Communicating with Dementia
Hi everyone! It's Dr. Dana, founder and executive director of Home and Happy. I recently had the pleasure of virtually chatting with an amazing woman, LeAnn Specht. I found LeAnn through her posts on Tik Tok where she shares valuable tips and insights into her experince as a care partner with her husband Jeff. LeAnn and her husband reside in Colorado and she has over 23,000 followers! Jeff began to experince memory changes about 7 years ago and shortly after, was diagnosed with early onset Alzheimer's disease. We discussed many different things in regards to dementia and the struggles it brings, but we mainly focused on how she changed her way of communication to improve their everyday lives.
LeAnn and I discussed their early difficulties and frustrations with communication. Their frustrations were shared in the early days while he began to struggle with remembering simple things and she would become frustrated when he demonstrated more difficulty understanding certain language. LeAnn recalled, while driving in Colorado, Jeff was looking out the window and stated " Look at the Ocean." At the time, LeAnn replied by correcting Jeff and stating that they were in Colorado and that it was not possible it was the ocean. This lead to a circular conversation and lots of frustration on both sides. This was one example of many frustrating conversations during the early-mid stages. It was around this time that LeAnn began to complete more in depth research regarding communicating techniques. She came across a website called Contented Dementia Trust, which was full of valuable content. LeAnn discovered the SPECAL method on this website and states it has made a significant difference in her ability to communicate and to decrease frustrations on both sides, in their daily lives.
So what exactly is the SPECAL method? I had never heard about it before speaking with LeAnn but, after performing more research realized that I had indeed learned these techniques in PT school but never knew it had a specific name or method.
It consists of 3 golden rules:
Don't ask direct questions
Listen to the expert- the one with dementia- and learn from them
You may now be thinking, " But, don't I have to ask direct questions?" , or maybe you have a concern about lying to your loved one? Let's talk about it a little more...
Don't ask direct questions
We ask and receive direct questions many times a day. "Do you want to eat that?", "Do you need this now?", "How much longer do you need?". While these can be simple questions for us, for someone with dementia they can be very overwhelming. As we know, people who have dementia can have difficulty processing words and the environment they are in. So, when you ask a direct question not only do they have to process the question, but it may make them more aware of their environment which can also cause confusion. Imagine you two are sitting on the couch and you ask them a question like "When do you want to eat?" In their mind, they may be 20 years younger and are out at dinner on their Caribbean vacation. Your direct question causes their brain to try and refocus to the "now" and either they won't be able to understand your question based on their context , or if they do make sense of it, it may bring on confusion and distress as they become more aware of their surroundings. So how can you avoid this? Simply, just stop asking questions. Make statements like " We are going to be eating a Turkey sandwich in half an hour." Their response may vary but another important thing LeAnn and I talked about is being flexible with your plans. She uses the saying "meet them where they are at" and stresses the importance of adapting your plans often.
Listen to the expert
A good example for this rule is the conversation LeAnn had with Jeff when they were driving in the car mentioned earlier. The interaction previously mentioned was before LeAnn had researched and learned more about the SPECAL method. Later in our conversation, she reflected back to the example of Jeff looking out the window while driving in Colorado and talked about the ocean outside his window. LeAnn said if Jeff made that statement today, she would listen to him and meet him where he was. So instead of LeAnn correcting Jeff, she would agree with him and say something like "Yes, isn't it beautiful?" Listening to the person with dementia is going to help you understand where they are mentally in the moment and rather than disrupting that place by disagreeing or asking them questions, you need to be able to go into that place with them.
Another point to listening to the expert, is to be flexible with your schedule and understand that things may not go as planned. Even if you have a shower day planned or a specific time to eat, you must listen to them. If you are prepping them for a shower and they tell you they do not want to take a shower or show disinterest, listen to them. Know that they are not in the headspace to do that in the moment and while it can be frustrating for you, you need to be able to change your plans so that they don't become distressed. Now, there is of course a limit to this for safety and health reasonings that can be discussed at a later time.
A person with dementia is usually pulling their memories from a time before their disease. Therefore, a lot of their facts or information is most likely going to be wrong or outdated. Imagine it is the year 1990 and some person starts to talk to you about a fully touch screen phone that takes pictures, videos and connects to the internet, oh and it all fits in your pocket. That is what it is like when you begin to correct a person with dementia. It will cause them distress and confusion. Because, in their head it is 1990 where cell phones were bigger than the size of your head and on a good day would make a phone call. As LeAnn always says you need to meet them where they are at. In these moments, the best thing to do is to agree and move on.
The SPECAL method is a great tool that breaks down the most difficult areas of communication with this population. But, I think LeAnn's mantra of "meeting them where they are at" is the perfect synopsis for the best communication tool with people who have dementia.
LeAnn and I did also heavily discuss the use of music since Jeff's diagnosis. This is something that is very evident within her Tik Tok videos and something Jeff appears to respond very well to. LeAnn stated music has also been a constant in Jeff's life and loves it. She said his go to is some classic rock but will listen to almost anything live. LeAnn says she will use music to help him get out of bed in the morning, for entertainment, relaxation or sometimes as a motivator to do a task like showering. LeAnn also makes sure live music is still a constant for Jeff by taking him to concerts or just a live band at their local bar.
I hope you have found this information as helpful as I did while discussing it with LeAnn. She really is a fantastic partner and person. Please give her a follow if you are on Tik Tok, @alzheimerstips, and if you don't have one be sure to follow us because we do share her videos often! Thank you again to LeAnn for your time and conversation. Please feel free to comment any suggestions or advice you would like to add or head on over to our forums to chat more!