Rush Manual 2. Communication

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BRIDGING THE COMMUNICATION GAP

Dementia affects communication in many complex ways.
Understanding these changes will help keep alive your relation-
ship with the person with dementia. Learning new ways to
communicate should also make your role more meaningful and
less frustrating. You may find that the person's capacity to
communicate fluctuates from day to day or with different people.
The person's ability to communicate is affected by the following:
* Difficulty finding the right word when speaking and difficulty
understanding the meaning of written and spoken words.
* Having a limited attention span, which makes it difficult to
follow lengthy conversations or multiple step instructions.
* Losing train of thought when listening or talking.
* Difficulty remembering the steps in common activities, such
as cooking a meal, paying bills or doing laundry.
* Difficulty filtering out background distractions that seem to
compete for attention (radio, television, telephone calls, the
conversations of others in the room).
* Getting frustrated if communication isn't working.
* Being hypersensitive to nonverbal aspects of communication
such as gestures, touch, tone and volume of voice.
* Reverting back to a native language if English is a second
language.


Making communication easier

No suggestions for improving communication work all the time
with every person. Experiment with different methods of
communication before settling on those that work best. Your
methods will change as the disease progresses over time. Don't
modify your way of communicating with the person unless you
find that they can no longer understand you.

It's easy to slip into the habit of only communicating about
tasks and the issues of day-to-day care. People with dementia,
like all of us, have basic human needs: to feel safe, cared for and
valued. Encourage a dialogue as long as possible. This helps the
person with dementia maintain self-esteem long into the illness.
Keep these suggestions in mind:
* Establish eye contact to get the person's attention first,
before proceeding with what you have to say.
* Offer simple, step-by-step instructions.
* Ask questions that require a yes/no answer.
* Repeat instructions if necessary and allow more time for a
response.
* If words alone don't convey what you want, try a different
approach: show the person and use touch to gently guide
them.
* Try using different words to convey what you want. Perhaps
the appropriate word in the person's native language would
work.
* If you find yourself becoming too frustrated, drop the effort as
calmly as you can and return to it when you're in a better
frame of mind.
* If verbal communication fails, try distracting the person.
Instead, offer a pleasant activity like a snack or a ride around
the neighborhood.
* Ignore angry outbursts if you can't think of a positive
response.
* Be aware of your whole approach: tone and volume of voice,
facial expression and body posture.
* Try not to correct or dispute "errors" in memory. Avoid
saying "Don't you remember?" or "I told you..."
* Begin your conversation socially. Winning the person's trust
first can often make a task much simpler.
* Your manner should be warm, affectionate and matter-of-
fact.
* Allow sufficient time for a familiar activity and try not to
rush it.
* Avoid criticizing mistakes. Instead say, "Let's try this way."
* Support each effort or attempt, even if the results aren't
completely satisfactory. Say, "Thanks for helping."
* Be aware of how the person responds to you. These clues may
give you important feedback that will help you detect a prob-
lem before it develops and allow you to adapt your
communication.
* Be open to the person's comments and concerns even if these
are difficult to hear.
* Sometimes "problematic behaviors" are a way of keeping
control of daily life or expressing frustration. Let the person
make some decisions and stay involved.

___
Keep communication a
dialogue for as long as
possible. The effort put
into this should help the
person with dementia
retain self-esteem long
into the illness.
___


The book, Understanding Difficult Behaviors, gives good
advice about how to communicate with persons with dementia.
The authors break their chapter on communication into seven
parts: focusing on tone, topics of discussion, complexity of
conversation and tasks. Below is their list of "things to do" with
persons with dementia:
* Don't argue with the person.
* Don't order the person around.
* Don't tell the person what he or she can't do. State
directions positively instead of negatively.
* Don't be condescending.
* Don't ask a lot of direct questions that rely on a good
memory.
* Don't talk about the person in front of them.

A man with Alzheimer's disease, quoted in the book The
Loss of Self, seems to express the feelings of many people with
dementia:

"No theory of medicine can explain what is happening to me. Every
few months I sense that another piece of me is missing. My life . . .
my self . . . are falling apart. I can only think half thoughts now.
Someday I may wake up and not think at all . . . not know who I am.
Most people expect to die someday, but whoever expected to lose their
self first? I am hungry for the life that is being taken away from me. I
am a human being. I still exist. I have a family. I hunger for friend-
ship, happiness and the touch of a loved hand. What I ask for is that
what is left of my life shall have some meaning. Give me something to
die for! Help me to be strong and free until my self no longer exists."


HELPING THE PERSON WHO IS AWARE OF MEMORY LOSS

It was once commonly thought that people with Alzheimer's
disease were unaware of their memory loss. We now know that
some people with dementia show a great awareness of their
disease, while others are completely unaware. There is little
research to help us understand which individuals are aware of
their symptoms and how we can help them cope with this aware-
ness.

Some people may deny anything is wrong with their
memory. Such denial may be their way of covering up or
compensating for their cognitive deficits. On the other hand,
some people simply forget that their memory is impaired. These
people do not remember that they do not remember! Such a
notion may be hard to grasp for those of us who take memory for
granted.

Our own reluctance to approach people who have dementia
and inquire about their feelings may be a roadblock to their
acceptance of memory loss. If the person needs to talk about the
changes they are noticing, take time to listen. Be as honest and
sensitive as you can. Following are other ways you can help:
* Many people with dementia want to share what is happening
to them, particularly when they notice problems doing once-
familiar things, such as balancing the checkbook or preparing
a meal. Take time to listen.
* Because of difficulties with word-finding, the person may
need your patience as they try to put feelings into words.
Help them find words, but don't force a conversation.
* Remember that as the person loses verbal language skills,
they will rely on certain behaviors to communicate thoughts
and feelings. It may be helpful to say out loud what the
person may be experiencing. Ask "Are you frustrated right
now?"
* Find out about support groups in your area for people
diagnosed with Alzheimer's disease. The Alzheimer's
Association has developed such specialized groups through
its local chapters.
* Ask your local Alzheimer's Association chapter or a health
care professional about books and articles written by people
with dementia. Many videotapes also describe Alzheimer's
disease from the perspective of someone with the disease.
(See Selected Resources at the end of this Manual for
selected books and videos)
* Your efforts to acknowledge and support the emotional needs
of the person with dementia can go a long way towards main-
taining their quality of life.


___
Our own reluctance to
approach people who
have dementia and inquire
about their feelings may
be a roadblock to their
acceptance of
memory loss.
___



CHANGES IN MARITAL INTIMACY

"Psychological intimacy is the original glue of important relation-
ships. It is an intangible, subtle, powerful motivator of sexual
expression. When this form of intimacy is maintained, a long-term
quieting of the inner self occurs. When it disappears, a multitude
of sexual and nonsexual complaints may be created. Thus, the
significance of psychological intimacy may be nothing less than an
avenue to an emotionally rich life."
Stephen B. Levine, M.D.

___
Nearly every aspect of a relationship is affected by the diminished abilities of the impaired partner and the increased responsibilities of the well spouse.
___


Intimacy rests upon many interconnected abilities that are
affected by dementia. These include the capacity to know what
one thinks and feels and to share those emotions and ideas with
another person, and the ability to understand verbal and non-
verbal communication.

When a married person is affected by Alzheimer's disease,
the couple faces enormous challenges. The diminished abilities
of the partner with the disease and the increased responsibilities
of the well spouse affect every aspect of the relationship. The
expression of intimacy, particularly sexuality, is one of the main
aspects of marriage that the disease often changes.

Coping with disease-related impairments in memory and
behavior may be stressful for the person with dementia. Feelings
such as fear, anxiety, depression, anger and low self-esteem are
fairly common. They may cause the person to act dependent and
cling to their spouse. Such reactions disrupt the marital relation-
ship.

The well spouse may also feel distressed by the emotional
and physical demands of caring for the one with dementia. As
the need for care increases, there is often a blurring of roles
between caregiver and intimate partner. The well spouse may
feel alienated by the mate's chronic forgetfulness, repetitious
questions and annoying behaviors. The marital commitment is
bound to be tested.


Sexuality

A number of chronic diseases and certain medications have been
identified as causes of sexual dysfunction. However, little is
known about the impact of dementia on sexuality. Data from a
few studies of people with Alzheimer's disease indicates that
sexual dysfunction may be commonplace. In some cases, persons
with dementia may be hypersexual: wanting sex often or more
than normal. In other cases, persons with dementia may lose
their desire for sexual activity. Also, spouses of persons with
Alzheimer's disease may lose their desire to have sex.

Reasons for the loss of sexual functioning are not yet fully
understood but a number of factors appear involved. For the
impaired person, medications as well as structural changes in the
brain and nervous system may account for sexual dysfunction.
Also, impotence and decreased sexual desire can be rooted in
emotional problems. The well spouse's desire for sex may dimin-
ish as the person with dementia begins to seem like a stranger.
The spouse may avoid sexual relations when his partner forgets
how to make love or immediately forgets when the lovemaking is
over. Such incidents may cause the spouse to feel rejected or
angry. On the other hand, the well spouse may feel ambivalent
about engaging in sex for fear of "taking advantage" of his willing
partner.

People with dementia occasionally are overly interested in
sex. This hypersexuality may include frequent masturbation and
attempts to seduce others. Some men who are impotent may
crave sexual activity, resulting in frustration for themselves and
their wives. Such behaviors are symptoms of the disease and
seem related to brain damage, rather than maliciousness.
Furthermore, such behaviors may signal the need for attention,
reassurance and closeness instead of the need for sexual gratifica-
tion. Touching, hugging and other forms of affection may help
meet these other emotional needs. Medication is sometimes
needed to curb this behavior.

When one or both partners in a marriage face any of these
obstacles, mutually satisfying sexual activity may decrease as a
priority in the relationship or may no longer be possible to
achieve as a couple. However, most couples eventually learn to
make the necessary accommodations.

Since sex is a private matter, there is usually a reluctance to
discuss it with others. It may be helpful to seek the advice of a
professional when problems arise. The person's physician should
always be notified for possible medical intervention in cases of
persistent sexual aggressiveness. The well spouse, in particular,
may need accurate information, support and counseling to cope
with the changes in the sexual aspect of marriage. Spouses of
people with dementia have learned to adapt in the following
ways:
* Exploring new sources of adult companionship or other plea-
surable activities.
* Trying nonsexual forms of physical contact with their spouse
such as massage, hugging, holding hands and dancing.
* Finding alternatives to sexual intercourse.
* Reflecting on the positive aspects of the past and present
relationship.
* Enlisting the support of others to listen to feelings such as
love and anger, compassion and guilt.

As your spouse's dementia has progressed, you may have
already made many changes in your life. Coming to terms with
the challenges to intimacy that the disease presents may be one
of the toughest tests. Most spouses eventually meet this
challenge. A special grace marks those who have learned to live
with the disease and continue to find meaning in the marriage.
The heartbreak of dementia may be offset by the fulfillment
often experienced in striving "to love for better or worse, in sick-
ness and in health."

Too often the changes in marital intimacy are not
addressed, although they affect every couple coping with demen-
tia to some degree. Discussion of these emotional issues with a
confidante or within a support group is encouraged. Some books,
articles and videotapes are available to help better understand
these changes in marital intimacy. (See Selected Resources)