[10] Horizons: Dementia Emotions

Dementia Horizons | Workshop 10 | Dementia Emotions

Video Module 10 Transcript

Welcome. Let's start by saying that all of us change as we age. Our thinking speed may slow a bit, and what we remember may fade slightly. This is normal. However, if you or your loved ones sees or experiences several clues, signs and symptoms that may seem unusual, inappropriate, or excessive, then it's worth making an appointment with a healthcare provider. As you will learn, Dementia is much more than memory loss alone.

What follows is a short list. There may be issues with planning, organizing, and decision making, as well as changes in how one walks and talks, not to mention increased anxiety, possible hallucinations, trouble with sleep, tremors, visual disturbances, and much more. There is no universal journey of Dementia. Each person's path is unique, but they share common experiences. Some symptoms may be treatable, but at a minimum, many are manageable. It is important to note that Dementia is a syndrome and not a disease. That means that Dementia is a word we use to describe a group of symptoms that often occur together.

Dementia Emotions

Severe and progressive cognitive changes are usually caused by one or more underlying diseases or disorders. Cellular changes happen within the brain tissue itself. The brain often shrinks. Most people are unaware of these microscopic changes. While others may experience more noticeable physical symptoms such as tremors, urinary incontinence, falls, or headaches, there may be a vague sense that something is wrong with their ability to think clearly. There may also be feelings of frustration, trouble recalling names quickly, worrying about getting lost in familiar places and anxiety about these changes. Because of this, the individual often becomes more withdrawn and less engaged in their normal interests, routines, and activities. Fears of making a mistake or not fitting in may develop. On the other hand, there may be no personal insight or awareness of their changes in memory, behavior, or personal hygiene. Imagine for a moment the frustration of struggling with everyday activities like grocery shopping, paying bills, or remembering what you had just eaten or read. These are day-to-day activities, once done on autopilot, that are now challenging.

Author, psychologist, and international Dementia community advocate, Dr. Richard Taylor, who had been diagnosed with younger onset Dementia at the age of 61, once wrote retrospectively: "Sometimes I am clear in my vision and memory. Sometimes I'm disconnected. There is an unpredictable shift." To better understand this unpredictable shifting, think of the brain as a loose light bulb. Sometimes the connections in the brain are stronger than others. Sometimes they are not. This uncertainty can confuse those observing, leading to questions about whether the person really has Dementia or is getting better. Are they acting on purpose, faking it, or simply seeking attention?

It is important to realize that these alterations in cognition are likely the result of a degenerative disease process within the brain. A person living with Dementia cannot control what is happening inside their brain. Their outside appearances and their physical abilities may not have changed. So detecting these subtle clues is particularly challenging for those who don't live with them, like a doctor or a family member who only checks in by phone. It is easy to forget or have a lack of appreciation for what is happening on the inside. So how can you be intentional and show support despite these changes that they are loved, cared for, and valued? Dr. Taylor eloquently shares what it might feel like to be living with Dementia: "I am still me, perhaps a different me from what I have ever been before."

There are other practical ways to help individuals living with Dementia feel respected. For starters, if you are conversing with them, look and speak to them directly at eye level as best as possible. Do not direct your conversation with them at someone else. They may feel unimportant and less valued. Refrain to the degree possible from speaking frankly about their situation in the third person, as if they were not there. If needed, remove yourself from the conversation and indicate that you'd like to talk with that other person separately. Secondly, allow time and space for the person living with Dementia to vent, express how they feel and even grieve when there has been a loss. Another learning is to realize that while you may worry about them, they are also worried about you. They may be concerned about becoming a burden or that you will tire of them.

Reassure the person that they are safe in your presence. Smile, speak at a slower pace. Speak clearly, enunciate and speak loud enough based on hearing abilities. When having difficulty communicating, you can use different words, images, or body language, but pay attention to the most fleeting facial expressions so you can hopefully pick up on any hidden pain, discomfort, or anxiety. You can also look for joy, happiness, and contentment.

Introduce yourself by name and use their first name. Often, a simple touch of the arm or shoulder can be meaningful, and a positive statement about how they look will always win you bonus points. Avoid asking "Do you know who I am, or don't you?" Remember, ask the person's opinion or preference, and give them a couple of simple choices or, if necessary, suggestions.

It also helps to keep a sense of humor. It can ease anxiety and perhaps frustration for everyone involved. Everybody loves to laugh. Plus, it lowers stress hormones as we see a loved one experience changes in behavior and thinking.

It's not uncommon to unintentionally change how we treat them. Let's look at a few other common ways people hurt others without realizing it. As the relationship changes, it may harm the person's ego or confidence by consistently pointing out their faults. Instead, work on supporting the person's remaining abilities. Unfortunately, negative stereotypes exist and people may be treated like a child. This is demeaning and disrespectful, causing further withdrawal and anxiety. Even for conversations and decisions that are difficult, it is essential to treat the person as an adult, and whenever possible, encourage independence and inclusivity when making decisions. Also, try not to jump in and complete their thought or task automatically. Instead, be patient. Allow more time for them to think of a word or take an action, and if warranted, ask if they want some assistance.

Hopefully, you now have a better understanding of what it may feel like to live with Dementia emotions, what may help and what may hurt. The bottom line is that a person living with Dementia needs to feel safe, valued, and loved.

In conclusion, as you embark on this journey, anticipate that there will be good days and bad. Bear in mind that brain cells are being altered on a microscopic level, resulting in cognitive changes in thinking, behavior, movement, and more. Avoid blaming the person or taking their actions and words personally going forward. Remember, this is not a race, but a journey.

Thank you for joining me, and I hope you found it enlightening and instructive. I wish you all the wellness in the world.