There are many stages
of dementia. In fact even a few different scales that lay out
the stages of dementia. Regardless of the stage, dementia is
secondary to the person affected by it. It is important to stress
that this is a person FIRST and someone affected by dementia
second. Remembering the person they were before the dementia and
using that knowledge to make decisions about their care and their
routine is one way to maintain dignity.
Remember, that the person with dementia no longer has control of
their reasoning, speech, or memory. It becomes our responsibility,
as the well person without dementia, to make adjustments to help
them navigate their days.
Here are some ways to help maintain dignity:
Tone of Voice
When in a position of caring for another, it's common to revert
to a parental role - sometimes without even realizing it. This can
come across as condescending, disrespectful, or make the person you
are caring for feel like a child. Listen to your tone when you
speak - are you talking down to them?
Language
What about the words you are using? There are a few taboo words
that are undignified. Think about the words that you use that may
not represent dignity; words that indicate a baby-state, like
diaper, bib, potty. etc. Try to find alternate words that the
person used as part of their life before dementia.
Here are some examples:
- Diaper: underwear, special underwear, padded underwear, adult
pads, pad, or protective underwear.
- Bib: apron - take this a step further and actually use an apron
instead of a bib to protect clothing. You can allow the person to
help with meal preparation in ways that they can manage, such as
setting the table, stirring a mix, or tossing a salad - something
that helps them feel useful.
- Potty: the best approach here is to use the language that they
used prior to dementia. Did they say any of these phrases when they
needed to use the restroom - I need to use the restroom, I have to
pee, I need to tinkle, I'll be in the powder room? Using the words
they are used to using is not only more dignified, it is less
confusing.
Communication
Are you setting them up for success? Asking open-ended questions
can often be intimidating if the person does not know the answers,
but knows they should. A way of setting someone up for success is
to ask the question in a way that leads them to the answer. See the
examples below:
The WRONG way: Mom, tell Kathy how many children you have.
The RIGHT way: Mom, tell Kathy how much you enjoyed raising your
ten children.
Therapeutic Fibbing
"Therapeutic fibbing" is a concept designed to relieve the guilt
that often comes from lying to a loved one, even when that lie may
very well be the kindest thing you can say to them in that
situation. When the person you are caring for has dementia they are
struggling with more than just memory loss, they have also lost
their ability to use administrative functions - things like logic,
rational thought, sequencing, and emotional control.
Use therapeutic fibbing:
- When telling the truth would invoke pain, anxiety, or
confusion.
- When the person with dementia is experiencing life in a
different "time zone."
Examples of the use of therapeutic fibbing:
-
The situation - Your wife wants to drive to the grocery store
but you do not believe that she is a safe driver due to her
dementia.
Possible solutions involving therapeutic fibs:
- Have a stall switch installed on the car that will not allow
her key to start the car.
- Hide the keys so that when she tries to use them to start the
car they are not available.
- Offer to drive her to the store, since you need to go out
anyway.
-
The situation if you DO NOT use therapeutic fibbing:
- You explain to her that the doctor told her she cannot drive,
that she lost her license, or that you worry about her safety
because of her recent accident. She argues, (because she has no
recollection of any of these events) accusing you of making things
up. She gets increasingly angry and agitated, which makes you upset
as well. You either give in and let her drive, putting her and any
others out on the road that day in danger, or you spend the rest of
the day dealing with the repercussions of her increased anger and
anxiety, leaving you to feel exhausted and hopeless by the end of
the day. You worry about the next time she will want to drive and
what you will do then.
Tips for Successful Outings
When you care for someone with dementia it is easy to become
isolated, fearing that social situations will be too difficult and
stressful. This does not have to be the case! With some planning
and thought, an outing can be rewarding and a welcome change of
pace from the routine of the day.
Planning an outing
When you have control of an outing, consider the following
factors:
- How far away is it? Is this a trip that is tolerable or even
enjoyable for everyone?
- Time of day. When does the person you care for tend to be in
the best spirits? Is it early morning, lunch-time, or after an
afternoon nap?
- Setting. Does the person enjoy watching others, children in
particular, in a restaurant or park? Or does the person you care
for react negatively to ill-behaved children or extra
stimulation?
- Food choices. Does the restaurant have foods that are easy to
eat, cut, etc.?
- Plan extra time to get there.
Informing your loved one:
This varies in each situation. Some people do well with advance
notice of an event, while others will only grow anxious and ask
repeatedly when an event is happening. Some will not remember the
event, no matter how many times you remind them. Use your best
judgment about what your loved one is able to handle.
Tips for those who benefit from advance notice of events:
- Have a calendar with events written on it well in advance with
reminders as the event nears.
- Whether the outing is a doctor's appointment or lunch with a
friend, allow plenty of time to get ready and out the door.
Informing others of needs
Prepare others for the special needs of your loved one. This can
be done by calling ahead to the restaurant and speaking to the
manager, or by discreetly speaking with the host or hostess before
you are seated. You could also make a customized card and bring it
with you to the restaurant. Hand the card discreetly to the hostess
as you enter the restaurant and ask that they also share the
information with the server for your table. Information to include
on the card includes things like whether you will be ordering for
them, how you would like the server to speak to the person you care
for, and any special seating needs.
Relax and enjoy
If you are nervous about things going well, that anxiety will be
projected onto the person with dementia. One of the many effects of
dementia is the loss of filters, making them much more affected by
the emotions of people around them. If you are able to remain calm
and anticipate an enjoyable event, you are more likely to be able
enjoy yourself.