Tag Archive | behavior

Insights: How Life Experiences Factor Into Dementias and Alzheimer’s Disease

Jul15

Life experiences are factors in dementias and Alzheimer's DiseaseThis post begins a series that provides us as caregivers a perspective into the behaviors of our loved ones with dementias and Alzheimer’s Disease that I’ve never seen discussed anywhere else. 

I’m a big-picture person. I believe that there are tangible connections among things for everything and everybody.

In other words, nothing is random, even if it appears that way. There’s a logic to everything and everybody. However, the only way to find the order and the logic is to back away from the immediate present and abandon the tendency to believe that it exists in a vacuum.

Nothing and nobody exists in the vacuum of a moment in time. Everything and everybody is the sum of their parts over a continuum of time.

By looking at the whole picture of our loved ones’ lives – life experience, temperament, and personality/quirks/flaws/foibles (which we all have, by the way) – we can gain insight into how those factor into the behaviors we see in their journeys through dementias and Alzheimer’s Disease.

Knowledge is power in this case. Because if we understand what factors of a lifetime are driving the behaviors we see, then we can find ways that are beneficial for us and for our loved ones to respond to those behaviors.

I will be the first to admit, from personal experience, getting our responses consistently right is not easy and, at times, because our own emotions (especially as children or grandchildren dealing with parents and grandparents where the landscape, even in the best of circumstances, is complex and complicated) are intimately involved, we will fail. We will fail miserably.

But, as with anything else in life, we have two choices after we fall flat on our faces. We can either quit in defeat or we can get up and try again with more resolve to move forward successfully.

It’s my opinion that a substantial part of the fatigue that we experience as caregivers for our loved ones with dementias and Alzheimer’s Disease is not physical, but instead emotional and mental.

And the resolve to not quit emotionally and mentally in going through this journey with our loved ones is a significant contributor to that fatigue.

Do it anyway. For them and for ourselves. Because when we stand alone at the end of this journey we will find out that we gained more than we lost.

We will know ourselves better than most of us probably really want to know ourselves.

We will find strengths that we didn’t know we had. We will be surprised at our endurance and the levels of adversity we had to persevere through.

But we will also find our weaknesses and we will see our shortcomings. A lot of these come to light in the years that follow the journey through dementias and Alzheimer’s Disease. They come to the forefront of minds slowly as we consider and reflect on the journey.

As painful as that is – and it is very painful – it is positive. Because once we see areas where we need to change, we have the opportunity to change. We have the opportunity to continue to reap the benefit of growth.

That’s why I personally advocate remembering, examining, and considering the journeys we’ve been through with our loved ones. Some people are not able to do that and that’s okay, but personally for me, it has been an unparalleled period of change and growth in my life.

Life experiences factor significantly into the behaviors of our loved ones with dementias and Alzheimer’s Disease. 

Because short-term memory is impacted more than long-term memory and the core of our perspectives on life are formed during the early years of our lives, the life experiences of the first twenty years of our loved ones lives seem to drive some of the behaviors we see.

For example, my mom’s mother died when she was three days old. Her 78-year-old grandmother and 80-year-old grandfather immediately took Mama and her dad – an absent binge drinker under stress (he disappeared for several days after his wife died while the maternal and paternal grandmothers fought over custody of his daughter) and a World War I veteran whose lungs had been permanently damaged in a mustard gas attack in France – into their lives.

Although Mama was loved, it was an unsettled start to life with constant moves and frequent absences of her father (hospitalizations at the VA hospital, drinking binges, and a few arrests for public drunkenness). 

Mama - 6 years oldWhen Mama was five, the fragile environment of love began to disintegrate.

Her grandfather, her best friend and trusty ally, died. A year later her father succumbed to pulmonary disease.

The memory that haunted her most of her life was the 30 minutes or so before her father died. He told Mama he wanted to talk with her, but she wanted to go outside and play with her cousins. Her father kissed her and said, “Go ahead.”

That was the last time Mama saw her father alive and her guilt over not knowing, because she was six years old, that he was dying and not staying with him when he wanted her to followed my mom all her life.

Shortly after her father’s death, Mama was sent away from the family she knew and loved to live with an aunt she didn’t know and who didn’t want her. For the next 12 years, Mama endured hell on earth. She was all alone in the world. She was mistreated, lied to, and stolen from.

Mama having fun with her grandkidsMama finally escaped and was able to overcome a lot of adversity to become an incredibly accomplished woman and the mother that I loved with all my heart, the wife that my dad cherished and was completely devoted to, and the friend that so many people loved and cherished.

But the road to becoming those people was strewn with a battle to overcome fear, anger, resentment, and bitterness, which Mama finally did in late middle-age. But the one thing Mama never completely overcame was her suspicion that people couldn’t be trusted and, given the opportunity, they’d take advantage of her.

When Mama’s dementias and Alzheimer’s Disease were in full bloom, those life experiences of her first 18 years were primary factors in her behaviors.

The loneliness came back. The fear came back. The anger came back. The bitterness came back. The resentment came back. In full force.

And her normal tendency toward being suspicious of everyone as a possible threat to take everything away from her blossomed into a full-throttle paranoia that I wouldn’t have believed unless I’d been the one who’d seen it and been on the receiving end of most of the time.

All of these things took me by surprise because they all came at once in high gear. I was overwhelmed and unprepared emotionally and mentally to deal with the onslaught.

At first I blamed myself. I kept wondering – and looking for – what I had done or said to trigger Mama’s behaviors. Every place I even thought there was a possibility that something I’d said or done was the trigger, I changed immediately.

But Mama’s behavior didn’t change. In fact, it got worse.

It was hard not to take it personally. There were many times when I’d walk away to defuse the situation and just sob because I didn’t know what to do and I couldn’t help Mama.

But I thought about the whys of Mama’s behavior day and night as I searched for answers and ways that I could help. And in the process, I found compassion, empathy, and patience.

Why? Because I realized my mom was that scared six-year-old little girl who had her whole life ripped apart and thought she was all alone in the world. And that six-year-old girl knew what lay ahead in the next 12 years of her life and she was determined not to let it happen this time because all of the emotions associated with that were front and center.

My understanding of how my mom’s life experiences were factors in her dementias and Alzheimer’s Disease gave me insights into why she was doing what she was doing and into ways that I could tangibly quiet her fears and soothe – not entirely – those raging emotions associated with the most disruptive time of her life.

So I urge all of us, as we’re able, to go back over our loved ones’ lives and see where the connections are, even as far back as early childhood, that factor into the behaviors we see as they walk the journey through dementias and Alzheimer’s disease.

I promise you that it will be worth it not only for us as caregivers but for our loved ones as well.

 

The Stressors of Unmet Needs, Physical Environment, and Routine in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease

Nov7

In “The Role of Stress for Our Loved Ones Suffering From Dementias and Alzheimer’s Disease,” we discussed the negative impact that stress has on everyone in terms of cognition, emotion, and behavior. We also discussed that this negative effect gets exacerbated when our loved ones with dementias and Alzheimer’s Disease experience stress.

In this post, we will look at three common areas that can be stressors for our loved ones with dementias and/or Alzheimer’s Disease and what we as caregivers can do to reduce or eliminate these sources of stress.

A source of stress for all human beings is not having our needs met. These include physical needs, spiritual needs, emotional needs, and psychological needs. Even for those of us who have no cognitive impairment, these needs are difficult, at times, to quantify and to verbalize.

For our loved ones with cognitive impairment, where thought and verbiage are tangibly disconnecting from each other, expressing needs that need to be met is even harder, if even possible. Therefore, the responsibility lies with us as caregivers to examine whether there may be needs that aren’t being met.

I strongly urge each of us as caregivers to call to conscious memory who our loved ones were before dementias and Alzheimer’s Disease took center stage. This exercise is vital in determining what needs our loved ones may have that are not being met and then finding ways to meet those needs.

So, let’s ask some questions. Was your loved one a social person who enjoyed being around people? Were faith and spiritual sustenance an important part of your loved one’s life? Was your loved one hot or cold-natured? What were your loved one’s food preferences, meal schedules, and general diet look like? Did your loved one like to exercise or not? Did your loved one like being outdoors or indoors? Did your loved one prefer a lot of light coming into the house or did your loved one prefer less light?

dementia-social-stimulationWhile this list is not exhaustive, we should be able to to see areas in which our loved ones with dementias and Alzheimer’s Disease may have unmet needs. If our loved one was always cold-natured, for example, and we keep the temperature in our homes low, then the need that needs to be met is ensuring that our loved one is warm at all times, whether that means dressing them in layers or turning up the thermostat.

Another example would be that, if our loved one was a social person who loved to be around other people a lot, he or she may be lonely or experiencing isolation as their social network disappears (this happens frequently, I believe, because of the discomfort that a lot of people experience around dementias and Alzheimer’s Disease and because communication can be difficult, so most people don’t make the effort). An easy remedy to this can be something as simple as going to sit in a bookstore, a library, or even the mall on a regular basis. Even though our loved ones may not be making one-on-one contact with all those people, we can talk with them and they can be surrounded by people and it gives the same effect.

I offer these to hopefully stimulate our creativity in safely and successfully eliminating, as far as we are able as caregivers, the unmet needs of our loved ones with dementias and/or Alzheimer’s Disease. As needs get met, there will be less depression and less apathy, which is often the result of unmet needs.

Another stressor can be the physical environment. As cognition declines, the ability to sort through complex situations to have a sense of where to go, what to do, and how to do it becomes increasingly difficult.

So let’s look at some ways that physical environment can make this even more stressful for our loved ones suffering with dementias and Alzheimer’s Disease.

Let’s take clothing (which for me, personally, has always been a challenge because of a rare aspect of color-blindness I suffer from, so I have a very limited and basic wardrobe to eliminate this as a stressor from my life). For our loved ones suffering with dementias and/or Alzheimer’s Disease, opening a closet full of clothes and shoes is a stressor. Often times, when you see someone wearing the same clothes several days in a row, it’s because the physical environment component of trying to pick clothes out of a closet is too stressful.

pjs-on-pillow-dementia-organizationThere are several ways to eliminate this as a stressor. One is to pare down the clothing to a few outfits and to put clothes that are meant to be worn with each other together on the same hanger. Another way to address this is to lay the day’s clothing out where it needs to be put on (for example, a daytime outfit hangs on the closet door – don’t forget the shoes! – and pajamas are on the pillow on the bed).

Why does this help? Beyond the obvious reason that it reduces stress and confusion, it can often also help our loved ones be more independent in personal grooming and dressing. Most dependence comes from simply not knowing what to do. If we as caregivers can eliminate the stressor of having to make complex choices, then we can also give the gift of more independence to our loved ones. 

In many ways, this is no different from what parents do with children as they grow up to make the children more independent in taking care of their own needs as much as they are able. It reduces the stress for everyone involved, and our loved ones are no different in that respect.

Other physical environment components that can be huge stressors are clutter and a lack of organization. Remember that our loved ones with dementias and/or Alzheimer’s Disease are also experiencing visuoperceptual changes. Therefore, the more clutter and lack of organization that is in our loved ones’ physical environments, the more stress from visuoperceptual issues will affect our loved ones negatively.

Practical ways to eliminate this stressor are to get rid of the clutter and get organized. Pathways need to be clear. Get rid of unnecessary and distracting knick-knacks and other items that are just taking up space (often having too many things to look at is overstimulating and creates stress). Have all living areas organized.

For example, Mama spent a lot of time in the recliner in the living room where she could read, look outside, and we could do activities together. The end table next to the chair was organized with her hearing aids (in a case), her glasses (in a case), her Bible, and a coaster with a fresh glass of water on it at all times. Everything went in the same place every time, so Mama knew exactly where to find what she wanted or needed.

The last stressor that we’ll discuss in this post is daily routines for our loved ones with dementias and/or Alzheimer’s Disease. Unstructured or erratic routines are huge source of stress for our loved ones, in part, because they’re losing or have lost their internal clocks of knowing when to do what and they’re depending on us as caregivers to help them, and when we don’t seem to have an internal clock and schedule of when to do what, it’s frightening.

dementia-regular-routineThe unpredictability of something as simple as mealtimes can be very, very scary (think about when we were kids and didn’t know how to tell time and if our parents had eaten whenever the mood struck them, there would’ve been a real concern about if we’d ever eat again).

If bedtime’s at a different time every night, then our loved ones suffering with dementias and/or Alzheimer’s Disease don’t know when they’re supposed to sleep and when they’re supposed to be awake. And if our daytime routines are different every day, there is absolutely no sense of a firm foundation that our loved ones can count on and expect to happen in sequence each day.

All of these create a huge amount of stress for our loved ones. And it’s unnecessary stress that can easily be eliminated. However, it means that we, as caregivers, need to put ourselves on a schedule and adhere to it without deviation (and that can be inconvenient, at times, for us, but it’s not about us, but about our loved ones, so we just have to have the discipline to make it happen).

Once a predictable routine is established and followed, this stressor will be eliminated from the many possible stressors that our loved ones suffering with dementias and/or Alzheimer’s may have be dealing with.

A lot of this is just common sense, but sometimes we have to be reminded to use common sense because life can be quite chaotic and crazy to the point that we, as caregivers, forget to stop, step back, and ascertain what we can do to help our loved ones out. It takes time and it takes patience and it takes slowing down to their paces, but they are worth it! 

The Role of Stress For Our Loved Ones Suffering From Dementias and Alzheimer’s Disease

Nov1

In the fall of 2013, I took the “Care of Elders with Alzheimer’s Disease and Other Major Neurocognitive Disorders” course, which was taught by the John Hopkins School of Nursing. This course is designed for both individual caregivers at home as well as caregivers in a community setting like assisted living facilities and nursing homes.

If you are a caregiver at home for a loved one suffering from dementias and/or Alzheimer’s Disease, I strongly urge you to take this class. It’s free (health professionals can pay a nominal fee to get a certificate and CEU credit for the course) and it’s got a lot of really good information.

Before I talk about the stress effects on our loved ones who suffer with these neurological diseases, let me talk about the course itself. The approach for care being presented by the course is, unfortunately, in my opinion, still largely confined to the halls of academia.

I have never seen the comprehensive – and sensible and workable – and integrated approach to care that is patient-centered this course emphasizes being done in practice in professional (physicians, nurses, hospitals, etc.) and community-based (assisted living and nursing home) environments.

That, in my opinion, is a major shortcoming and flaw in American health care and in the way America treats its elders – as a business commodity off which they make large profits with little effort and little concern, instead of as people who’ve given the best years of their lives to others – their families, their jobs, their country of residence (federal and state taxes, social security, Medicare, etc.) – and who should now be treated with dignity, honor, and respect. 

Ironically, though, it is among the individual caregivers of loved ones at home that you see this model that John Hopkins is outlining for care of elders with Alzheimer’s Disease and other major neurocognitive disorders in practice. Not all, but in some.

I certainly know this model was the one I used with my mom. She was the priority. Not me, not anything else, and maintaining her dignity and showing her unconditional love, honor, and respect was paramount. I enforced it with the health care professionals on our team, and those who didn’t or wouldn’t make Mama the priority and treat her with dignity and show her the honor, respect, and love that she deserved were quickly fired by me.

(Most of our team was wonderful, by the way, as individuals; my biggest challenge was always getting and keeping everyone on our team on the same page, and that will always be the biggest challenge for the team leader-caregiver.)

This post will talk about the physiological cycle of stress and the effect of what can become continual stress on our loved ones with dementias and/or Alzheimer’s Disease.

I will also briefly list some of the stressors that our loved ones face. In subsequent posts, I will give some tips and guidelines on how we, as caregivers for our loved ones, can reduce or eliminate some of the stressors that we have control over to alleviate as much as is within our power the sources of stress for our loved ones with dementias and/or Alzheimer’s Disease.

I had to, through observation and trial and error, learn a lot of this on my own with Mama, but because she was my priority, and her comfort, safety, and care along with the continual assurance that she was very much loved were paramount, I took the time (one of three key components missing in a lot of caregiving – the others are patience and slowing down to our loved ones’ paces) to figure it out.

The physiology of stress begins in the brain as a chemical reaction to a demand (real, possible, or perceived) that exceeds a person’s ability to adequately cope.

Stress initiates survival-oriented behavior, which is necessary for surviving acute danger. The neurological response is to turn off the prefrontal brain cortex, which is responsible for intelligent and insightful behavior because we don’t have time to reflect on a course of action in the face of an immediate threat. Instead the “survival centers” in the midbrain take over and cause the brain to react instantly in an instinctive way (the fight-or-flight response associated with lots of adrenaline being released). 

prefrontal brain cortex stressThe picture to the right shows the brain in low and high survival-behavior modes. Note the “holes” in the second image of the picture. These are not actual holes in the prefrontal brain cortex, but are areas which are inactive. That’s about as good a visual of stress’s effect on the brain as you can get.

In every situation where we feel stress, the following reactions occur:

  • Cognition is disturbed and can be impaired
  • Emotions are disturbed and can be impaired
  • Behavior that may adversely affect well-being

An example of cognition being disturbed and impaired is that often in the most intense moment of a stressful situation a condition I’ve always heard referred to as “brain freeze” (inability to think, remember, recall anything for a short period of time) can occur. The brain just locks up. For those of us who are not cognitively-impaired already, that’s a scary situation. Imagine how much more frightening it is for our loved ones who are cognitively-impaired by these diseases.

We have all seen and experienced the intense emotional disturbances and impairments of stress. One example is uncontrollable sobbing. Another is ferocious anger. Like cognition, this emotional disturbance and impairment is even more magnified in our loved ones when they experience stress.

An example of behavior that may adversely affect well-being on the extreme end would be suicide. However, other examples might be throwing things, flinging our bodies against something repeatedly, and self-injury like hitting ourselves or cutting ourselves with a sharp object.

This may seem incomprehensible to someone who’s never had unrelenting and long-term stress so strong that it literally creates an insurmountable and continual deep inner pain that will not go away, but this behavioral aspect seeks to override that internal pain with physical pain, which, in general, is much easier to deal with and is short-lived. However, the results can be devastatingly permanent.

For those of us who are not cognitively-impaired, getting past the action stage of the behavior component is a matter of the ability (and sometimes this is just sheer force of will) to wait it out until it passes (it’s brief, but in times of stress, will recur frequently). For our loved ones suffering from dementias and/or Alzheimer’s disease, many times this ability has either been compromised or lost.

We all know people who do well, most of the time, with a lot of stress and other people who do poorly, most of the time, with even a little bit of stress. Most of how we respond to stress depends on the coping mechanisms we’ve developed over time.

One of the immediate coping mechanisms is the ability to determine whether the stressor is real or perceived. If I see a car going 70 mph heading toward me on a sidewalk, the stress is real. However, if I believe – but don’t know – that something that would negatively impact me could happen, the stress is perceived.

Like my mom, perceived stress is something I – and maybe I’m the only one left now that she’s gone, because it’s not something I hear other people ever talk about – really struggle with and my coping mechanisms are not as good as they should be, although I’m trying to work on improving them.

Mama and I were very different in temperament in some ways, but this is a trait we unfortunately share – Mama because of her experiences, especially during her childhood, and me because I need a plan, need to clearly see the plan, and need to be able to execute the plan, and when periods of life hit where there’s no visible plan and I’m in what feels like interminable limbo hell, I get stressed to the max.

A lifetime of chronically high stress levels combined with poor coping mechanisms is now being linked, by scientific research, to a risk of developing vascular dementia (the result of strokes and TIA’s) and Alzheimer’s Disease. One of the responders to stress is a hormone produced by the adrenal gland called glucocorticoids. Repeated exposure to glucocorticoids accelerates the aging process of the brain and damages and shrinks brain tissue, which is clearly seen in Alzheimer’s disease. 

stress dementia Alzheimer's DiseaseThis gives me more incentive to quickly and drastically improve my coping mechanisms (and I admit, so far, I’m failing way more than I’m succeeding, but I’m determined to make this happen) because I know that Mama’s poor coping mechanisms to stress played a role – not the only one – in her development of vascular dementia and Alzheimer’s Disease.

As our loved ones become more cognitively-impaired by these diseases, more and more things of everyday life become stressors (real or perceived) and their anxiety-tolerance thresholds get lower and lower, until almost anything can be a source of stress.

Since we know one of the results of stress is cognitive disturbance and impairment, stressors for our loved ones with dementias and/or Alzheimer’s Disease create even greater cognitive disturbance and impairment, in the form of more confusion, more agitation, more anxiety, more restlessness. There can be a serious and sudden decline in cognitive function because of a stressor that we may or may not be aware of. In addition, we see the emotional and behavioral disturbances and impairments in exaggerated form as well (crying, yelling, hitting, biting, and pacing are common emotional and behavioral manifestations).

However, a lot of these stressors are easily remedied or eliminated, which we will discuss in the next few posts on this topic. For now, though, I’ll list of some of the most common stressors that we’ll be looking at:

  • Unmet needs
  • Physical environments
  • Routines
  • Communication
  • Hearing
  • Vision
  • General physical health

We’ll begin next week looking at these specifically to see how they can be stressors and what we, as loving caregivers, can do to remedy or eliminate them as stressors for our loved ones.