By: Margaret Calkins, PhD
This is the inaugural column of BUILDING
IDEAS, which is dedicated to exploring the various ways the environment
influences and impacts on individuals with dementia and the settings
they inhabit/experience. While the major topics covered in each column
will be related to the theme of each issue, I invite you to write
in with your quirky questions, sticky issues, persnickety problems,
and creative or brilliant ideas. Let this be a forum for sharing with
others as we travel along our journeys with Alzheimers disease
and related dementias.
This issue is dedicated to caregiving, and so well focus
on ways of helping caregivers understand how the individuals with
dementia that they care for may perceive the world around them.
Much has been written about physiological changes, both those associated
with aging and those which result as a consequence of dementia.
These changes fundamentally impact how individuals with dementia
perceive and make sense of their surroundingshaving potentially
as great an impact as the cognitive changes they experience. It
isor should bean integral part of every staff education
program. Yet getting caregivers to understand how these changes
are experienced by people with dementiahow it impacts them
on a daily basisis challenging. This column will focus on
ways to sensitive caregivers to how some physiological changes affects
daily life of the people they care for. It is my belief that people
have a greater understanding of something when they experience it
for themselves. The classic example is having a baby. One can describe
it in great detail, but it will never be the same thing as actually
having a baby. Therefore, this column describes a series of reasonably
simple experiential exercises that will sensitive caregivers to
how some basic physiologic changes are experiencedand how
they affect an individuals perception of their environment.
It should be noted that none of these exercises will exactly replicate
the physiological changes they relate to. Rather, they are meant
to give a sense of how different daily life can be if someone is
experiencing a variety of physiologic changes. After each exercise,
ask the caregivers to describe what the experience was like, to
think about what would be hard for them to do on a regular basis
with that type of impairment, and the changes that caregivers can
make to compensate for these changes.
There are a
variety of diseases which significantly impact vision, diminishing
peripheral vision, clouding central vision, or limiting all vision.
Slides or photos of what these changes look like can
only give a limited sense of how these changes actually impact a
person. Buy inexpensive, low correction glasses (easily available
at variety and dollar stores), and lightly smear the lens with a
little petroleum jelly or chap stick, using a circular motion around
the lens. The goal is to still be able to see basic shapes, but
impair ability to recognize faces. Have caregivers wear the glasses
for 10 minutes while walking around the facility. To mimic some
eye diseases which affect one eye more than another, try modifying
only one lens. Alternative modifications include applying the petroleum
jelly/chap stick to only the outside edges of the lens, or only
to the center of the lens. To mimic the change in pupil size, which
limits the amount of light which enters the eye, have caregivers
wear sunglasses inside for about 30 minutes (you dont want
to induce real eye strain). Once theyve walked around the
facility for a while, and tried to read the signs, or see what food
is being served to them, or walked into the tub room, or walked
outside and back inside again, bring them back together to discuss
what the experience was like. What was hardest? What was most startling?
How did they feel? Can they think of residents whose behavior might
be explained somewhat by their vision impairments?
There are two
aspects of hearing changes that are important to sensitize staff
to. The first relates to the loss of hearing acuity in the range
of normal conversation. Have caregivers wear ear plugs (your maintenance
department may have some, a local pharmacy may sell them, or they
can be inexpensively ordered in quantity from most medical supply
companies). They should wear them around the facility for at least
an hour, if that is possible. This will get them somewhat acclimated
to how some sounds are screened out and very hard to hear. The second
aspect of hearing is more specific to dementia, and relates to the
decreased ability to filter or tune out noises that are common in
any caregiving setting, but particularly present in long-term care
settings. Find two tape recorders, and set them to record for 30
minutes in two commonly noisy areas (such as the dining room during
a meal, near the speaker for the call bells or alarms, near the
nurses stations, or wherever it happens to be noisy in your setting).
Then, during a meeting or training session, set these tape recorders
on opposite side of the room, and let them play at a moderately
high volume. After 30 minutes discuss whether people were distracted,
have a headache, or are particularly tired. Did they have a hard
time concentrating on the meeting? And how did they feel after they
wore the ear plugs for an hour. Many people begin to screen out
a lot of what is going on when they cannot hear well. Discuss how
these two changes in hearingtogethermight make people
with dementia feel.
Taste & Smell
sense of taste is linked to the ability to smell. Have a caregiver
wear a nose plug (often available at pharmacies or local sport stores)
and be fed a meal by another caregiver. If you serve a pureed diet,
have them try this food as well. Add one of the pairs of modified
glasses to give this activity even more reality.
a pair of thin cotton gloves (available from most medical supply
companies) to wear for at least an hour. Cotton is better than latex,
but if they are not available, large latex gloves will do (it is
important that they not be skin tight). Additionally, wrap tape
or a rubber band around the knuckles to mimic arthritis (be sure
not to cut off the circulation!). Try taping the thumb across the
palm of the hand, and ask people to go about their normal duties
for 20 minutes or so. Ask them to think creatively about how the
environment could be modified to make it easier for the residents
to pick things up and use them.
of conditions which affect movement and balance are extensive and
affect people in myriad ways. Some simple exercises to try include
wearing training weights (1-2 pounds each) on the ankles and wrists
for several hours (if they can be tolerated for that long). Alternatively,
have people spend time in a wheelchair or a geri-chair. Preferably,
this should be at least 4 hours, although a full day is best to
give a sense of the multiple barriers even a well designed environment
can place on wheelchair users. Alternatively, have caregivers put
15-20 navy beans or unpopped popcorn in their shoes and walk around
for a while. They will quickly see why distances that do not seem
long to them may be very long indeed for the people they care for.
Again, discuss how these impairments are likely to be experienced
by the residents, particularly those with cognitive impairments.
These are only a few experiential exercises that can sensitive
caregivers to how differently the world may be experienced by people
with different abilities and conditions. We focused here on ones
that relate to how changes in an individuals senses influence
his or her overall experience of the world around them. There are,
of course, a variety of experiential exercises that relate to specific
caregiving activities such as meals or bathing or incontinence.
We also did not discuss experiential exercises that reflect cognitive
changes associated with dementia. Wed like to be able to feature
some of these issues in future columns. If you have an interesting
experiential exercise that you use, send it in and well share
it with others in the future. Or if you have other environmental
questions or issues youd like to see explored in this column,
let us know. Well try to include as many as possible.
Margaret P. Calkins, Ph.D. Chair of the Board, IDEAS
Institute: Reprinted with permission from Aspen Publishers, Inc.,
Alzheimer's Care Quarterly (ACQ), Volume 2, Issue 1. Order by calling
1-800-638-8437 or on-line at www.aspenpublishers.com/journals/acq.