Some time ago, a very distraught, exasperated and exhausted-looking woman came into my office to talk to me about her husband. No sooner had Mrs. Smith (not her real name) sat down and grabbed a tissue than the words began to flow. All of her emotions, fears, feelings and frustrations came to the surface and she poured her heart out for a full 15 minutes before I even spoke a single word. When she stopped, she just looked at me. My first words to her were, “How do you feel now?” and she answered, “I’m a bit embarrassed. Relieved, but embarrassed.”

 

And then she cried. Her story? Her husband, Joe, (not his real name) has dementia and things have gotten worse over the past year. Mrs. Smith felt that she had reached the end of her rope, was no longer able to care for him and wanted to know how soon could she move him into our community. She was afraid that if she kept him at home much longer, her frustration and exasperation would overshadow the love she had for him.

 

They had been married for almost 57 years and she wanted to remember the good times and the man he was but it was getting harder and harder every day. When I asked what in particular had been the final straw that brought her into my office, she said that he was wearing her out because he was being obstinate. When I asked her to explain, she said that he wouldn’t dress himself appropriately or do his grooming such as shaving or brushing his hair.

 

And he often would talk about needing to go into the office to get some extra work done.

Frustration builds

Joe also was talking about deceased family members as if they still were alive and lived in the same town as he did. Or when she would remind him of a previous conversation, Joe would tell her she didn’t tell him that.

 

“It’s as if he is deliberately trying to pick a fight with me by being lazy or pretending to not understand me or remember things. It’s not like he isn’t smart. He was the CEO of a very successful company for many years.”

 

In talking with her, I asked Mrs. Smith to share with me a typical day at home with Joe. As she was relaying her day to me, I could see the mounting frustration in her face. Once she finished, I leaned in, took her hands and told her I thought I could help if she were willing to work with me.

 

But it would take some time and practice to rethink her approaches to talking with Joe. She needed to learn how to speak in “dementia.” We spent the next hour talking and she came back to see me a couple more times after that. A couple of months later, Mrs. Smith came to see me again but this time she was all smiles and looked much more relaxed and happy. She said that things were much better at home now that she better understood what he was going through. So what was the secret to this transformation? Mrs. Smith learned how to speak “dementia” to Joe.

Altered reality
Dementia changes people. It changes their reality. It changes their ability to complete everyday tasks that once were second nature. And then dementia takes a break and it seems as if all is well with your loved one again. Unfortunately those breaks usually are short-lived. But instead of talking about dementia and how cruel it is, I want to give you some tips on talking to and living with someone who has dementia. People with dementia can live through a number of different eras within the space of a day, essentially becoming “time travelers.” What is “dementia” to us is “reality” to our loved ones with dementia … we need to embrace and endorse that reality.

Tried and true techniques

The three main techniques that most commonly are used when talking or working with your loved one are gentle deception, redirection and validation. They all have their pros and cons and may not always work depending on a number of variables, including the circumstances, the mood of your loved one and your believability when using one of the techniques.

 

Gentle deception probably is the most troublesome of the techniques. It can work in a pinch, but it also can destroy some trust, depending on the level of dementia. The person may remember the lie and the dishonesty then can undermine the relationship. But it can be effective in the later stages of dementia if the other two techniques don’t work.

 

Redirection and validation therapy are not quite as simple to use, but they are more honest on an emotional level. For example, if Mom insists that she and her long-dead friend Mavis are going out dancing, here are some possible responses:

 

• Gentle deception: “Mavis won’t be here until later, Mom. Let’s go to the mall for a while and take a walk.”

• Redirection: “I can see you miss having outings with your friends. I share your frustration. The senior center is offering waltz lessons. Would you like to sign up?”  

 

• Validation therapy: “You wish you could go out dancing again. I remember how beautifully you used to dance. What was it like to go out dancing with your friends? Isn’t that how you met Dad?”

Success stories

• Gentle deception: When Mom said her parents were coming, he assured her they were, but it would be a while because of traffic. When she said she needed to go to their funeral, he told her to go ahead and eat dinner while he made the necessary arrangements. Shortly all was forgotten, but because he showed her that he appreciated her world, it was done without the hurt, confusion and stress.

 

• Redirection: Joe (agitated): I need to get to work. I’m going to miss my train! Mary: OK Dad, but I just made breakfast. How about you eat with me first and then I’ll drive you to the station. You’ll make the train and get a good meal that way.

 

• Validation: When Grandma asks, “Have you seen my husband?” don’t remind her that he died 20 years ago. This only will upset her. Instead repeat the question back to her as a statement, “You’re looking for your husband.” Then add, “Tell me about your husband.”

 

For those of us raised with good values, the realization that it is sometimes “OK to lie” can be long in coming and difficult, particularly when the person we are lying to is a parent. People with dementia sometimes display behaviors that seem out of character or are far too emotional for a specific situation. Sometimes their behaviors are due to delusion or hallucination.

 

Redirection techniques divert those individuals’ attention away from the stressful event to something that is more pleasant. Validation therapy runs the fine line between bluntly explaining reality and simply allowing a person with dementia to believe what he or she wants. It often integrates redirection techniques, but it is not solely about moving an individual’s attention from one thing to another; it also is about validating feelings and emotions.

Improvise as you go

Obviously, techniques and their usefulness depend on what seems sensible in the situation. You’ll need to be creative and experiment to see what works and what doesn’t with your loved one. People with dementia pick up on body language. Be warm and open when redirecting, to reduce stress levels and/or tension. Ask pointed questions. Try to get to the bottom of any unexplained behavior. It will make it easier to redirect if you understand the context.

 

When it comes to having your loved one perform personal tasks, it’s important to use one-step directions in a short sentence along with a smile and encouragement. Instead of: “I got your bath ready so you can get cleaned up and get some fresh clothes on.” Try, “Let’s go have a bath.”

 

At first glance these approaches may seem counter-therapeutic. They all share a focus on validating the person while not trying to force them to face reality. Trying to reorient a person with dementia to reality can be exhausting to the caregiver and usually it is futile. Techniques such as temporarily entering their reality or distracting them from their question succeed in avoiding confrontations, but sometimes there is a price.

Emotions often defy logic

Don’t get caught up in whether or not something makes sense. Individuals with dementia may not be able to piece everything together, but their emotions still are valid. In fact, their distress or anxiety can be amplified when they aren’t being understood. Accept that your loved one’s emotions have more validity than the logic that leads to them.

 

Remember, your loved ones with dementia are living in a different time from you or me. When they talk about people or places from the past, it sometimes helps to go along with them instead of correcting them. This can help create a calming connection between you and them.

 

Try repeating back what they say and then ask them to tell you more about that person or place. This helps them to utilize the parts of their brain that still are working and alleviates anxiety by allowing them to re-experience their fond memories.

Go along to get along

Reawakening a person to the fact that he or she has dementia used to be the social norm, even for caregivers. It was even considered a “gentle reminder” or “correction.” However, we know better now. These small reminders shatter that person’s reality and repeated experiences can be psychologically damaging.

 

Dementia affects the brain but the person retains his or her humanness and still has a mind, an ego and feelings that should be respected. It’s cruel to force a person with dementia to accept aspects of reality that he or she cannot comprehend.

 

So if, for example, your loved one is excited about a new job (that doesn’t exist), it’s better to offer congratulations than to correct him or her. Of course, this is sometimes easier said than done.

 

In this article, references to dementia are of all types, including Alzheimer’s disease. The examples of the various techniques were taken from a variety of dementia and Alzheimer’s resources.

 

 

For more information and resource assistance, please e-mail Pam Scott at info@discovery-mc.com or call 683-7047. Scott is the community relations director for Discovery Memory Care in Sequim.