Print
Friendly Version
Caregiving Challenges
Some of the specific things that are challenging for patients with
AD usually stem from the memory problems that are so predominant
in this disease. The lack of memory for events or people can make
the individual extremely anxious about daily life. This can be
exhibited with asking questions and repeating information, preparing
for appointments/day care well ahead of time, and use of notes
and reminders endlessly. Apathy or a lack of initiative can be
due to tasks that used to seem routine now being overwhelming.
For example, the person who always enjoyed puzzles but no longer
does them because they are too overwhelming and require skills
he/she no longer possesses. Finally, agitation can occur often
as people become less able to interpret the environment and control
or express their feelings. This can be seen in people with dementia
who may strike out when people are caring for them. These behaviors
are very difficult for caregivers who are trying to provide care
and understand the changes in their loved one.
Strategies for Coping
The major strategy for coping is to keep
the goal in mind. Often, caregivers trying to make everything
all right, will end up exhausted and frustrated. The truth
is they can’t make everything all right and an adjustment
of goals to be realistic and attainable may be helpful. Perhaps
the goal is to be sure the patient is clean, comfortable and
well fed and realizing that success might be 80%. Being comfortable
with a less than perfectly groomed spouse or perfectly organized
home is bound to be a difficult task but accepting this will
allow you to perhaps enjoy time you might otherwise have spent
fretting about hygiene issues.
Anticipate misinterpretation by
the individual with dementia. They are often no longer able to
accurately interpret verbal or non-verbal cues which can result
in anxiety and frustration in both the individual and the caregiver.
Try to be clear and concise in your communications – repeating
things as needed using the same words or message. Reduce extraneous
noise and distractions when trying to communicate. Do not use confusing
pronouns (he,she,it) but rather names and specific titles. Try
to imagine what someone MIGHT think you are trying to do or say
if they were unable to think clearly.
Remember that all behavior has
a purpose. Many experts believe that some of the behavioral
symptoms that people with dementia exhibit such as shouting out
or striking out are meaningful. Although the person does not
generally intend to disrupt things or to hurt someone, they do
intend to be noticed and perhaps communicate a need that is not
being met. In addition, it is important to remember that while
these behaviors are meaningful, they are not intentional and
the individual is not doing this “on purpose” but
more likely in an attempt to convey a message that they can longer
explain in words. Slowing down, trying to see the world thru
their eyes and trying to respond to the “feeling” behind
the behavior rather than the behavior itself, may allow you to
prevent an emotional crisis.
Many people with Alzheimer’s disease remain physically
fit and retain their ability to be comfortable and involved in
social situations quite late in the disease. Therefore, enjoy
the good times and continue to socialize, travel, be physically
active and participate in activities that are enjoyable to both
the person with Alzheimer’s and the caregiver. Often, familiar
activities that may be well memorized will continue to be enjoyable
for the person with Alzheimer’s disease and should be encouraged.
However, trying to learn new tasks or starting new hobbies may
be frustrating or overwhelming.
Since memories from the distant past are not usually affected, reminisce
about the past and encourage discussions about people
and places that are familiar and evoke pleasant feelings for
both of you. Watching family videos, looking at photographs or
reviewing travels from the past can allow the person with Alzhiemer’s
disease and the caregiver to continue to share experiences and
feelings. Allow the person to share the history they remember
with family members, grandchildren and friends. It can be fun
for all involved and so satisfying for the person with dementia
to continue to feel connected and to contribute.
Be flexible. The disease
is progressive. The symptoms and needs will change over time. If
strategies such as notes or reminders, are no longer working, don’t
use them! A successful intervention at one stage, can be a frustration
and disaster at another. Seek help, ask for advice, learn from
others who have had similar experiences. More challenging behavioral
symptoms such as resisting care or being aggressive can be particularly
difficult and often require a very individualized approach. Talk
to your doctor about approaches, both pharmacological and non-pharmacological.
Some strategies for specific behaviors are available at the links
listed below:
 Safety One
of the priorities for caregivers is the safety of their loved one
with dementia. As dementia progresses, the memory and judgment
of the individual become impaired and he/she is often no longer
able to anticipate or avoid dangerous situations. This can be an
overwhelming responsibility for a caregiver and require some creative
strategies for coping. The recommendations below are some areas
to consider planning for in terms of safety.
Supervision
In the early stages, concerns about supervision may be minimal
as the person with dementia is still able to make appropriate judgments
about safety. However, the need for supervision usually increases
as the person with dementia becomes more forgetful and their judgment
becomes poorer. It is important at this stage to try to provide
the appropriate level of supervision. This is often difficult to
determine and involves evaluating the risk of the behavior actually
or potentially occurring, the consequences should it occur and
the ease/discomfort involved in protecting the person with dementia.
Supervision can include simple reminder phone calls for medications,
alarms on doors to prevent exiting, and actual personal supervision
to prevent physical injury or harm. Some areas to review when considering
level of supervision include the ability to handle emergencies
when left unsupervised, ability to use appliances safely, and ability
to safely answer the phone or door when left alone. Wandering often
occurs in later stages when people may be confused about where
they are or are trying to find a familiar person or place. If there
is a concern about this, enrolling in the Safe Return program should
be considered. This program, which is administered by the Alzheimer’s
Association, provides national registration and identification
of people with dementia to assist in locating them should they
wander away or become lost.
For more detailed information:
Alzheimer's
Association Safe Return
Alzheimer’s Association |
Environment
Providing
increasing supervision is a difficult and time-consuming task for
many caregivers. If possible, modifying the environment to limit
exposure to potentially dangerous situations can allow patients
to continue to be independent and safe. Especially in the early
stages, reminders and cues in the environment may be enough to
keep the individual safe, for example, posting the steps involved
in a task or labeling where things are kept. Later, strategies
which limit the exposure to potentially dangerous situations may
be considered. Removing stove handles when using the stove is anticipated
to be a problem or using childproof handles on cupboards with dangerous
materials in them. When more supervision is needed, it is best
to assess each situation individually and gradually increase the
amount of supervision needed to maintain as much independence and
autonomy as possible in as safe a setting as can be provided. There
are some resources that provide tips and products to modify the
environment and protect the patient.
For more detailed information:
Alzheimer’s
Store
Products and information for those caring for someone with Alzheimer's
disease.
CareGuide@Home
Everything families need to understand, plan and manage care for their
elderly loved one. |
Print
Friendly Version

|
© 2008 The Regents of the University of California
|
|