the person by name to get his or her attention. Remind the
person who you are if he or she doesn't seem to recognize
If the person is confused, don't argue. Respond to
the feelings you hear being communicated, and distract the
person to a different topic if necessary.
the person doesn't recognize you, is unkind, or responds
angrily, remember not to take it personally. He or she is
reacting out of confusion.
For many caregivers, there comes a point when they are no longer
able to take care of their loved one at home. Choosing a adult family
home) -- a nursing home or an assisted living facility -- is a big
decision, and it can be hard to know where to start.
It's helpful to gather information
about services and options before the need actually arises. This
gives you time to explore fully all the possibilities before
making a decision.
Determine what facilities are in
your area. Doctors, friends and relatives, hospital social
workers, and religious organizations may be able to help you
identify specific facilities.
Make a list of questions you would
like to ask the staff. Think about what is important to you,
such as activity programs, transportation, or special units for
people with AD.
the places that interest you and make an appointment to visit.
Talk to the administration, nursing staff, and residents
Observe the way the facility runs
and how residents are treated. You may want to drop by again
unannounced to see if your impressions are the same.
Find out what kinds of programs and
services are offered for people with AD and their families. Ask
about staff training in dementia care, and check to see what the
policy is about family participation in planning patient
Check on room availability, cost and method of
payment, and participation in Medicare or Medicaid. You may want
to place your name on a waiting list even if you are not ready
to make an immediate decision about long-term care.
Once you have made a decision, be
sure you understand the terms of the contract and financial
agreement. You may want to have a lawyer review the documents
with you before signing.
is a big change for both the person with AD and the caregiver. A
social worker may be able to help you plan for and adjust to the
move. It is important to have support during this difficult