Rush Manual 5. Providing Daily Care

/Home/Caregiving and Alzheimer's/Caregiving Booklets and Pamphlets/Rush Manual for Caregivers

KEEPING ACTIVE

Persons with dementia need to be active and have meaningful
things to do. "Activity" refers to the doing or interaction
between the individual and their environment, defined in its
broadest terms to include physical, social, and cultural environ-
ments. Activities are the tasks that give purpose, meaning, and
definition to one's daily life. Working in a kitchen or a yard,
reading a book, listening to music, singing a song, watching tele-
vision, or visiting with a neighbor are activities. Activities also
include things related to taking care of oneself, such as bathing,
grooming, and eating. Most of these activities are tasks that a
person does routinely throughout life and can be done without
much thought. Such activities are integral parts one one's day
and contribute to feelings of control and mastery.

A person with dementia usually has difficulty deciding what
to do each day. The day may appear like a vast space of unstruc-
tured time. This may evoke feelings of worry and fear. The
apathy and tendency to withdraw from others sometimes
displayed by persons with dementia may be related to difficulty
with planning and initiating activities and tasks. The person
with dementia is not being lazy or unproductive, but may need
someone to give structure and direction to their day. Jitka Zgola,
an occupational therapist specializing in Alzheimer's disease
writes:

"We do things to define ourselves as individuals, to exert
control over our environment, and to develop and secure mean-
ingful relationships with others. Alzheimer's disease gradually
erodes a person's ability to engage in many of the activities that
fulfill these basic psychosocial needs. It then becomes the
responsibility of the [caregiver] to offer the [person] alternatives
that enable him or her to continue with meaningful activities."


Activity ideas

There are general types of activities that persons need to be
involved in each day. A good variety of activities can be both
stimulating for the person with dementia and can be a diversion
or help to the caregiver. A balance between household and
leisure activities will include social, physical, cognitive and spiri-
tual activities.

- Household activities

Washing dishes, sorting mail, clipping coupons, sorting
socks, folding laundry, sweeping the floor, polishing shoes, raking
leaves, weeding in the garden, watering plants, rolling dough,
snapping green beans, sorting recycling materials, sorting cards,
are fairly simple work activities that can be done independently
or with some assistance. When the person with dementia
engages in these activities, it is important to dignify the work
and be thankful for their assistance.

- Music activities

Music has universal appeal. Listening to a specific song
may or may not be familiar to the individual, but it may be
enjoyable because of its rhythmic quality and its ability to trigger
emotions and memories. Musical activities might include play-
ing records or tapes, singing old familiar songs, dancing,
reminiscing about the music and past events, or playing musical
games like "Name that Tune." Listening to a favorite musical or
opera and discussing the story and the composers can be enjoyed
alone or together. Consider attending a concert or an afternoon
matinee of a musical production. Such activities might also be
useful for a visitor unsure about what to do or talk about during a
visit.

- Pets

There is something magical about the presence of a dog, a
cat, or a bird which seems to bring people to life. Pets can offer
opportunities for a person with dementia to still enjoy some
responsibilities. Being with an animal also increases
socialization, decreases anxiety, and provides a nice diversion
from the frustration of memory loss. Activities that incorporate
the use of such animals can be basic pet care like grooming, feed-
ing, and exercise.

- Gardening

Staying connected to nature is an important way to be
productive and care for other living things. Working with plants
indoors or in an outdoor garden can spur memories of past
summer days and enjoyable times spent outside. Planting herbs,
flowers, and vegetables can help support remaining talents and
provide an ongoing project. Watering the plants each day,
discussing their progress, and reminiscing about past gardening
experiences make the days fuller and more meaningful.

- Children

Staying in touch with children of all ages keeps a bridge
between the generations and can often stimulate conversation
and memories. Both children and older adults increase their
self-esteem, develop mutual respect, and form deeper bonds if
they can enjoy their time together. Consider playing simple
board games or reading stories or books together. Consider visit-
ing relatives with small children and having young mothers visit
with their babies. Walks in the park and school yards provide
exercise and trigger conversations about children. Consider
attending school or church programs involving young people.

- Outings

Early in the disease, outings that were fun in the past should
be continued. Consider such outings even as the disease
progresses and modify them as needed. Trips can include walks
at the zoo, botanical gardens, forest preserves or shopping malls.
A swimming pool during a slow time offers great sensory stimula-
tion. You may want to consider using a business card for such
public outings that states, "My companion has Alzheimer's
disease. Thanks for your consideration." This information can
be shared with store clerks and restaurant staff and can make
outings more comfortable for all involved. Outings should be
carefully planned based on length of the activity, time of day,
and destination that allows for maximum success.


Physical fitness

Staying physically active is a key component of well-being. Not
only does exercise provide physical benefits but it can also
improve one's mood. A daily walking routine is one of the
simplest and most beneficial physical activities. If the person
with dementia walks alone, then an ongoing assessment of safety
is crucial. It is a challenge to allow the person with dementia to
be independent while at the same time planning for safety.
Consider making "Sit and Be Fit" a regular part of a daily
routine. This is a TV program that emphasizes range of motion
and low-impact aerobic exercise. There are also exercise videos
specifically tailored to the exercise requirements of older adults.
As in any exercise program, a standard routine should be
followed to ensure proper warm-up and cool-down. Exercise
should always be followed by a drink of water or juice to ensure
proper hydration.


Adapting activities

All activities can be designed to meet the abilities and needs of
the person with dementia. Whether the person is participating
fully or is a passive observer, each activity can be adjusted to
meet one's specific needs. The idea of "grading" an activity to
suit one's abilities at different stages of dementia is suggested by
Zgola in the book, Key Elements of Dementia Care. An example
of modifying or "grading" an activity such as baking cookies can
be seen at several levels:
1 Independent-organizer-doer (e.g., decides on ingredients,
shops, bakes).
2. Independent-doer (e.g., makes cookies, once the recipe and
ingredients are prepared).
3. Doer-of-a-specific-task (e.g., measures, mixes and pours,
depending on ability).
4. Doer-of-a-modified-task (e.g., does a specific step with help
or supervision).
5. Observer-monitor (e.g., listens for the oven timer to go off).
6. Observer-advisor (e.g., tells of own experience).
7. Observer-critic (e.g., tastes cookies).
8. Observer (e.g., watches or listens).

Regardless of the activities that are chosen to fill one's day,
a caregiver must take the lead and choose things that are most
enjoyable for all concerned. Whether an activity can be done
alone by someone with dementia or must be carried out with
others, the main point is to maximize opportunities for success
and enjoyment.


ENSURING PERSONAL HYGIENE

The person with dementia may eventually need assistance with
bathing, grooming and dressing. Since these are usually private
activities, the person may refuse help. With a calm, matter-of-
fact approach you can usually get cooperation. Bathing the
person can be one of the caregiver's most difficult challenges.
Many people with dementia develop fear about bathing. To
reduce fear about a bath or a shower, consider these tips:
* Start by organizing all the items you need for the bath; use
moisturizing soap and avoid bubble bath or bath oils because
they can make the tub slippery and may cause urinary tract
infections.
* Keep the bathroom warm and well lighted.
* Avoid discussion about the need for a bath or shower. Be
matter-of-fact: "It is time for a bath now."
* If the person is embarrassed about being bathed, try covering
them with clothing or a towel and then using a sponge or
washcloth to bathe underneath the covering.
* If the person is frightened, distract her with conversation.
* Bathing is not necessary every day; two to three times a week
may be sufficient.
* Washing the face, hands and genital area may be all that is
necessary.
* It may be easier to wash a person's hair in the sink, especially
if they usually bathe in the tub. You can buy a hose attach-
ment for the sink.
* Try to adhere to the person's lifelong bathing habits. For
example, if the person always took a bath before bed or a
shower just after breakfast, try to follow this routine.
* Despite your best efforts, someone else, such as a friend or
relative, may be more effective in helping with the bathing.
A paid professional person from a home care agency may
work well, too.

After a bath, pat the person's skin with a towel and dry off
completely. To prevent rashes or infections, make sure the person
is dry between folds of skin. Apply a thin layer of cornstarch
under folds of skin. Cornstarch is more absorbent than baby
powder. If incontinence is an issue, apply a protective ointment
to protect the skin.

___
Follow these safety
measures:

Never leave a confused
or frail person alone in
the tub.

Always check the water
temperature before the
person gets in the tub.

Use plastic containers
rather than glass.

Use a rubber bath mat
and install safety bars
in the tub.

A sturdy "shower chair"
in the tub or shower will
support a person who is
unsteady. It could prevent
falls. Special chairs are
available from drug stores
and medical supply stores.
___


Oral hygiene

Good oral hygiene is essential for the person with dementia.
When regularly practiced, it prevents dental problems and
promotes good nutrition. The following tips may be helpful:
* You may need to demonstrate the brushing motion for clean-
ing teeth or dentures, step by step. You may want to brush
your teeth at the same time the person is brushing theirs.
* Supervise denture cleaning and rinse their mouth after each
meal if dentures are worn.
* If you must brush the person's teeth, try a long-handled or
angled toothbrush, or one that is electric.


Dressing

A person with dementia often takes more time to dress than in
the past. It can be difficult for the person to organize things and
make decisions. The person may inappropriately layer clothes or
select the wrong clothing for the season. They may wear clashing
colors or forget to put on some item of clothing. Allow the
person to dress on their own for as long as possible:
* Lay clothes out in the order a person should put them on
such as underclothes first and then a skirt and sweater.
* If necessary, hand the person each item of clothing or give
step-by-step instructions as needed.
* Eliminate a large selection of clothes. Keep only seasonal
clothes in the closet or dresser and reduce the number of
clothing choices.
* You may want to keep the closet locked and put out one
outfit at a time.
* A person may try to wear the same clothing every day. If so,
buy three or four sets of the same clothes and rotate them.
* Clothing should be loose-fitting and comfortable. Women
should avoid girdles, control-top pantyhose, knee-high
nylons, garters, high heels, constricting socks and binding
bras. Short cotton socks and loose cotton underwear are best.
* If shoelaces, zippers, buttons and buckles become difficult to
manage, try Velcro tape or large zipper pulls for clothing;
slip-on shoes that won't slide off or sports shoes; sneakers
with Velcro closures and pants with elastic waistbands.



Personal grooming

Grooming is another important daily activity that should be
encouraged for as long as possible. Encourage a woman to wear
makeup if she has always worn it. Stick to powder and lipstick
only and avoid eye makeup. Encourage a man to shave and help
him as needed. Use an electric razor to ensure safety. It's a good
idea to continue taking the person to the barber or beauty shop
or it may be possible to arrange for the barber or beautician to
come to your home. Always keep the person's nails clean and
trimmed.



PROMOTING MOBILITY AND EXERCISE

Problems with mobility may occur in the middle to late stages of
Alzheimer's disease. People with dementia who are able to walk
and move independently tend to maintain a positive outlook
and a good quality of life. As control of their life decreases
because of the disease, their ability to walk encourages self-confi-
dence. The body needs to move to maintain use of muscles and
joints and promote good cardiovascular functioning, weight
control, healthy sleep habits and healthy skin. Getting outside
every day for a walk should be part of the daily routine. An exer-
cise routine is also encouraged.

The person with Alzheimer's disease may have some
problems that limit their mobility and ability to exercise. These
include poor endurance, poor coordination, sore feet, an acute
illness and confinement to bed. You can encourage mobility by
suggesting simple activities around the home such as sweeping
and dusting. Try to make the exercise fun by counting
repetitions. Have the person wear a radio with earphones to
prevent them from being distracted by noises in the room.
Suggest the person use a stationary bike to exercise. Balls or
balloons can be used for stretching. Be sure the person is safe
when they exercise.

___
Have the person hold an
object, such as a
washcloth, while being
moved. They will be less
likely to grab onto you or
the furniture.

If the person is weak on
one side, lean toward their
stronger side so they can
help you with the reposi-
tioning.
___


Dealing with immobility

If the person cannot move on their own, you can move their
body joints with "range of motion" exercises. Move each joint
six to eight times. A physical therapist, nurse or occupational
therapist should demonstrate this method for you. If these exer-
cises are not done correctly, joints can be damaged. Helping the
immobile person to move is very important because it slows the
breakdown of skin and contracture of arms, hands and legs.

Here, too, are suggestions to help the bedridden person be more
comfortable:
* To reduce pressure sores, use specialized seat cushions and
bed mattresses.
* Make sure to reposition the person at least every two hours.
* When the person is seated, give them a lap-board to rest the
arms and help support the upper body.
* A wedge-shaped cushion for the chair that is high in the
front and slants to the back of the chair will help the person
sit up straight and prevent them from sliding out of the chair.


When the problem is too much mobility

Sometimes a person with dementia walks or paces for hours.
Pacing may actually help to ease tension. However, if the person
is too active, they may be losing weight and will need to be
closely monitored. Make sure the person has sturdy, comfortable
walking shoes. Frequent snacks or meals served "on the move"
may reduce the possibility of excessive weight loss.

Although it should only be implemented as a last resort, a
restraining device may have to be used if the person is unsafe to
oneself or others. A restraint can be a vest-like garment that is
tied to a chair. Such equipment can be purchased at medical
supply stores. Ask a health care professional to demonstrate how
to use the restraints to ensure they are used safely and correctly;
misuse may result in serious injury.

___
When lifting the person,
slide them to the edge of
the chair or the bed.
Use a transfer belt that
is wrapped around their
waist. Face the person,
put your hands under the
belt on either side of the
waist, bend your knees
and then pull up. Use
your thigh muscles to
raise the person from a
seated into a standing
position.
___


Body mechanics

You must always be aware of your own strength when assisting
the person. An injured back, for example, will greatly limit your
ability to provide care. To avoid injury when lifting someone, try
to use your body wisely. Practice "body mechanics," the princi-
ples of which are described below:
* When lifting, bend at the knees and then straighten your
thigh muscles; keep your back straight and do not bend at
the waist.
* Hold the person to be lifted as close to you as possible to
avoid reaching away from your body.
* Keep a wide base of support by placing one foot in front of
the other or spacing your feet comfortably apart.
* Use little steps to move the person from one seat to another;
do not twist your body.

A physical therapist, nurse or occupational therapist can
demonstrate these techniques for you. Ask your physician for a
referral to one of these professionals.

Adapted with permission from Hellen, C. Alzheimer's Disease:
Activity - Focused Care. Stoneham, MA: Andover Medical
Publishers, Inc., 1998.



DEALING WITH INCONTINENCE

Loss of bowel and bladder control or "incontinence" may occur
as Alzheimer's disease progresses into the late stage. Bowel
incontinence is a separate problem from bladder incontinence,
and a less common one. One can occur without the other.
Whenever incontinence occurs, the person may either be
unaware of the problem or, at the other extreme, very upset by it.

___
A "commode chair" might
be useful to the person,
particularly at night. The
chair is a portable toilet
equipped with a
removable bedpan.

If the incontinent person is
male, consider having him
sit down to urinate rather
than stand. This may be
effective if he is agitated
or unsteady on his feet.
___


Bladder incontinence

Bladder or urine incontinence may occur in a number of ways:
leaking or dribbling of urine, emptying of the bladder at once,
soiled undergarments or bed linens. In any case, if urine inconti-
nence is a problem, a physician should be consulted. There may
be a treatable cause of the incontinence such as a urinary tract
infection, enlarged prostate gland, dehydration, uncontrolled
diabetes, and use of water pills or excessive amounts of caffeine.
The physician will want to know several things about the incon-
tinence, such as:
* Does the person leak urine when they laugh, cough or lift
something?
* Does the person urinate frequently and can they get to the
bathroom on time?
* Are they urinating in improper places?
* Is the person taking diuretics, antihistamines, antidepressants
or sedatives?
* Is this a regular or occasional problem?

First of all, you may need to remind the person to go to the
toilet every two to three hours in an effort to minimize or
prevent incontinence. It is important to keep the person's cloth-
ing comfortable, and easy to remove. Jogging suits, for example,
are simple to put on and take off. Keeping a diary of the person's
toilet and fluid intake habits may help manage the incontinence.
Does the person urinate first thing in the morning or right after
drinking caffeinated fluids? Use this information to develop a
schedule.

Make sure the person drinks at least six 8-ounce glasses of
fluid each day. Don't greatly restrict fluids unless a fluid-
restricted diet has been recommended. If incontinence occurs at
night, you may want to limit fluids after 6 p.m. or 7 p.m. Before
bedtime, fresh fruit rather than fluids can quench the thirst.

If the person is confused, using the bathroom will be a chal-
lenge. There are ways you can help minimize the confusion, such
as marking the bathroom door with a colorful sign that reads,
"TOILET." The bathroom should be safe and comfortable; the
person may get agitated if the lighting is too bright, or the
temperature is too warm or too cold. The toilet seat should be
stable and at a good height. Raised toilet seats are available at
medical supply stores. Public restrooms may present special prob-
lems for the person with dementia. If possible, try to assist the
person when using a public bathroom.

Many products for incontinence are available in drug stores
and medical supply stores. These products include adult dispos-
able diapers, bed protectors and waterproof mattress covers.

___
The person may be
confused by the roll of
toilet paper. You may
need to give them the
proper amount of paper
and help them use it
correctly.

Care of the incontinent
person's skin is crucial.
After each episode of
incontinence, wash the
person's skin with soap
and water, dry with a towel
and swab with lotions or
ointments. This will
prevent breakdown of
the skin.
___



ADDRESSING NUTRITIONAL NEEDS

In the early stage of Alzheimer's disease, eating habits usually do
not change unless the person lives alone. In this case, there is a
chance that meals are skipped or forgotten. There is also the risk
of burning foods left cooking on the stove and starting a house
fire. These are signs that the person probably should not be
living alone any longer. In the meantime, foods may have to be
purchased that are easy to prepare. Reminding the person by
phone to eat may be sufficient. On the other hand, someone may
have to prepare the meals. You may be able to arrange home-
delivered meals through a local social service agency or catering
service.

It is not unusual for a person with Alzheimer's disease to
have a change in eating patterns in the middle and late stages.
The person may no longer be aware of a mealtime schedule.
Food may be either of increased interest, or of little or no inter-
est. The person may forget how to cook and eat only a limited
variety of foods. Whatever the case may be, a person with
Alzheimer's disease may not be getting proper nutrition. Here are
some suggestions for improving eating habits.

___
A person with Alzheimer's
disease may have rigid
likes and dislikes, often
preferring familiar foods
cooked in familiar ways.
New foods may be
confusing.
___



Mealtime at home

* Provide a quiet environment and regular routine to prevent
confusion. Avoid over-stimulation with television, noise and
too many people. You may want to play soft, relaxing music
during mealtime.
* Try offering just one food at a time instead of filling the plate
and table with too many things, which may be distracting.
* If the person is on a sugar-restricted (diabetic) or salt-
restricted diet, try to keep certain foods out of reach such as
ketchup, vinegar, oil, salt and pepper. A locksmith can put a
lock on the refrigerator door if necessary. Putting masking
tape near the top and/or bottom of the door may be enough
of a hindrance. Childproof locks can secure cabinets.
* If a person has dentures, make sure they are tight-fitting.
Loose dentures may cause choking or pain, making it difficult
to eat. It may be best to leave loose dentures out until the
person can be refitted for new dentures.
* A person may eat with their fingers. Offer finger food such as
cheese, small sandwiches, kabobs, fried chicken, fresh fruits
or vegetables. Sandwiches made with pita bread are easy to
handle.
* Have the person wear a bib to prevent soiling their clothing.
You may want to use a plastic or cloth cape that can be
purchased at a wholesale outlet for beauty supplies.

___
A person who has forgot-
ten what they have just
eaten may ask for more
food right after a meal.
When this happens, offer
nutritious snacks. If
weight gain is a problem,
try celery, carrots, fresh
fruit or other low-calorie
snacks.
___


Utensils

* Make sure the dish and placemat are different colors so they
are more visible. To keep dishes from sliding, try putting a
wet washcloth or suction cups underneath the dishes.
Suction cups are available at medical supply houses. You may
also want to try skid-resistant placemats.
* A bowl is usually easier to manage than a plate. However, a
"plate guard" can keep food from being pushed off a plate.
You can also use a "scoop dish" that can be purchased at
medical supply stores.
* Travel mugs or spill-proof cups are useful for drinking soups
and beverages.
* To help the person "catch on" to the motion of eating, place
the fork or spoon in their hand, and help them guide the
utensil to the mouth. Visual and verbal cues are often help-
ful, such as saying, "Put the spoon in your mouth" and then
demonstrating this action.
* If hand coordination is a problem, try using utensils with
large handles. You can purchase these or use foam rubber to
build up the handles of your spoons, forks and knives.


Dining at a restaurant

* To avoid anxiety while waiting to be served, choose quiet,
well-lighted restaurants where service is fast but friendly.
* Consider carrying printed cards to hand waiters that read:
"My companion has Alzheimer's disease and cannot always
understand you. Your understanding and patience will be
appreciated."


Weight loss

As Alzheimer's disease progresses, weight loss is sometimes a
problem. The person with the disease may have a loss of appetite
or difficulty chewing or swallowing. Most often, increased pacing
and activity without appropriate food intake causes weight loss.
Following are ways you can help increase the person's appetite
and the amount of food they eat:* Encourage the person to eat high-calorie, nutritious foods.
Offer high-calorie snacks such as protein milk shakes. You
can purchase high-protein drinks and powders at any drug-
store. Put pureed food in instant breakfast or high protein
drinks. Let the person drink the food instead.
* Offer a multivitamin once a day.
* Double portions of breakfast food as the person will often eat
breakfast, since it is the first meal of the day.
* Don't skimp on fats. Use extra cooking oil, margarine, butter
and mayonnaise in cooking and preparing food.
* Consult your physician if the person has significant weight
loss, such as 10 pounds in a month.


Problems with swallowing

As Alzheimer's disease progresses to the late stage, the person
may no longer have the coordination to chew and swallow
correctly, which can lead to poor nutrition and weight loss. If
there is choking with each bite of food, there is a risk that the
food could go into the lungs and cause pneumonia. These sugges-
tions may ease problems with swallowing:
* Make sure that food is cut up in small pieces and is soft
enough to eat.
* Ground or pureed foods may ensure safe swallowing. You can
grind or puree most foods in a blender or a baby food grinder.
* Offer other soft foods such as ice cream, milk shakes, yogurt,
cream soups, applesauce, Jello or custard.
* Thin liquids are most difficult to swallow. Remember these
tips:
Do not have the person use a straw. Instead, have them drink
small sips from a cup.
Milk may not be a good choice; it tends to get caught in the
throat.
* Cold drinks are easier to swallow than hot drinks.
* A product called "Thick-It" is available in most drugstores. It
can be added to liquids to thicken their consistency.
* Don't hurry the person. Each mouthful should be chewed
and swallowed before the person takes another bite.
* Don't feed a person who is drowsy or lying down. The person
should be in an upright, sitting position during the meal, and
for at least 20 minutes after the meal.
* When swallowing, have the person keep their neck forward
and chin down.
* A book called The Non-Chew Cookbookis available from
Wilson Publishing Co., P.O. Box 2190, Glenwood Springs,
Colo., 81602; order by calling (303) 945-5600.

Recommendations may vary for each person. Try not to lose
hope. Some people may go through phases of having a poor
appetite and then resume better eating habits. Try to make meal-
time a social, enjoyable activity.