Dementia with Lewy Bodies (DLB)
Also known as Lewy Body Dementia
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Caregiving Challenges
Some of the challenging caregiving issues
with patient with Dementia with Lewy Bodies are: cognitive
decline, memory loss, visual/spatial problems and Parkinsonism.
Another challenge is the daily fluctuation
in cognition happening throughout the day. Some patients with Lewy-Body Dementia have
well formed hallucinations and sometimes delusions. The hallucinations
are usually not threatening to the patient.
The lack of memory for events or people can make the individual
extremely anxious about daily life. This can be exhibited with
asking questions, repeating information, preparing for appointments/day
care well ahead of time, and use of notes and reminders. Tasks
that used to seem routine become overwhelming, which can cause apathy
or a lack of initiative. For example, the person who has always enjoyed puzzles no longer
likes puzzles because they are too overwhelming and require
skills he/she no longer possess. Visual/spatial problems
are particularly noticeable, and he/she is often unable to even
copy simple figures. 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 others 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
As with all dementia, the major strategy is to keep the goal in mind.
Many caregivers are trying to make everything perfect and they get
very upset, stressed out and frustrated when the patient does not
cooperate as they plan. Therefore, try to use the good days and enjoy
the time with your loved one and continue to socialize, travel, be
physically active and participate in activities that are enjoyable
to both of you. The lack of memory for events or people can make
the individual extremely anxious about daily life. In more advanced
stages, the patient may not be able to recognize caregivers and family
members. That can be very distressing for both parties involved.
Often, familiar activities that may be well memorized will continue
to be enjoyable for the person with DLB and should be encouraged.
However, trying to learn new tasks or starting new hobbies may
be frustrating or overwhelming.
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.
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 DLB 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.
Safety
People with DLB have an increased risk of falling, because of the parkinsonian
symptoms, rigidity, small steps and bradykinesia (slow moving).
Installing safety bars in bathroom and
bathtub/shower can help with personal care. Some patients are helped
by a walker. They may need a reminder to use the walker. In some cases a wheelchair
is necessary, especially for going out of the house. Good
footwear is essential. Some DLB patients experience vivid hallucinations
but are usually not especially bothered by them, but it may confuse
them at the moment. Do not argue with the patient about the hallucinations.
Some patients may develop swallowing problems — monitor their
intake, especially the liquids, and if they persist talk to the
doctor (a swallowing evaluation may be necessary).
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 becomes 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.
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 he/she 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, use appliances safely
and 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:
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. When using
the stove is anticipated to be a problem, removing stove
handles is a good solution. You may also choose to use childproof
handles on cupboards with dangerous materials in them. When more
supervision is needed, it is best to assess each situation individually.
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.
Visit our Resources for Dementia with Lewy Bodies section.
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