Interaction tips for individuals with specific types of dementia.
Dementia can be confusing for a lot of people. I always hear things like: “It’s Alzheimer’s but not dementia.” Or “Their short term and long term memory are great so it isn’t dementia.” There is a lot of information out there that can create confusion. Also, most people don’t seek information about dementia until they are personally impacted. When you start looking for information, there are different techniques for interacting with someone with dementia but not all techniques are appropriate for each person. You have to consider the person’s type of dementia, personal history, symptoms, and personality. The first thing to understand is what dementia is, in simplistic terms.
Dementia is an overall term for progressive diseases and conditions characterized by a decline in memory, language, problem solving and other thinking skills that affect a person’s ability to perform everyday activities. In other words, dementia starts off as pretty mild but continues to worsen over time. As it worsens, we see more symptoms but a person may not show all of the symptoms initially. General symptoms of dementia include:
- Judgment and Reasoning
- Impaired Learning
- Sense of time and place
- Physical Ability
- Circadian Rhythm
Some of the common types of dementia we often hear about are:
- Alzheimer’s, Disease
- Frontotemporal Dementia
- Lewy Body Dementia
- Vascular Dementia
Alzheimer’s is the one we usually hear about and this one shows up with the memory loss. This is why so many people think that you must have memory loss if you have dementia. Alzheimer’s is easy to hide in the early stages so a lot of close family members will miss it. Sometimes, even cognitive assessments do not catch it. So it is important to receive cognitive assessments from the right professionals.
- Short term memory loss
- Admitting it early on
- Hiding it
- Using humor
- Losing or misplacing things
- Forgetting familiar names/words
- May be well oriented at first
- OK in social situations
- Difficulty in chaotic situations
- Skipping steps
- Attempts to hide memory loss
Frontotemporal is something I usually compare to being drunk because it impairs the same part of the brain. Usually you’ll see changes in speech and/or mood and behavior but can also include symptoms like: poor balance and over eating. It may make sense to compare it to being drunk, but for someone with FTD, the buzz doesn’t wear off.
- Loss of sympathy or empathy
- Difficulty with organization
- Lack of inhibition
- Speech difficulties
- Issues with balance
- Inappropriate behavior
- Poor judgement
- Mood changes
- Compulsive behavior
Lewy Body Dementia
Lewy Body Dementia usually presents with hallucinations and delusions as well as issues with attention which is why people tend to think it’s Alzheimer’s. Having trouble remembering due to lack of paying attention is different than forgetting because that part of the brain isn’t working. They tend to tell a story and can commonly be centered around children or small animals.
- Delusions and hallucinations
- Difficulties in attention and alertness
- Acting out dreams during sleep (REM Sleep Disorder)
- Some movement difficulties
- “Freeze” or get stuck as they’re moving around
- Urinary urgency and incontinence
Vascular dementia is caused by damage to the vessels that supply blood to your brain. Usually by strokes or brain damage that occurred in other ways. The symptoms may vary depending on the part of the brain that is damaged. But may usually present with:
- Difficulties with problem-solving
- Slowed thinking
Other medical conditions
Sometimes, there are other ailments that may look like dementia. So it is important to speak with a doctor if you notice any symptoms that are out of the ordinary. Some other medical causes may include:
- Infections and immune disorders
- Metabolic problems and endocrine abnormalities
- Nutritional deficiencies
- Medication side effects
- Subdural hematomas
- Brain tumors
- Normal-pressure hydrocephalus
Stages of dementia
Different scales classify the stages of dementia. One that I like for describing loss is the FAST scale:
Stage 1: Normal functioning with no noticeable decline.
Stage 2: The person may feel like they are experiencing some decline.
Stage 3: Early disease which may show effects in demanding situations.
Stage 4: Mild disease, in which the person requires some assistance with complicated tasks.
Stage 5: Moderate disease, in which the person requires some assistance with many activities of daily living.
Stage 6: Moderately-severe disease where the person requires full assistance with activities of daily living. They may experience incontinence during this stage.
Stage 7: Severe disease which removes the ability to speak, walk, smile, sit, and even hold one’s head up.
However, I prefer to see the glass half full, so my favorite scale is one that describes abilities. Teepa Snow’s GEMS. Instead of reiterating what has already been written, save this link to go back and review the 6 GEMS. This is a great explanation.
The amygdala is an important part of the brain that can stay active until the very end of dementia. It is the part of the brain responsible for the fight, flight, or freeze response. We use this part of the brain to create emotional connections. When you hear a song come on and it reminds you of your ex boyfriend and you want to turn it off fast because now you’re angry? That’s your amygdala!
If a person with dementia has a strong negative or positive reaction to someone or something, they may never forget that. While they may not be able to tell you why, they’ll be upset. This can be newly formed or from a previous experience.
I have had clients become violent with some caregivers and not others and upon investigation, the caregiver they were violent with was not as kind and patient as the ones they were gentle with. Sometimes, a caregiver may remind a person of someone from their past. I had another client who could not stand Anderson Cooper. She would watch any type of news (Fox, CNN, Entertainment Tonight, etc.) but when Anderson Cooper flashed on the TV she became extremely upset. It is likely he looked like someone from her past and the amygdala acted.
Other (More Important) Factors
I know I just gave you lots of information about the different types of dementia and you may be trying to self-diagnose. I want you to forget everything I wrote and only remember this: dementia does not mean memory loss and that there are different types of dementia. Another problem I see is that people get a diagnosis of a specific type of dementia and they try to fit the person into that box and that treatment plan. Knowing the type of dementia can be important mainly because we know more about their symptoms. However, by learning about the person, observing, and assessing their symptoms and how they manifest for that individual, we can create a more effective treatment plan. You should consider the following:
- Mental illness
- Family dynamics
- Personal history
There are some common techniques when it comes to working with people with dementia and this is where knowing the person and their individual symptoms is extremely important or we could use the wrong approach.
There are so many different forms of communication, but 93% of communication is non-verbal. The following tips will help with your non-verbal and verbal communication when interacting with someone with dementia.
Approach from the front
A person with dementia may not have their peripheral vision, which is more well-known, but did you also know they may not be able to see directly beneath them without adjusting their head? So when you put your hand on their lap, they may jump because they didn’t see it coming. Be aware of this.
Eye contact and 90-second rule
Making eye contact is important. This is going to help you to keep their focus. The 90-second rule will help with this as well. A person with dementia may need up to 90 seconds to process and respond to what you’re saying. A slight click of the pen or a shuffling of papers can break this 90 seconds. I have only needed as much as 17 seconds, but you may need to allow for more.
Speak slowly and enunciate
Speak slowly and enunciate. In addition to allowing them time to respond, you need to slow it down on your end. We’re always in a rush. If you have an accent, you’ll have to speak especially slow and really enunciate those words so you can be understood.
Pitch not volume
When someone says “I can’t hear you” what is the first thing you do? Speak louder! Well, hearing loss due to age is usually a challenge with pitch rather than volume. Try lowering your pitch so the person can hear you better rather than raising your voice.
Monitor facial expressions and body language
You have heard of the expression “she wears her heart on her sleeve.” Well, I am the type of person who wears my thoughts on my face. I have to pay special attention to not do this. If I do, my confusion may show as I am trying to figure out what someone with dementia is trying to tell me. This can only frustrate them more and we want to avoid that. Your expressions should match their emotion. If someone is upset and we immediately start speaking in an upbeat voice, the person could become agitated or feel invalidated. Be aware of that.
- Joining their reality
This refers to acknowledging and affirming a person’s thoughts, feelings, needs, or wants while relating to how they are feeling. This should always be used with another technique. As a matter of fact, all of these techniques are used together back and forth in no particular order until you’ve found the right way to help the person with dementia.
This is usually used when there is an undesirable behavior occurring. It acts to shift the person’s the focus, location, or energy. It is great to use this in combination with validation, definitely before and usually after. The goal here is to use positive communication to help the person into something that brings them more joy. The mistake I see? “Here come watch a movie.” and then they’re just left there.
Joining their reality
This is not to be confused with lying. This is about meeting the person where they’re at. For instance, if someone with dementia says they are having a birthday party later, we will agree with this. The best thing you can do is ask questions about the birthday party or whatever reality they’re expressing. You can learn more about them and improv in the moment to comfort them.
This has to be discussed. Yes, some people will say “I’m not going to teach you not to lie.” However, there are so many people out there that are still teaching “therapeutic lies” so I would be doing you a disservice to not help you understand why lying can be detrimental.
We get into trouble when we start to lie. Back to the example of the birthday party, if we were to say “I know you’re having a birthday party. Your mother arranged it and she is going to bring your father too!” and if that isn’t where the person is in their reality at this exact moment, they could become angered or distressed. As an alternative to lying, I suggest asking questions to gauge where the person is at and allow you to join their reality more effectively.
When they start to tell me about the lies they’ve been telling, I offer alternatives while explaining the dangers of lying, especially on the amygdala. Rather than trying to avoid lying all together, start implementing some other approaches.
This can include a lot of changes from the lighting, temperature, sound, other people in the room, the smells, etc. Sometimes we can use redirection to solve an environmental problem but other times, we need to implement a long-term change to the environment.
Medication is another common technique and some will use it as the first. Keep in mind that this should always be done under close care of a doctor and I recommend a psychiatrist that specializes in working with older adults. It is important to use some of the other techniques discussed while also trying medication. Close monitoring should occur so that we don’t assume a side effect (tiredness) is indication that the medication is working. We also do not want to decrease someone’s quality of life due to side effects of medication.
Using the Right Technique
How can you figure out what technique is the best to use? Well, it takes time and practice. I always tell people I wish I could come in and “bippity boppity boop” and solve the problem. Usually, I use a behavioral log for several days to determine the problem(s) and begin devising a plan. I use the 5 D’s:
- Deescalate: this is where validation and redirection may come in handy. You want to immediately reduce the behavior.
- Define/Describe: Who, what, when, why, where, and how? This is where I use the behavioral log to fill in all of this information. What happened before and after the behavior occurred?
- Decode: Reviewing the behavioral log, what was happening that may have caused the behavior. I have a lot of great colleagues that I can collaborate with on this. I recommend you do the same, even if it is a friend or family members.
- Devise: This is where we come up with the plan to prevent or manage the behavior as it occurs. You’ll want to continue using the behavioral log so you have information for the next step.
- Determine: Did it work? If the interventions you devised worked, keep going. Try it with more people. If not, maybe it was the tone of voice, time of day, the word used, etc. Keep trying by starting back at step 1.
Dementia can be challenging but it is also full of a lot of great moments. You are exercising your brain by trying to solve problems and learning more everyday. It can become stressful and it is OK to ask for support. Trovato can help, support groups can help, and other online and print resources can be helpful too. Remember to always consider the person before implementing any techniques.