… It's what you believe it is.
*Resident names and any identifying details have been changed for privacy.
June 12, 2020
Dementia affects how people interpret reality – but what is "reality", anyway?
Ask several people about the same event and each will describe it differently - sometimes drastically so. Which account is "real"?
Understanding how our brains perceive reality – and how dementia affects this process – is key to understanding how to work well with this population.
There's a lot that goes into this. I'll try to just break it down to the basics and then provide lots of links to more information.
The brain creates the big picture by fitting the pieces together.
There are many "pieces" in the reality puzzle, including:
What you see
What you hear
What you smell or taste
What you feel physically
What you feel emotionally
What you think
What you remember
What you believe
What you have learned
What you expect
What you have experienced in the past
Where you direct your attention
All of these variables contribute to how you uniquely experience - and interact with - reality.
Sometimes it alters them quickly in a short period of time, which can be especially hard to decipher - or live with.
Sometimes large parts of life are forgotten.
Sometimes they "guess" at what should be there. Once in a while they get relatively close. Other times - not so much.
Sometimes they correct thin spots by smudging the edges around them, so to speak. This completes the big picture at a glance, but some of the details are vague and fuzzy.
Our brains choose the details they think make the most sense in the big picture.
They may pull details from the memory bank, or from somewhere else entirely, such as a television show. Sometimes it seems like they come from out of nowhere.
This is called confabulation.
Confabulation is completely subconscious – we aren't aware we are doing it. It isn't lying because we aren't trying to deceive anyone. We fully believe it ourselves.
Our confabulated reality is indistinguishable to us from "actual" reality.
Most of us confabulate to some extent whether we have dementia or not... although those of us with dementia do tend to confabulate more often.
Generally speaking, dementia can significantly impact a brain's ability to make sense of one's surroundings.
Dementia often affects how the brain processes or interprets sensory information, including what it sees, hears, smells or tastes. This sometimes leads to the misidentification of objects, sounds or people.
Hallucinations are seeing or hearing (or sometimes smelling, tasting or feeling) things that aren't there. These tend to be common with some forms of dementia.
Delusions are firmly held false beliefs that cannot be swayed even when presented with evidence to the contrary.
Dementia affects our psychological and emotional states in many profound ways.
Dementia often affects short term memory more than long term. Memories or information from the past may be more accessible and seem more vivid or "real".
Dementia frequently affects concentration and shortens attention span.
This short video by the National Institute of Aging gives a great overview on how Alzheimer's Disease affects the brain.
Take A Walk Through Dementia, courtesy of Alzheimer's Research UK.
You'll be privy to a first hand peek at just how challenging and exhausting early stage dementia can render everyday situations.
Open with the YouTube app for a full 360 experience on mobile. For a virtual reality experience download the free Google Cardboard app from awalkthroughdementia.org.
Attention is somewhat akin to a spotlight. It can be focused on only one thing at a time.
Inattentional blindness is a well-known phenomenon in the psychology community. Basically: it's surprisingly easy to miss what you aren't expecting.
Try it for yourself. How many basketball passes do you count in the video?
Reality orientation refers to correcting someone who is disoriented – confused about a person, date, time, place or situation.
At one point in time, it was considered important to always reorient people with dementia. However, concerns about this practice grew.
Often reality orientation did not work, instead making things so much worse!
In her reality she was a self-sufficient young woman who showered routinely.
In the reality of the nursing home staff however, she was a fiercely independent woman who hoarded food scraps in her panty drawer, laid urine-soaked paper towels out to dry and showered, maybe, once a month.
I could get her to shower sometimes, if the planets aligned just so.
One evening I was training a new male aide. Isabelle was overdue for a shower, as usual. I doubted she would comply today, since not only were there two of us, but one of us was a man.
Yep. She was horrified and offended that a "man and his wife" wanted to give her a shower, and she communicated that fact to us effectively.
The nurse that day was new to our hall. For some reason, she was bound and determined that Isabelle was not going to skip her shower. She was an old military nurse who believed wholeheartedly in the "direct" approach, and I think maybe she didn't believe in "refusals".
The nurse told us in no uncertain terms that Isabelle would indeed be receiving her shower. She marched down the hall, determined to show us how it's done. The trainee and I followed along as ordered.
The nurse told Isabelle that she hadn't had a shower in 21 days, that she has an odor and that she needed to take a shower now.
Isabelle immediately started screaming. "Get OUT! I only arrived here this afternoon! If this is how you treat people here then, well, then I'm leaving!"
The nurse explained to her that she had been living here for over ten years.
"Liar!" Isabelle shrieked, "Liar! I'm calling my father to get me out of here!"
The trainee and I waited around for a few minutes before leaving to help someone else. The nurse and Isabelle continued at each other for who knows how long.
Isabelle did not get a shower that day.
As a culture, as we learned better, then we did better. We've come a long way in the last 25 years.
The short answer: when it works.
If someone is confused about something simple; maybe the time or their room, go ahead and reorient (remind) them. If they accept it readily – great!
However, if they don't accept it don't push it. Drop the subject.
If necessary, beg their pardon - you must have been mistaken. (Follow up with "Let me go check on that" for a quick pass to get out of there, regroup and try a new approach.)
Excerpt from Hilltop Heights Home for the Memory Impaired:
Done with 'knack', one can do what needs to be done without traumatizing the person.
Example 1: A woman is worried about her late husband. Rather than reminding her that he is dead, a male caregiver calls her on the phone, claiming to be her husband. He reassures her that he will be home soon, and she immediately relaxes.
Example 2: A man has an important doctor's appointment, but he has a history of becoming very anxious and refusing to see the doctor when told ahead of time. This time, his caregiver simply invites him out to lunch. They conveniently find them in the neighborhood when the caregiver suddenly 'remembers' she needs to stop by the office for some reason. Once inside the office, it is easier to talk him into the appointment. He also has to deal with the anxiety for much less time. The point of reality sculpting is to preserve the person's sense of self and emotional well being.
"I have to get home... Mother is worried about me!"
"I have to pick the kids up from school."
"It's time for me to go to work."
If your friend is disoriented, you've probably heard something like this. You've tried reorienting your friend to your reality, but it only seems to aggravate the situation. What can you do to help?
Your friend is becoming anxious because he wants to go home; Mother is worried about him. When you were a child, how did you feel when Mother was worried about you? Did you want to get home to ease her mind (or avoid her wrath)? Your friend does.
Would you feel better if I told you that your mother had died twenty years ago? Keep in mind that you're only ten years old. Do you think I am lying to you? Do you wonder why? Do you think I have my facts mixed up? Maybe I have you confused with someone else. At any rate, you don't believe me, and you don't feel any better.
So, what would help you feel better? What if I told you your mother had called and said you could have dinner here? That doesn't sound so bad.
What if Mother called you herself and told you to spend the night here? That certainly would help. Of course, Mother can't really call; but then again, she doesn't really need to. Your friend just needs to believe that she is calling.
In my experience, almost any kind female voice can be 'Mother' to someone in this stage of the disease.
It is amazing what demented people will believe if they hear it over the phone. The telephone is a wonderful tool for reality sculpting.
Sometimes reminding your friend that the kids are grown will be enough to relieve her anxiety about picking them up from school. However, if she doesn't believe you, let it go. You need to enter her reality to resolve this. She needs to feel as if the situation has been resolved - the kids are safe and her job is done. The telephone can work wonders here.
Maybe 'the school' can call to tell her the kids will be staying late today. Perhaps her 'sister' could call to say the kids are with her. The key is to make your answer believable and acceptable to your friend. You will know if it is because she will accept it and relax a bit. At this point, you can try distracting her.
Distraction is a wonderful tool. It lets you use your friend's short attention span in a positive manner. Engage her in conversation or a favorite activity. Offer her a snack, ask for her help, or do whatever else you can think of to capture her attention.
Bear in mind that if she feels strongly about something, distraction will rarely work until she believes the situation has been resolved.
If your friend's social agenda surfaces at the same time each day, you can anticipate it and act proactively. Try taking her for a long walk, or make sure she is engaged in something just before and during her difficult time.
If your friend believes it is time for work the answer could be as simple as a phone call or memo from the 'boss' granting him the day off.
It would be great, however, if you could somehow help him feel as though he did go to work, or at least accomplished something productive and meaningful.
You have an opportunity here to get creative. What does your friend feel is important? This may or may not be related to his chosen career. Can you find some housework that needs to be done - folding laundry, dusting, using a carpet sweeper? Maybe your friend is used to paperwork. Is there some filing, typing, or coupon clipping that can be done? How can you adapt chores so that your friend can be helpful?
If you can't find anything, keep in mind that the main focus here is to help your friend feel helpful. Even if you don't use the coupons, you can praise and thank him for his help. If you have to unfold washcloths outside his line of sight to give him something to fold, so be it.
The activity will use up energy as well as provide physical and mental stimulation and exercise. The repetitive motion is soothing, and the satisfaction of being helpful and productive is invaluable to the soul.
Incidentally, I've found that asking for your friend's 'help' is a wonderful practice. People with dementia don't always have many opportunities to give back or help out, and most are glad to have the chance. Even if your friend grumbles about it, notice the effect it has on his sense of self worth.
You might even find him willing to do things he otherwise wouldn't. Is your friend resistant to attending that day care respite program? Maybe he would be willing to 'volunteer' there instead.
You can make up jobs to make him feel useful, but if you create the right situation, you might find he can genuinely help you out.
Many people are understandably reluctant to tell someone with dementia something that isn't true.
Certainly one of the most important (if not THE most important) qualities in a relationship is trust.
So if you are reality sculpting, be very careful about when and how you use it. People do not feel better when they feel lied to.
Over the years the general consensus has started to lean away from saying things that aren't true, except in extreme cases. However, that doesn't mean that the full blatant truth is the best approach either. There is a lot of ground between lying and blunt reorientation.
It is important that you are comfortable with what you're saying. Not only is this a self-care issue, but the person will pick right up on how you are feeling.
Figure out what you can say that will help the person feel better without telling them something that isn't true.
One of the best ways to do this is by focusing on the feelings being expressed, rather than the exact wording. When people are looking for 'home' or 'mother', for example, they are often seeking comfort for feelings of insecurity. You can ask questions or talk about home or mother to help elicit those feelings. "What was your mother like? Was she a good cook?"
It can also help to name the feelings: "It sounds like you really miss your mom."
Think about why they might be feeling uncomfortable. Are they hurting? Tired?
It is very common to substitute the wrong word (like 'mother' for 'wife' or 'daughter'). A simple clarification using the name of the person you think he's talking about should do the trick. "Are you looking for Shirley? She should be here this afternoon."
But, especially in the later stages, it's quite likely that in his reality he is actually six years old and looking for his mother.
Think about what you would want or need in that circumstance.
If you're a lost six-year-old child, some stranger telling you that you're not six, you're 86 (and by the way, your mom is dead) wouldn't help.
So what would?
Find something to say that feels okay to you, and also to him in his current reality. Maybe something like: "I don't know where she is right now, but don't worry, I'll help you. Let's sit down and figure out what's going on… What does your mom look like? Do you know her name?"
You're not lying. You're not reorienting. You're somewhere in the murky middle, actually helping him feel better.
Sometimes you can lead a person back to present reality with the questions you ask, and that's fine. But it's okay if not too.
Wherever they are is okay, as long as they feel okay there.
Explaining to them that they are wrong is about as effective as explaining to you that you aren't really reading this right now.
If they believe it's happening it might as well be - they will act and react as if it is.
Just go with it.
The better you understand this, the more easily you can understand and help people with dementia.
Read about the myth of multitasking, and gain some interesting insight into how the brain decides where to direct attention in this NPR article by Job Hamilton.
This 4 minute read by Dr. Brooklyn Storme will give you a quick Introduction to the Neuroscience Behind Creating Your Reality.
Here's an interesting article by Will Storr on LitHub that sheds a little light on how our brains construct reality.
Check out these 10 Surprising Facts About how our Brains Work by Belle Beth Cooper.
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