How should I respond when she doesn’t make sense?

pink dogwood flowersI often hear this question from family members. It makes us uncomfortable to find ourselves in a conversation with someone who is not making sense.

There are two reasons for why your loved one may make a statement that is nonsensical.

An altered sense of reality.

When people with dementia say something that doesn’t make sense or cannot be true, it may be sensible according to their personal sense of reality even though we know it is nonsense in our reality. The problem in this case is that they are losing rational thought and memory, which is skewing their ability to properly understand what is going on around them.

Without the ability to recall facts or events that have already happened, people experiencing dementia misinterpret what is happening in the present. Without the ability to use analysis, see cause and effect, or use comparison (rational thought skills), they arrive at even more erroneous conclusions.

If our response is to correct them, we are asking that they accept our version of reality – something different than their brains are telling them is true. But because they have dementia, they lack the very tools needed to consider and accept our version of the truth. That’s why their reactions are usually resistance and denial.

When people experiencing dementia are in error about reality or truth, it’s wiser to accept their version of the truth and try to work with it to make them more comfortable. It’s a kindness to refrain from asking them to use cognitive tools they no longer possess.

Loss of language skills.

Someone with dementia may also make nonsensical statements because dementia is affecting the part of the brain that enables them to use language to express themselves. If you’re in the grocery store shopping with a loved one who says, “You’re spending all my money,” she might actually be trying to say, “My, everything seems so expensive – we’re spending an awful lot of money right now.” The first statement is an overly simplified version of the second.

On the other hand, she may actually believe you have been spending her money against her wishes – a misinterpretation of reality. When you’re dealing with a false sense of reality, the best response is to not demand acceptance of your reality (i.e. “No, I am not – I’m doing everything I can to preserve your resources and spending my own on you!”). That would be trying to discuss facts with someone unable to do so. Better would be, “Oh, Mom, I worry, too. Everything seems so expensive.”

The better response is always to respond to the emotion behind the words. Someone who says, “They stole all my jewelry!” is expressing loss and indignation, whether factual or not. If you avoid the factual issues and respond to her emotions, you’ll avoid a fight. A nonfactual response would be, “Oh Mom, I’m so sorry… I felt so badly for you when that happened,” and then to move the conversation on to a happier topic.

When our clients’ ability to express themselves falters, we ignore their incorrect words or sentences and focus on their intonation and facial expressions. Their nonverbal communication displays the emotion they want to convey, which helps us discern intent and meaning.

When I respond to my clients in these two ways – accepting their version of reality and listening for the emotion and meaning hidden by their impaired vocabulary – they begin to feel safe talking with me, and feeling safer means less questioning or striving to be understood.

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What is the experiential self?

lupine paintbrush flowersOne of the most important things for us to understand as dementia caregivers is the difference between the remembering self and the experiential self. For some reason, it’s easier for us to grasp having a remembering self and harder for us to imagine the experiential self – that part of us that continues on despite dementia.

However, when someone is experiencing dementia, although they are losing memories and the ability to remember, they are not losing awareness of the present or the ability to experience what takes place in the present.

The remembering self.

I think of my remembering self as the part of me that has memory skills, such as the ability to use recall to search for and retrieve things that I’ve experienced in the past. It is also the part of me that feels nostalgia and familiarity and likes to reminisce with loved ones about the good times that we’ve enjoyed together. I have other memories that are not as fun to recall, but those are a part of my remembering self as well. My remembering self is the sum of my memory skills, all my experiences and memories from the past, and the good and bad feelings I have about them.

For people with healthy brains, the remembering self is alive and well – as is the experiential self.

Our experiential selves are the part of us that exists in the present and takes in the diverse information our senses are providing. I may jump at a loud sound, feel a surge of pleasure when a song I love comes on the radio, realize I am feeling hunger pangs, feel a sneeze coming on – myriad stimuli may be occurring in the present and I will experience them.

With a healthy brain, if I were to jump at a loud noise, I could use memory or rational thought to identify or interpret the reason for the noise. I could recall the sound of a whistling kettle or door slamming and not feel alarmed. With a healthy brain, I could also choose to tune out the present and the sensory data coming at me there and focus on a memory instead or on something I anticipate happening in the future.

For someone experiencing dementia and losing memory and rational thought, it’s not as easy to escape the present. Their remembering selves with their memories and memory skills are fading. Their rational thought skills are failing, making them increasingly unable to interpret the sensory data their experiential selves are delivering moment by moment.

But the data keeps coming in. That’s why it’s so important that we, as their caregivers, understand what the experiential self continues to do. The experiential elf continues on, in the present, experiencing.

Living with the experiential self alone.

Although our loved ones and clients are not able to recall, interpret or express ideas regarding their experiences, they are still having experiences. Their experiences are causing them pain and relief, happiness and sadness, fear and anger, just like ours are causing us. They, however, are less able to choose to leave the present for a happier memory or hopeful future.

When someone is experiencing dementia, we need to be careful that we treat them respectfully and kindly at all times. They will become unable to describe how they feel, but they are not unable to feel.


Is diagnosing the specific type of dementia important?

mountain stream with spring runoffWhen I first start talking with families about a loved one who’s showing signs of dementia, they often are very concerned about what type of dementia their loved one might be developing. Sometimes families will put a great deal of time and money into trying to identify exactly which form of dementia they are facing. My first question to them is always, why do you need to know?

I think we believe we need a specific diagnosis because we are mistaking the condition of dementia for a disease. It’s important, however, that we understand when diagnosis is needed and helpful, and when it diverts our attention and efforts from what’s far more valuable: learning how to provide care.

When someone is diagnosed with a disease, we should know exactly how the disease is progressing so we can make educated and appropriate decisions regarding treatment. If I were to learn that I was developing cancer, I would want to know what type, how far it had progressed, exactly where it was growing, and all of my treatment options in detail.  I would need all that information to make a wise decision about which treatments to pursue.

The goal with diagnosis is to isolate the best treatment. But with dementia, we don’t have treatments or cures (yet). Once we know dementia is present, it’s time to focus on learning how to maximize quality of life for the person and his or her family and caregivers.

Here at DAWN, our dementia clients have come to us with a variety of dementia diagnoses. Of course, the most prevalent has been the dementia that results from Alzheimer’s Disease, but we also have seen vascular, mixed, frontal lobe, normal pressure hydrocephalus, Parkinson’s, Korsakoff syndrome and dementia that follows earlier traumatic brain injuries. Regardless of the type of dementia, however, we find that the DAWN Method helps us and their families provide care.

My goal has always been to help my neighbors (who became my clients) find ways to continue living at home with as much enjoyment and fulfilment as possible. When I turned to books on dementia and dementia care, I found a lot of supportive advice and commiseration – and the belief that dementia-related behaviors were unavoidable and inexplicable. It sounded like using drugs and locked doors were the only recourse, but I still wanted to find a way to make life better for these people I’d grown to love.

So, although the way they acted seemed random and unpredictable at first, I stayed focused on their emotional distress. Emotions cause our actions and reactions; if I could find a pattern of emotional needs, I knew I could help my clients feel more comfortable. What I found were three specific security needs and four well-being needs. The DAWN Method teaches families to recognize and meet these needs.

Once I began responding to my clients’ emotional needs, I began to see their abilities and disabilities in patterns also. It didn’t matter whether they had dementia due to Parkinson’s or an earlier head injury or Alzheimer’s, they were losing rational thought but not intuitive thought, and the remembering self but not the experiential self.

When we are responding to a condition, we need to provide care. Conditions are something we must learn to live with. Care supports the whole person, not just physical health.