Disorientation and Confusion in Dementia
Dementia can be stressful and anxiety-provoking. Symptoms of dementia such as memory loss, confusion, and disorientation are often present. Although the cause of dementia is complicated, being with someone living with it, it does not have to be.
There is no cure for dementia, nor is there a viable treatment to reverse the process. There are great techniques for improving the quality of life for both partners in care. Validation theory is one of the best.
What Is Validation Theory?
Origins of Validation Theory
Naomi Feil developed Validation Theory as a way to convey empathy to people living with dementia. Validation techniques can help to reduce anxiety by increasing connection and decreasing confusion.
Reasoning Behind Validation Theory
Disorientation often stems from confronting or correcting a person’s reality. Confronting a person or correcting what they say is not usually an effective way to address anxiety and agitation and often increases these feelings. I am sure you have experienced this yourself.
Think of a time when you disagreed with someone where their reality differed from your own. Maybe it was while driving. In your reality, a driver cuts you off. For the other driver, they felt they had plenty of room to merge. These reality differences happen in little ways every moment of every day.
Each of us lives in our own personal reality. We all make unspoken agreements to create a consensus reality. For example, we agree on what year and time it is. We agree that paper currency, plastic cards, and numbers in computers have a common value. We agree that we have to cover certain parts of our bodies with clothes. Every day we are usually unaware of these little agreements.
The changes associated with dementia can make these differences in reality more dramatic. This makes it harder for someone with dementia to agree with someone that is not affected by it. Dementia can also make the differences harder to communicate, further compounding the challenge. Combine this with dementiaism, the systemic bias against the value of the perspective of those living with dementia, and you can see where the frustration comes from.
For example, a person living with dementia may believe it is 1947. For them, this feels as real as you knowing it is 2020. Narratives about people living with dementia being ‘already gone’ and ‘shells of themselves’ teach us not to value their perspective. Therefore, we dismiss and correct them. Understandably, this causes frustration for both parties. There is another way to approach this that will not result in as much frustration or anxiety.
Why Validation Theory Works
Validation theory states that whenever there is upset (anxiety, agitation, depression), it points to an underlying unmet need. Thus, the difficult behaviors exhibited by people living with dementia are due to one or more unmet needs. Below are some examples of needs and expressions. These are singular examples for each need. In reality, there are a plethora of ways each need manifests.
Examples of Unmet Needs
- Need to resolve unfinished issues in order to die in peace. Wanting to call a loved one who died some time ago.
- Need to live in peace. “Leave me alone” or having strong opinions about how things should be done.
- Need to restore a sense of equilibrium. When eyesight, hearing, mobility, and memory fail, they may hold onto a wall for support while walking or avoid the dark tiles on a multi-colored floor.
- Need to make sense out of an unbearable reality. To find a place that feels comfortable, where one feels in order or in harmony, and where relationships are familiar. They might call new people by the names of past friends, crafting a story of reality that makes sense to them.
- Need for recognition, status, identity, and self-worth. Repeating who they are or stories of past accomplishments.
- Need to be useful and productive. Finding tasks such as organizing papers left out on a desk, packing a suitcase, folding laundry. These tasks likely will not be done the way you desire.
- Need to be listened to and respected. Raising of voice and making demands and threats to alert figures of authority.
- Need to express feelings and be heard. Crying, laughing, dancing, yelling.
- Need to be loved, to belong, and to have human contact. Reaching out to touch those that walk past.
- Need to be nurtured, feel safe and secure, rather than immobilized and restrained. Removal of restraints. Trying to dismantle locks.
- Need for sensory stimulation. Tactile, visual, auditory, olfactory, gustatory, as well as sexual expression and flirting.
- Need to reduce pain and discomfort. Attempting to wrap painful body parts.
These needs may ring a familiar bell. That is because they are universal. What changes in the context of dementia is what it takes to meet them. By uncovering and meeting the need, you can decrease the upset.
In the example above, the person may have needed it to be 1947 to resolve some unfinished business from that time. By pulling them back to 2020, that need was not met.
How to Use Validation Theory with a Person Living with Dementia
How are these principles applied in real-life situations? To use a validation theory approach, start with acknowledgment, then honor and act. Let’s break that down.
Three Easy Steps to a Validation Theory Approach:
1. Acknowledge what the person is expressing. A parent may ask over and over to go home. In your reality, they moved many years ago. Rather than saying: “Mom, you moved here years ago!!” try a response that opens communication. For example, “Mom, I hear you want to go home? What would you want to do if we were home right now.” Use the improv tactics of “yes, and..” instead of fibbing or correcting.
2. Honor. Ease anxiety by honoring the feeling behind the request. Get to the heart of what your family member needs. Are they cold, hungry, fearful, or in pain? To build on the previous example, imagine the mom responded with, “Oh, we would sit on the back porch and have lemonade and watch the fireflies.” Then the daughter could respond, “Oh, that lemonade sure was something, so refreshing and those fireflies beautiful. I wish we were there too.”
3. Act to meet the need. Next, put on your ‘Sherlock Holmes’ hat and investigate what needs the person with dementia is expressing. In the above example, the desire for lemonade could signal thirst. The addition of the fireflies could be a desire for beauty. Put them together, and there is also a connection from shared experience. Once you have your theory on the unmet needs being expressed, experiment with ways to meet them. Maybe you can find some lemonade and a porch to sit on and imagine fireflies together. Or perhaps you can find a photo of that old porch and have it hung on the wall of this new home. Or maybe just being together and remembering that porch and those warm summer nights is just what the doctor ordered.
Much of how a validation approach works is the new frame it gives for scenarios. Someone asking to go home all the time can be frustrating for both parties. This frustration can be exacerbated if we feel we can’t do anything about it because the home in question is gone.
A validation theory approach offers a different frame. The request isn’t about the home precisely it is about an unmet need. That we can do something about! The next time you notice an unmet need, try acknowledging, honoring and acting.
How are these principles applied in real-life situations?
It is common for folks with dementia to forget that they have lost a spouse or to want to go to a previous home. Seeking a lost spouse or home is an expression of an unmet need. The need will be different for each person.
Looking at the above list, you could start with some of the more likely ones: need to be loved, belong, have human contact or a nurturing experience, or feel safe. These expressions of need, such as wanting to go home, will be repeated repeatedly until the need is met.
Pro Tip: While the request may be specific, such as, “I want to go home”, the solutions to the need “feeling safe and secure” can vary.
It can be tempting to tell a ‘white lie’ such as, “You can go home tomorrow, but isn’t it nice here?” This fib may deter the expression of the need now, meaning that the person may not ask again right away to go home.
This tactic, however, does not uncover or address the unmet need. So, the request will come up again and again. Besides not being a lasting solution, telling a fib does not honor the person’s reality and needs. It is like putting a band-aid on a wound that needs stitches!
5 Common Scenarios
Wanting to call a loved one who died some time ago.
- Acknowledge. “I hear you have wanted to call Aunt Sally.”
- Honor. “Yes, but they won’t let me use the phone.” may come the reply. One response could be. “That sounds frustrating. What do you want to say to Sally?”
- Act. “You wouldn’t understand, but I NEED to talk to her. I have to tell her something vital.” Here you could identify that the unmet need to resolve unfinished issues to die in peace. Get creative! Would creating a voice memo work in place of voicemail? You could even go and play it at Sally’s grave. Could you write a letter? Make a collage? How can you act to support the need to resolve unfinished business?
Repeatedly stating, “Leave me alone.”
- Acknowledge. “Okay, I will leave you alone.”
- Honor. Then walk away. Actually, leave them alone. Autonomy and choice are often lessened post dementia diagnosis. Finding opportunities to honor choice are significant.
- Act. This may be an expression of needing to live in peace. If this is someone you want to or are required to spend time with, think of ways to be with them that don’t disturb their peace. Be around without making direct requests or deciding what help they need. Let them come to you. For more about how to do this, read this story about what I did when a client told me to leave them alone repeatedly.
Repeating stories of past accomplishments.
- Acknowledge. Listen to the story, even if you have heard it many, many times or have a different memory of it yourself.
- Honor. Often repeating stories point to a need for recognition, status, identity, and self-worth. Try listening to the story with fresh ears. Listen for what parts of their identity they are trying to highlight. Test your hypothesis by reflecting how the story shows that aspect. For example, “Wow, it sounds like you were really brave.”
- Act. Once you have confirmation of the part of them needing recognition, brainstorm ways to celebrate it. Is there an award or photo that can be displayed? Can you bring up and validate the attribute more often?
Finding tasks to do such as organizing papers left out on a desk, packing a suitcase, folding laundry. These tasks likely will not be done the way you desire.
- Acknowledge. Imagine you come upon your spouse reorganizing (or, from your perspective, unorganizing) papers in the office. Resist the urge to yell ‘Stop it!’ Try instead to get curious. “Hi honey, it looks like you are busy.” Try to keep the conversation going until you can uncover the motive behind the reorganizing. Are they looking for something? Are they worried? Are they bored?
- Honor. Oftentimes finding tasks to do comes from a need to be useful and productive. Once you have uncovered the motivation behind this task, honor it genuinely. “Oh, that is so thoughtful of you to be worried about our finances, I know you don’t want to be a burden. Don’t worry, you aren’t, and we are okay.”
- Act. Once the need is uncovered, how can you meet it in a way that satisfies you both? No one wants to feel useless or like a burden. Finding new roles in the house can help. In the scenario above, they could try getting and sorting the mail together. Rather than focusing on what your loved one can’t do anymore, focus on what they can do and how to support them in it.
Crying, laughing, dancing, yelling.
- Acknowledge. Again resist the urge to yell, “Stop it!” respond to the tenor of the emotion being expressed. Let’s say your loved one is dancing while you are at the grocery store. Smile and reflect “you seem like you are having a good time.”
- Honor. Then explore what may have prompted the dancing. Do they love the song playing? Are they reminiscing? Are they excited about how many kinds of cereal there are? Crying, laughing, dancing, yelling, etc. are often showing a need to express feelings and be heard.
- Act. If you are brave enough, dance right with them there in the grocery store. Express those feelings and hear your loved one. If that is not an option, be sure to create spaces for free expression. Have regular dance parties at home, save different songs that connect to different moods. Engaging in other arts, visual, culinary, etc., are also great ways to express feelings and be heard. Need ideas? Check out these holiday ideas that are good for any time of year.
Tips to Keep in Mind When Using Validation Theory
1. Avoid confrontation. If you are trying to offer a calming presence to someone living with dementia, avoid confrontation. Confrontation is likely to escalate the situation. Instead, try validation.
2. Avoid reasoning and explanations. Your loved one may not be able to process the information the same way you do. How to communicate with someone living with dementia is quite different than communication with someone without it. If you give reasons and explanations they may become even more insistent and distressed. We can’t know what anyone is feeling inside. In the context of dementia, communicating this can become even more difficult. Anger may be utterly unrelated to the stated subject. Try your best to honor and respect whatever the feeling is. Your parent or spouse may be in pain or some other discomfort. Perhaps they are tired or bored.
3. Never fib. According to Validation Theory, it is never acceptable to lie. Instead, try and get to the heart of the matter. Realize that people living with dementia are trying to retain some sense of control. Be as calm as possible to create a sense of security and comfort. Both of you will benefit.
Benefits of Using Validation Theory
Using Validation Theory may take a little more time at first as you train your brain to notice unmet needs and find ways to meet them. The reward for this little bit of extra effort up front will be returned exponentially for both you and your loved one living with dementia. According to the Validation Training Institute, using Validation can provide marked benefits for people living with dementia and those that love them.
Potential benefits for older adults living with cognitive decline:
- Siting more erect
- Keeping their eyes open more.
- Displaying more social controls.
- Crying, pacing, and pounding less.
- Expressing less anger, fear, and other painful emotions.
- Communicating more verbally and non-verbally.
- Withdrawing less.
- Experiencing an improved sense of self-worth.
- Assuming familiar social roles in groups.
- Developing an enhanced awareness of reality, even though this is not a goal of Validation.
- Finding their sense of humor.
Benefits for care-partners, both at home and in care communities experience:
- Decreased need for chemical and physical restraints
- Increased morale is increased
- Decreased burnout sense of fulfillment at work.
- competence when handling difficult situations.
Benefits in the family’s experience:
- More joy with their loved ones.
- Improved relationships.
- Better communication with their loved one.
- Greater understanding, less anxiety, guilt, or anger.
Start small in a moment that is not very upsetting for you or your loved one. Bring an attitude of playful experimentation. Once you begin practicing validation theory, it will become easier and easier.