In 2015, a significant amount of research was dedicated to better understanding what I believe is the least understood of the major types of dementia. That type of dementia is Lewy Body dementia.
This post will will begin to summarize the findings of this latest research in way that is both accessible and will hopefully better educate us as caregivers of loved ones with Lewy Body dementia. Continue reading →
In this post, we’re going to discuss how temperament factors into these neurological diseases and how we as caregivers can respond effectively and lovingly to provide balance and still meet the basic needs that our loved ones’ temperaments require.
For the purpose of this discussion, we will look at the big picture of temperaments and the two most dominant categories that each of us falls into: extraversion and introversion.
There are 16 distinct variations of these two temperaments (eight in extraversion and eight in introversion). (You can take free temperament test online to see which variation your temperament is.)
All of us fall into one of those 16 variations (for example, I have always and continue to test out as an INTJ). How we fall into them is what makes each of us unique (for example, I range between 92% and 100% for introversion every time I take the test and I suspect that variation depends on the amount of recharging solitude I have immediately had when I take the tests).
Temperaments are, in my view, a function of genetics. In other words, it’s hardwired in us before birth by DNA (nature).
Unlike other things about humans that are more fluid and can change over time, there is little to no effect from external influences that alters our temperaments.
Extroverts in a family that is more introverted don’t become more introverted, no matter how much pressure, spoken or unspoken, is applied to make them less social and more quiet.
By the same token, introverts born into a family (and into the Western world that places a very high value on extraversion) that is more extroverted don’t become more extroverted.
If anything, extroverts and introverts become even more extroverted or introverted because of the pressure applied because it conflicts with who they are at a very core level.
But equally important is whether we as caregivers are introverts or extroverts and how we may need to step outside our natural dominant temperament characteristic to ensure the needs of our loved ones are met.
Extroverts with dementias and Alzheimer’s Disease will continue to crave being social and being with and around people on a regular basis. However, because as neurological changes progress, it is not uncommon to see increased conflicts in social situations (arguing, verbal fighting, anger, etc.) or exaggerated – and sometimes inappropriate – efforts to be the center of attention.
Introverts with dementias and Alzheimer’s Disease will become even more introverted as neurological damage progresses. They will tend to isolate themselves as completely as possible, become completely withdrawn, even from loved ones, and often become completely uncommunicative before they actually lose the ability to speak and communicate.
Neither of these scenarios is good for our loved ones, so it is incumbent upon us as caregivers to try to achieve and maintain as much of a healthy balance for them to meet their needs as is feasible and possible.
In my opinion, this is one of the hardest areas to negotiate effectively and well, and it also requires the most finesse and empathy.
This is especially true if our loved ones and we have different temperaments.
My mom and I were good examples of almost diametrically opposite temperaments. Mama was an ENFP and I am an INTJ. We both had intuition (N) in common, but we were total opposites in every other way, temperamentally.
From day one of our lives together, these differences in our temperaments were a constant source of clashes and contention between us, especially in the early years. Mama would push me continually to be more extroverted and I would push back equally or more tenaciously against it.
Mama would cajole, threaten (and usually follow through because punishment was a better option for me than doing something I could not abide the thought of doing), plead, try to reason, and try to entice me to be more extroverted in a social and a public sense. It never made sense to her that it was agony for me and it literally drained me of all energy and patience.
Ironically, neither my mom and dad (who was also more extroverted than I was, but was an INFJ, so he understood me somewhat better) stopped me at home when I would go off by myself to be by myself, just to get away from everyone else when I was younger and to read, draw, or write when I was older.
But they were both concerned about my lack of desire and enthusiasm to engage in group social activities and to spend a lot of time with other people doing “fun” things. I’m sure there were many bedtime discussions between my parents about me and whether this was normal or was cause for concern.
But eventually, we all sort of adapted (Mama never completely quit trying to push me toward a more extroverted temperament, but when I would finally have a meltdown of yelling and tears in frustration – and sometimes from too little solitude too often – Daddy would intervene and persuade Mama to give me some breathing room and let me regroup, which always worked) and we figured out how to live with and love each other in spite of our differences.
As Mama’s cognitive impairment worsened over the last eight years of her life, she continued to be social and seek social activities and environments. However, as the neurological damage deepened with her, the level and number of conflicts with other people increased.
In the year and a half before Mama was diagnosed with mid-to-late stage vascular dementia and Alzheimer’s Disease, Mama’s relationships with everybody – including me – were much more contentious and much less harmonious.
On a daily basis, Mama would tell me about some dust-up with somebody. Mama had always been a bit on the scrappy side – not in a negative way, but she wasn’t afraid to take people on if they were wrong or she was protecting herself or her loved ones – but she also, because of her intuition, was able to see even the orniest of people objectively and still manage to interact in a positive way, for the most part, with them.
However, as Mama’s paranoia increased, her objectivity decreased and she began to see just about everyone in a more sinister light and as potential enemies. As a result, her social interactions, which she craved, became increasingly tense and hostile.
Just before Mama’s diagnoses and the medications that would balance out the most extreme aspects of the behaviors associated with dementias, Mama exhibited the behavior of an introvert like me.
With a profound hearing loss, Mama depended on hearing aids to connect with the world. Mama would always put her hearing aids on very soon after waking up in the morning so she didn’t miss anything.
In the few months before the inevitable crash that landed her in a geriatric psychiatric hospital, Mama often wouldn’t put her hearing aids in until late in the morning or early in the afternoon.
Mama also started isolating herself, spending the majority of the day in her apartment alone except for the time I spent with her each day.
As I went through her desk and computer when I was trying to make sense of where we were and what I needed to do when she hospitalized, I found that she’d spent a lot of time trying to write, either longhand or on the computer, and as I went through everything, I could see evidence everywhere of steep neurological decline.
It alarmed me to see the rapid progression over a few short months. I can only imagine how much more it must have frightened Mama because she didn’t know what was happening and yet she was aware that everything seemed to be quickly slipping away.
The right combination of medications brought Mama back to her true temperament and it was a relief to me and, I suspect, a relief to her as well.
She was once again involved in a lot of social activities during the day and not only did Mama thoroughly enjoy them, but other people thoroughly enjoyed her (she’d always been the life of the party and a welcome addition to any social gathering).
I made sure to encourage as much social interaction as Mama was up to and I made sure that whatever she needed to be a part of those activities she had. I would often join her in some of them, in spite of my natural aversion to that, because I knew Mama liked having me there with her and I knew that my being there made Mama feel safe.
When Mama came home to live with me, I had to continue to go outside my comfort zone to make sure she had enough social activity and interaction to thrive with her temperament. And, while it was hard at times on me, I never regretted doing that for her.
As the end of Mama’s life was drawing near and she began not knowing who I was on a regular basis and was often unable to recognize people she had known for a long time, I began to cocoon us.
The reasons were because it bothered Mama when she didn’t know people and, because they were strangers, Mama would get fearful (except for me – even when she didn’t know me, she wasn’t afraid of me and she felt safe with me).
So I began keeping the number of people with whom Mama and I interacted small and consistent so that the odds were good that Mama would remember them and so that she would not be scared.
To this day, I struggle with whether I did the right thing by Mama by doing this.
Logically, I know it was the absolute right decision because I didn’t want Mama to feel unsafe or scared.
But emotionally I question whether I should have taken the chance that Mama might have a good day and be glad to see longtime friends.
I still don’t know the answer. That will be just one more of those lingering questions that I’ll probably revisit with no resolution until the day I die.
In the first post in the series, we discussed how our loved ones’ life experiences factor into a lot of the behaviors we see as they travel the road through dementias and Alzheimer’s Disease.
In this post, we’ll take a look at how personality, quirks, foibles, and flaws thread their way through a lot of the behaviors we see in our loved ones with dementias and Alzheimer’s Disease.
It’s important to understand this and to be able to recognize this because it can help us respond both more accurately and more compassionately and gently to the often baffling and frustrating behaviors that emerge as these neurological diseases progress. In other words, it gives us a context to both understand the behaviors and to minimize or eliminate, in some cases, the effects of the behaviors.
I group personality, quirks, foibles and flaws together because they’re so intertwined in what makes each of us the unique person that we are that to separate them would be like looking at a single piece of a puzzle instead of the whole puzzle.
They also represent both the positive and the negative, the humorous and not-so-humorous, the normal and the eccentric (spoiler alert: there is not a human being on the planet who doesn’t have eccentricities – some of us just hide them better than others), the sane and the not-so-sane aspects that make each of us human and each of us unique.
All of these get exaggerated in one way or another with dementias and Alzheimer’s Disease.
Sometimes that’s okay. Sometimes that’s not.
If an endearing aspect of these gets more endearing, we tend not to appreciate it as much as we should.
However, if an annoying or obnoxious aspect of these gets more annoying or more obnoxious, we as caregivers will, at times, wonder if we will survive the journey we’re sharing with our loved ones intact and in one piece mentally and emotionally.
Personality is generally defined as the unique way each of us consistently thinks, feels, and behaves throughout the course of our lives.
Some aspects of our personalities are dynamic to some degree, changing as we mature and age or because the things we experience and encounter through the course of our lives, but the core of our personalities – the nuts and bolts of who we are at a stripped-down level – tend to be static.
Some of this core personality is genetic – nature – and some of it is early (first five years) environment/experience – nuture.
And this is the part that identifies us uniquely throughout our lives, because it is always there regardless of where we are, what what we’re doing, or who we are with.
Some of our core personality traits can be very good. If we tend to altruistic, optimistic, and malleable, those traits show up early and last even through the journey of dementias and Alzheimer’s Disease.
But even these positive personality traits can be a liability as neurological decline progresses.
If our loved ones tend to be generous and always doing for and giving to others, they very often might give away a lot of money or very valuable things to other people without understanding the financial hardship these losses may incur – and which are often unrectifiable – which may affect their own care.
Additionally, these kind of traits can make our loved ones easy prey for unscrupulous people to take advantage of them and perhaps wipe them out financially.
Other of our core personality traits may present challenges to those around us all our lives. If we tend to be angry, stubborn, and self-centered, for example, these traits also get worse with the progression of dementias and Alzheimer’s Disease.
Unfortunately, it seems that most of us humans – and I will include myself in this (I’ve always said that if I ever develop dementia, they just need to put me down right after the diagnosis because I will be a gazillion times worse than any of the worst horror stories I have heard along the way about the negative side of dementia, and I don’t want anybody to have to deal with that) – have more negative core personality traits than we do positive.
When we have our full cognitive abilities, we have the ability – if we’re aware of these negative core traits and we don’t want them to have a detrimental impact on our relationships – to mute or override them in our interactions with other people.
However, once cognitive decline has progressed far enough to be seen behaviorally, the filters that we used to mute/override these negative core personality traits disappear as does the ability to know that we need to moderate them. And all bets are off.
Some of our core personality traits are so much a part of us that they are us. In other words, we can’t step back objectively and in clarity and self-awareness see them and remove or change them.
This is, in my opinion, just default programming (it may genetic or environmental or both), but no matter how much we try – and some people don’t try (I am always trying to consciously avoid my own, but a lot of mine is already in play before I even know that I’m supposed to be avoiding it – it is one of the things about myself that drives me crazy) because they don’t know and/or they don’t care – it’s there anyway.
These things get exaggerated with the progression of dementias and Alzheimer’s Disease and they can be the some of the most taxing things we as caregivers can deal with because we don’t have the ability to neutralize them in our loved ones with logic, reason, and rational thinking.
I have a very good friend whose father has vascular dementia. He is very demanding, always right, often the misunderstood victim, as obstinate as the day is long, and fighting against anything that takes away any of his independence.
My friend’s dad lost his driver’s license over two years ago when he was pulled over on the interstate for driving against traffic during the day. Fortunately, the police got him off the road before anything bad happened, but my friend’s dad has obsessed angrily about losing his license and not being able to drive since then.
His obsession with being allowed to drive ranges from conspiracy theories – the police, doctors, and his daughter have conspired unjustly against him to keep him from driving – to getting a new glasses prescription (“now they’ll give my license back”) to the humorously absurd (“everybody drives the wrong way down the interstate at least once”).
Additionally, because not being able to drive has made him more dependent on others, including his only daughter (who has a large and dependent family of her own), he expects everyone to drop everything they’re doing and take him where he wants to go when he wants to go and gets very angry if they can’t or won’t.
As his daughter and I were talking about his behavior, she said that her dad had always been narcissistic and demanding, even before any signs of cognitive decline. The world had always revolved around him so dementia has made this aspect of his core personality even worse as he loses ground neurologically.
Foibles, quirks, and flaws are, in many ways, extensions of personality.
The things that make us just slightly off-kilter (quirks) and perhaps are even “cute” or teasingly tolerated can really go off the rails quickly as dementias progress.
Foibles, which are inherent minor weaknesses, like the tendency to laugh at inappropriate times or to chatter incessantly, also become exaggerated during the journey through dementias and Alzheimer’s Disease. These also can be real testing points of our patience as caregivers because there are no boundaries around them for our loved ones as there were when there was no cognitive impairment.
And flaws (examples would be things like argumentativeness, impatience, quick temperedness, aggression, etc.) also become more exaggerated as the journey through dementias and Alzheimer’s disease progresses and there are fewer and fewer inherent abilities for our loved ones to use to practice restraint.
Flaws are perhaps the most scary and the most dangerous aspects of personality that we as caregivers may have to deal with. Because the executive functions of reason and rational thinking are absent in our loved ones, so too is the absence of the understanding of consequences of actions (behavior), which is a restraint in normal cognitive functioning.
Therefore, for example, if our loved one has the flaw of being quick-tempered (which has the emotional component of lashing out either physically or verbally or both if not restrained), there is real possibility of physical injury or death (especially if anything that could be used as a weapon is within reach) by our loved one because they are only able to be in the moment and cannot foresee or even understand the long-term consequences of their actions.
This is why having the insight into the personalities, quirks, foibles, and flaws of our loved ones and how those are manifested in their behavior is so important for us as caregivers.
We can mitigate the possibilities of really tragic outcomes in the worst-case scenarios and we can also come up with effective strategies for neutralizing – it will be temporary at best and we’ll have to do it over and over (this can be a very frustrating part for us) – the behaviors in the moment to make them less disruptive for both our loved ones and for those of us around them.