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Tips for Caregivers of People with Alzheimer's Disease
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.
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 home.
- 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.
How Alzheimer's care givers can help with
Communication
Trying to communicate with a person who has AD can be a challenge. Both
understanding and being understood may be difficult.
- Choose simple words and short sentences and use a gentle, calm tone of
voice.
- Avoid talking to the person with AD like a baby or talking about the
person as if he or she weren't there.
- 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.
How Alzheimer's care givers can help
with Bathing
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.
- Plan 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 baths.
How Alzheimer's care givers can help with dressing
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 routine.
- 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 process.
- Provide clear, step-by-step instructions if the person needs prompting.
- Choose 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.
How Alzheimer's care givers can help with eating
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 diet.
- Ensure a quiet, calm atmosphere for eating. Limiting noise and other
distractions may help the person focus on the meal.
- Provide 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.
- Have 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.
How Alzheimer's care givers can help with activities
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 abilities.
- 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.
How Alzheimer's care givers can help with Exercise
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.
- Be 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.
- See 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.
- Encourage physical activities. Spend time outside when the weather
permits. Exercise often helps everyone sleep better.
How Alzheimer's care givers can help with Incontinence
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 avoid them.
- 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.
How Alzheimer's care givers can help with sleep problems
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 planning.
- 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 it.
- 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.
- Restrict access to caffeine late in the day.
- Use night lights in the bedroom, hall, and bathroom if the darkness is
frightening or disorienting.
How Alzheimer's care givers can help with hallucinations and delusions
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 reality.
- Make sure the person is safe and does not have access to anything he or
she could use to harm anyone.
How Alzheimer's care givers can help with wandering
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
condition.
- Keep 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.
- Be sure to secure or put away anything that could cause danger, both
inside and outside the house.
How Alzheimer's care givers can help with home saftey
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 situations.
- Install 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 herself in.
- Use childproof latches on kitchen cabinets and any place where cleaning
supplies or other chemicals are kept.
- Label medications and keep them locked up. Also make sure knives,
lighters and matches, and guns are secured and out of reach.
- 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.
How Alzheimer's care givers can help with driving
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.
- Be 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.
- If 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 it.
How Alzheimer's care givers can help with doctor visits
It is important that the person with AD receive regular medical
care. Advance planning can help the trip to the doctor's office go more
smoothly.
- 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.
- Let 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.
- Bring along something for the person to eat and drink and any activity
that he or she may enjoy.
- Have 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.
How Alzheimer's care givers can help with 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.
- Keep 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 do.
- Encourage 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 agitation.
- Do 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 out.
How Alzheimer's care givers can help with visitors
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.
- Plan 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 close.
- 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 you.
- 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.
- If 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.
How Alzheimer's care givers can help with choosing a nursing
home
For many caregivers, there comes a point when they are no longer
able to take care of their loved one at home. Choosing a residential care
facility -- 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.
- Contact 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
care.
- 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.
- Moving 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 transition.
Resources for more information.
Several organizations offer information for caregivers about AD.
To learn more about support groups, services, research, and additional
publications, you may wish to contact the following:
Alzheimer's Association
225 North Michigan Avenue
Suite 1700
Chicago, IL 60601-7633
1-800-272-3900
Web address:
http://www.alz.org
This nonprofit association supports families and caregivers of patients with
AD. Almost 300 chapters
nationwide provide referrals to local resources and services, and sponsor
support groups and educational programs. Online and print versions of
publications are also available at the web site.
Alzheimer's Disease Education and Referral (ADEAR) Center
PO Box 8250
Silver Spring, MD 20907-8250
1-800-438-4380
301-495-3334 (fax)
Web address:
http://www.alzheimers.org
This service of the National Institute on Aging is funded by the Federal
Government. It offers information and publications on diagnosis, treatment,
patient care, caregiver needs, long-term care, education and training, and
research related to AD. Staff answer telephone and written requests and make
referrals to local and national resources.
Publications and videos can
be ordered through the ADEAR Center or via the web site.
Children of Aging Parents
P.O. Box 167
Richboro, PA 18954
1-800-227-7294
Web address:
http://www.caps4caregivers.org
This nonprofit group provides information and materials for adult children
caring for their older parents. Caregivers of people with Alzheimer's disease
also may find this information helpful.
Eldercare Locator
1-800-677-1116
Web address:
http://www.eldercare.gov
The Eldercare Locator is a nationwide, directory assistance service helping
older people and their caregivers locate local support and resources for older
Americans. It is funded by the Administration on
Aging (AoA), which also provides a caregiver resource called
Because We Care - A Guide for People Who Care. The
AoA
Alzheimer's Disease Resource Room contains information for families,
caregivers, and professionals about AD, caregiving, working with and providing
services to persons with AD, and where you can turn for support and assistance.
Family Caregiving Alliance
180 Montgomery Street
Suite 1100
San Francisco, CA 94104
1-800-445-8106
Web address:
http://www.caregiver.org
Family Caregiver Alliance is a community-based nonprofit organization
offering support services for those caring for adults with AD, stroke, traumatic
brain injuries and other cognitive disorders. Programs and services include an
Information Clearinghouse for FCA's publications.
The National Institute on Aging Information Center
P.O. Box 8057
Gaithersburg, Maryland 20898-8057
1-800-222-2225
1-800-222-4225 (TTY)
Web address:
http://www.nia.nih.gov
The National Institute on Aging (NIA) offers a variety of information about
health and aging, including the Age Page series and the
NIA Exercise
Kit, which contains an 80-page exercise guide and 48-minute closed-captioned
video. Caregivers can find many Age Pages on the NIA Publications
ordering website at
www.niapublications.org. NIASeniorHealth.gov is a senior-friendly website
from NIA and the National Library of Medicine.
Located at www.NIHSeniorHealth.gov, the
website features popular health topics for older adults.
The Simon Foundation for Continence
P.O. Box 815
Wilmette, IL 60091
1-800-237-4666
Web address:
http://www.simonfoundation.org
The Simon Foundation for Continence helps individuals with incontinence,
their families, and the health professionals who provide their care. The
Foundation provides books, pamphlets, tapes, self-help groups, and other
resources.
Well Spouse Foundation
63 West Main Street, Suite H
Freehold, NJ 07728
1-800-838-0879
Web address:
http://www.wellspouse.org
Well Spouse is a nonprofit membership organization that gives support to
wives, husbands, and partners of the chronically ill and/or disabled. Well
Spouse publishes the bimonthly newsletter, Mainstay.
The National Institute on Aging gratefully
acknowledges the following Alzheimer's Disease Centers for their valuable
contributions of information in preparation of this Caregiver Guide:
- Duke University Joseph and Kathleen Bryan Alzheimer's Disease Research
Center
- The Johns Hopkins University Alzheimer's Disease Center
NIH Publication No. 01-4013
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