Two Words Every Dementia Caregiver Should Know
By Shelly Webb from Coeur d'Alene, Idaho
Like most caregivers, I began my experience quite unexpectedly. My
father, who had been living in southern California, came to live with me
in Northern Idaho. The day he arrived, I knew that something was amiss.
The first thing I noticed was that he didn’t know how to work the coffee
maker. Being of Swedish decent, he had always drunk at least a pot of
coffee per day, so not being able to carry out the steps to make it was a
significant event.
As the weeks and months passed, my suspicions that my father had
dementia were confirmed and so I sought advice from the local
Alzheimer’s chapter which offered classes and a support group. I should
probably stop and mention here that I have been a registered nurse for
over 30 years so I tend to dive right into anything that will help me to
understand a condition or diagnosis.
During my studies, I learned of two important terms that have helped me
to be able to understand the actions (or inactions) of my father at that
time. These two terms are anosognosia and confabulation.
Anosognosia is a lack of knowing that an impairment, deficit or illness
exists, in memory, thinking skills (such as language or math), emotions
or movement. The term refers to brain cell changes that lead to this lack
of self-awareness. It’s not denial. In denial, a person may accept that he
is ill, but will avoid dealing with it by not taking prescribed medicines.
With anosognosia, the person is not fully aware that there is an illness.
This is difficult for caregivers because they are trying to help a person
who insists he or she needs no help. My father repeatedly said to me
“don't be ridiculous, Shelley, I am not an invalid”.
When I say "not fully aware", I mean that there are levels of
anosognosia. Some researchers use a rating scale which translates as
follows:
Level 1 - easily admits memory loss
Level 2 - admits (sometimes inconsistently) to small amounts of
memory loss
Level 3 - not aware of any impairment in memory
Level 4 - angrily insists that no memory problem exists
Because many dementias are progressive, so will be the level of
anosognosia. At the time I originally learned of the term anosognosia,
my father's dementia was somewhere between stage 2 and stage 3. He
was aware that he had "some" memory loss but was not aware of how
severe it was. One day, we looked for his keys for over an hour, even
though they were in his pocket and even though he found them IN his
pocket every 3 minutes. As soon as he placed them in his pocket, he
would begin searching again and I would remind him again where his
keys were. Clearly the keys were very important to him.
Anosognosia also comes into play when dealing with a family member
who is married to a person with dementia. They may be aware that the
spouse has some "issues" but are not able to realize how severe the
issues are.
Keys to interacting with persons who have anosognosia and/or
tendencies to confabulate (or really any type of dementia) are to use
positive approaches.
For instance, instead of saying "The doctor prescribed these pills and
you have to take them!", say "when you take your multi-vitamin, how
about taking these "brain vitamins" that the doctor suggested to help
keep your memory strong?" Instead of saying "You're not paying the
bills on time and we're getting late fees! I'll take over the bills from now
on" say "Let's write out the checks together and after we're done, we'll
mail them and go out for a nice breakfast".
People who demonstrate anosognosia will also often confabulate. This
is a tricky process to understand. A person will take pieces of
information and link them together in a way that is false. But a
confabulation is not a lie. It is an inability to differentiate between what
really happened, what didn't and when or where it happened. For
instance, my father saw a delivery truck drop off a load of plywood and
fencing material into the yard where we were building a fenced-in
garden and chicken coop. I left the delivery receipt on the table and
noticed him looking at it later that day. The next day my mom called and
asked why I was making my dad pay for our chicken coop. Dad took
those 2 pieces of information and confabulated that he had purchased the
supplies.
Typically, confabulation is done in order to answer the question or
CONTRIBUTE to the conversation. To those who don't know the person
well or weren't present during the event (that may or may not have taken
place), the statements may seem perfectly plausible. My father also once
told a relative that my daughter was flying to Europe for a convention on
international business (which was news to both my daughter and me) but
since her college major was business, it seemed completely believable
that she might do this.
Confabulation can sometimes cause embarassment or even problems for
the caregiver. This is one reason to keep careful records of your
caregiving tasks. Dementia patients have been known to confabulate
events which might lead to caregivers being questioned about their
caregiving practices. "No, she doesn't feed me and I've lost 10 pounds
since living there." But the person who is doing the confabulation
believes what they are saying and should be treated with respect and
dignity.
Caregiving is difficult, but the more we understand the mechanisms of
the disease process and that it IS a disease process, the more we learn
how to improve the caregiving process and experience.