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Maintaining Dignity for Dementia Patients

Last updated: March 25, 2013

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.

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