Dementia Patients & Dignity

Respectful Caregiving

When someone close to you has dementia and spends an increasing amount of time in a confused state, it can be difficult to remember the person they were before the disease began to take control. However, it’s important to remember that he or she is an adult, not a child, and deserves to be treated as such. Honoring your loved one’s wishes, including helping him or her maintain a similar lifestyle to the one they had before they got sick, will bring him or her a lot of comfort and reassurance. Here are some ways to help those with dementia patients maintain a sense of dignity:

Don’t Condescend

When you’re actively caring for someone, including helping them through the basic activities of daily life, it can be hard not to take a parental tone. This can come across as condescending, disrespectful, or make the person you are caring for feel like a child. Watch your tone and word choices, and try to speak to your loved one as an equal whenever possible. Avoid using words like the following:

• Diaper: Regardless of what form they take, refer to undergarments as underwear. You don’t need to call attention to their protective or “special” qualities unless your loved one has specific concerns about making it to the bathroom as needed.
• Bib: Call this an apron, or actually use an apron if your loved one needs something to protect his or her clothes during mealtimes.
• Potty: Use the words your loved one commonly used pre-dementia to refer to toileting. “Do you need to use the bathroom?” is a perfectly adequate phrase for all stages of life.

Ask Leading Questions

Set your loved one up for conversational success by replacing open-ended questions with ones that are easier to answer. For example, says something like “Mom, tell Kathy how much you enjoyed raising your 10 children,” instead of “Mom, tell Kathy how many children you have.”

Use “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. Those with dementia often stuggle with logic, rational thought, sequencing and emotional control. Therapeutic fibbing may be appropriate when telling the truth would cause pain, anxiety or confusion, or when the person with dementia is experiencing life in a different “time zone.”

For example, say your wife wants to drive to the grocery store, but you do not believe that she is a safe driver due to her dementia. Instead of telling her that she’s no longer safe to drive, you could tell her that the car is in the shop for repair, tell her that you’ve misplaced your keys or tell her that you’ll drive her to the store, since you need to go out anyway.

Plan Successful Outings

When you care for someone with dementia, it’s easy to become isolated out of fear that social situations will be 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:

• Distance: 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? Plan extra time to get there.
• 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 Choice: Does the restaurant have foods that are easy to eat, cut, etc.?

Preparing Your Loved One

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.

Preparing Others

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 & 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.