Tag Archive | vision

The Stressors of Communication, Vision, and Hearing in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease

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 “The Stressors of Unmet Needs, Physical Environment, and Routine in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease,” we looked at three common stressors associated with dementias and Alzheimer’s Disease and practical, common-sense ways to recognize them, address them, and minimize or eliminate them as a source of stress.

This post will discuss the next three most common stressors – communication, vision, and hearing – that our loved ones suffering with these diseases experience and practical, common-sense ways that we as caregivers can recognize them, address them, and minimize or manage them as a source of stress.

It is important to say at the outset that the stressors we’ll be discussing today require some creative solutions taking the guidelines listed here because of the integral link that each of these, standing alone without prior existence (which we’ll also look at) to the development and progression of dementias and Alzheimer’s Disease, has to each other and to the diminishing functioning of the brain itself. 

The first stressor we’ll discuss is communication. Issues with communication are often among the first signs of cognitive impairment with our loved ones and those issues become more pronounced as dementias and Alzheimer’s Disease progress. Common manifestations of early communication problems include:

  • Extensive searching for words when speaking 
  • Misidentifying common objects (e.g., calling a penknife or a boy a dog) both verbally and in writing
  • Omitting words both verbally and in writing
  • Speaking and writing sentences or phrases that don’t make sense
  • Not totally comprehending or misunderstanding what is being heard or read

As the diseases progress, so do the communication problems, often resulting in a total inability to communicate verbally. Losing the ability to read seems to occur after this, but comprehension of what is being read generally precedes the inability to recognize written words.

Losing the ability to communicate – to express oneself in an understandable way, to participate in interactive dialogue, to understand the meaning of words – is frustrating and isolating for our loved ones suffering from dementias and Alzheimer’s Disease (it’s also frustrating and sad for us as caregivers because we so badly want to find a way to open that door wide open again), and the result of that frustration and isolation creates stress in our loved ones.

While we as caregivers may not be able to completely eliminate the stressor of communication, there are things that we can do to minimize the stress associated with it.

normal process of communicating - disrupted in alzheimer's disease and dementiaIn the early stages, we can exercise patience in listening. This is easier said than done, but it is vital because it shows that we are interested in and care about what our loved ones are trying to communicate, instead of cutting them off because they’re taking a long time and faltering, and either completing what we think they’re trying to communicate, often erroneously, or simply dismissing them by interrupting them and saying what we want to say.

Here are a few strategies for keeping the lines of communication open for as long as possible and minimizing the stress associated with it:

  • Break complex ideas and tasks down into simple, understandable steps that are easy to comprehend and walk through the idea or process one step at a time. Repeating this step-by-step approach using consistent language each time, being a guide for our loved ones with each step, and going through each step at their pace will establish a routine of habits that eliminates much of the stress associated with what is essentially information overload for our loved ones.
  • Limit the number of options that our loved ones are presented with and make the options concrete. An example of how this would look is instead of asking “What do you want for dinner?,” ask “Do you want baked chicken or roast beef for dinner?”
  • For those situations where it applies, ask “yes” and “no” questions. (A caveat may be that as dementias and Alzheimer’s Disease progress, “yes” and “no” will get flipped around, so they may become an unreliable way to communicate.)
  • Use gestures, such as the motions of washing hands, brushing teeth, drinking something, or eating something.
  • For difficulties finding the right words, often times the easiest thing is to ask our loved ones to point to what they are talking about.
  • For sentences or phrases that don’t make sense, we should listen for meaningful words or ideas and then take those and ask questions about them to gain understanding into what our loved ones are trying to communicate.
  • For misunderstandings of what is being heard or read, it’s important for us to stay calm and not get defensive or reprimandingly corrective, because that will escalate our loved ones’ stress in a heartbeat. The easiest way I found to minimize this aspect of communication was to repeat what Mama had said and then ask her why she believed that or thought that. Once I gave her the opportunity to express herself and be heard, then I could find ways to gently steer her toward an accurate understanding and that eliminated both the stress of the immediate situation as well as the stress of the misunderstanding.
  • In cases where our loved ones are completely nonverbal, stress can be minimized by reading their nonverbal language (discomfort, pain, fatigue, etc. ) and by anticipating their needs (bathroom, food, drink, etc.).

Hearing and vision problems are often stressors for our loved ones suffering with dementias and Alzheimer’s Disease.

vision-stressWe discussed in detail many of the vision problems associated with these diseases in “‘I See Dead People’ – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias,” and how those vision problems (and the vision problems normally associated with the aging process) can be proportionately more severe as neurological damage increases, and we discussed ways to eliminate and minimize the stress related to those problems, so I encourage everyone to go back and read that.

Hearing is directly tied to neurological functioning as well, so as dementias and Alzheimer’s Disease progress in our loved ones, even those with normal hearing will experience auditory changes. For our loved ones with impaired hearing already, these changes are often complicated and compounded by the existing hearing loss.

auditory hallucinations misperceptions alzheimer's disease dementiaMost auditory changes are in the form of auditory hallucinations – hearing someone who isn’t there – or auditory misperceptions – believing they heard something said that wasn’t said or believing they heard words said a certain way.

This causes stress in our loved ones, mostly because – and neither I nor anyone else explain definitively why this is the case – what they believe they’ve heard is negative, dismissive, rejecting, and abandoning and the fear associated with these possibilities opens their stress flood gates.

This stressor is manifested by our loved ones in the forms of verbal anger and, at times, physical anger, extreme agitation, and extreme restlessness.

The keys to managing this stressor – the best outcome is to minimize it, because since it is the product of fear of losing the most basic of human needs, it’s virtually impossible to avoid or eliminate entirely – lie with us as caregivers. 

We must manage our emotions very, very carefully in both our speech and our actions, and this is one of our toughest battles in this journey with our loved ones.

Projecting gentleness, kindness, tenderness, patience, and equanamity at all times, whether we are experiencing any of those at the moment or not, is critical to minimizing this stressor for our loved ones who are suffering from dementias and Alzheimer’s Disease.

The more we can do this consistently, the more reassurance our loved ones will have that nothing negative is coming from us and that we will not dismiss them, we will not reject them, and we will not abandon them and the less fear (i.e., stress) our loved ones will experience.

Here are some guidelines on how to accomplish this:

  • We respond in a way that lets our loved ones know that we understand they’re concerned or afraid. Examples would be, “I know this is upsetting for you” or “I know this is scary for you.”
  • We reassure our loved ones that we’re in their corner. Examples would be “I’m not going to let anything bad happen to you,” or “I’ll take care of you.”
  • We redirect our loved ones’ attention to something else that’s positive, if possible (this sounds good in theory, but it doesn’t always happen in reality – sometimes we just have to stop at reassurance, walk away for a little while, and be sure to come back and try again later, especially if our loved ones are so worked up that there’s no calming them down nor persuading them that we’re the “good guys”).

In our next and last post in this series on stressors for our loved ones suffering from dementias and Alzheimer’s Disease will look at how physical health can be a stressor and how we as caregivers can minimize and eliminate, within certain parameters, the associated stress for our loved ones.

“I See Dead People” – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias

Today’s post will discuss visual and perceptual problems that are common in our loved ones suffering from dementias and Alzheimer’s Disease. These problems fall into three main categories: vision, perception, and hallucinations.

anatomy-of-the-eyeVision problems occur as part of the normal aging process. However, because the brain plays such an important role in how and what we see, the aggregate damage from dementias and Alzheimer’s Disease exacerbates and disproportionately magnifies the normal age-related vision problems that older people develop.

Two common age-related vision problems are cataracts (clouding of the lens inside the eye that decreases vision) and macular degeneration.

The macula is located behind the eye in the center of the retina. Although the macula makes up just 1/20 of the entire retina, it is responsible for the sharp, clear, and undistorted detail of central vision, which enables us to read, recognize faces, drive a car, and watch television.

There are two types of macular degeneration. “Dry” macular degeneration is how age-related macular degeneration starts and drusen (German for “small dots”) begin to form in the retina around the macula. It is important to note that the presence of drusen does not necessarily mean that macular degeneration will eventually occur, nor does it mean future vision loss.

dry macular degenerationHowever, if drusen continue to form, then dry macular degeneration will occur. The good news is that the progression of this form of macular degeneration is very slow and noticeable visual impairments usually do not occur for several years. However, when they do occur, the same field of vision problems that sufferers of wet macular degeneration experience will be present.

wet macular degeneration“Wet” macular degeneration, on the other hand, is more serious and can result in immediate and severe vision loss. Wet macular degeneration occurs when blood vessels burst in the retina and fluid and blood leaks result in cell death.  

While there is no treatment to reverse – although vitamin supplementation may help slow the progress – dry macular degeneration, there are very effective treatments to stop the fluid and blood leaks and prevent damage to the eye at retinal eye centers for wet macular degeneration. This is a serious vision condition that needs to be treated immediately.

This sequence of pictures and graphs (showing the distortion of central vision) shows what the progression of wet macular degeneration does to vision:

Progression of wet macular degeneration

I bring these up because my mom had dry macular degeneration in one eye (her stronger eye) and wet macular degeneration, which we treated aggressively up until her death, in the other eye (her weaker eye) before she was diagnosed with vascular dementia, Lewy Body dementia, and Alzheimer’s Disease.

And I know, with the damage to other parts of her brain from the dementias and Alzheimer’s Disease, the visual distortions caused by these common age-related vision problems were exaggerated.

It’s important to know this is not uncommon with our loved ones suffering from dementias and Alzheimer’s Disease, and is part of what makes the whole process a losing battle from the get-go.

One of the most noticeable visual distortions associated with dementias and Alzheimer’s Disease is characterized by sudden stops at door thresholds and on walking surfaces where there are delineated changes in color and consistency, such as going from a wood or tiled floor onto carpeted floor.

These are known as “visual cliffs,” and, interestingly, the same phenomenon is observed in infants as they begin to crawl. What causes these abrupt stops are abnormal depth perception and a fear of falling.

The ability to accurately perceive depth seems to erode in proportion with the increased damage to the brain caused by dementias and Alzheimer’s Disease.

An unexpected benefit of this, however, is that caregivers can use this visual distortion to help control wandering by putting “cliffs” (a two-inch piece of black tape) at the bottom of and on the thresholds of exterior doors. This is typically pretty effective.

Other common vision distortions include:

  • Illusions – what the person sees is a “distortion of reality.” This most likely occurs because of a particular characteristic of an object, such as a shiny surface or a patterned print. An example of an illusion would be seeing a face in a curtain with a pattern.
  • Misperceptions – what the person sees is a “best guess” at the inaccurate or distorted information the brain has received from the eyes. An example of this would be believing that a shadow on a sidewalk is a hole in the sidewalk.
  • Misidentifications – damage to specific parts of the brain will cause problems identifying objects and people. For example, distinguishing between a daughter or son, sister or brother, mother or father, and a spouse becomes difficult and then impossible.

If we, as loving caregivers, can better understand the what and the why of the visuoperceptive difficulties inherent in dementias and Alzheimer’s Disease, then we are better equipped to adapt our loved ones’ environments to make those environments as comfortable, as non-threatening, and as “safe” as possible. We’ll never be able to completely eliminate the effects because the diseases are bigger than our best efforts.

Some of the causes of visuoperceptive difficulties in our loved ones with dementias and Alzheimer’s Disease include:

  • decreased sensitivity to differences in contrast (including color contrast such as black and white, and contrast between objects and background)
  • reduced ability to detect movement
  • changes to the visual field (how much you can see around the edge of your vision, while looking straight ahead)
  • reduced ability to detect different colors
  • changes to the reaction of the pupil to light
  • problems directing or changing gaze
  • problems with the recognition of objects, faces and colors
  • loss of ability to name what has been seen
  • double vision

Dementias and Alzheimer’s Disease also bring difficulties with orientation. Evidence of this includes:

  • bumping into things
  • swerving to avoid door frames
  • difficulties reaching for things within the visual environment (such as a glass of water or a door handle)
  • getting lost or disorientated, even in familiar environments.

The cumulative effect of the visuoperceptual changes brought on by dementias and Alzheimer’s Disease will result in:

  • difficulty reading and writing, doing puzzles or playing board games
  • problems locating people or objects, even though they may be in front of our loved ones (this may be because of other distracting visual information, such as patterned wallpaper or curtains, or because of a lack of color contrast [for example, not being able to see mashed potatoes on a white plate])
  • misinterpretation of mirrored reflections and shadows (this can manifest itself as our loved ones seeing an intruder or refusing to go into a bathroom because reflections in the mirror make it appear occupied)
  • difficulty sitting down correctly in a chair or on the toilet
  • Confusion and/or restlessness because of an environment that is visually over-stimulating and difficult to navigate

Visuoperceptual difficulties also lead to problems moving around. These problems make our loved ones fearful of falling and, as a result, they tend to dramatically slow down their movements while they try to walk safely.

As loving caregivers, we should learn to anticipate these situations, help explain what is being encountered, offer our arms for support, offer encouragement and slow down our own movements to match those of our loved ones.

Specific difficulties that our loved ones with dementias and Alzheimer’s Disease have when moving around include:

  • misjudging distances and where objects are, even in familiar environments
  • taking very high steps over breaks in walking surfaces (from a wood or tiled floor to carpet and door thresholds, for example) or shadows because the change in color looks like a change in height
  • struggling with going down stairs because they can’t judge how many steps there are and where the next one is
  • avoiding walking on shiny floors because they appear wet or slippery.

As caregivers, we can help minimize some of the effects of visuoperceptive difficulties for our loved ones suffering from dementias and Alzheimer’s Disease in several ways.

The first way is to ensure that our loved ones get regular eye health checkups and that any age-related vision problems that can be treated are treated immediately and aggressively.

A deliberate use of colors can help with diminished contrast vision. For example, a green plate on a white tablecloth is much easier to see than a white plate on a white tablecloth. Additionally, changing from a standard white toilet seat to a colored toilet seat will make the toilet seat easier to see.

We can also use color to highlight important objects and orientation points (for example, the bathroom door).

Improving the lighting levels in our homes will also help our loved ones, and ensuring that lighting is even around the house will minimize shadows and “dark areas,” making navigation and perception easier.

Use solid colors instead of patterns in flooring, carpeting, and runners to give a safer environment for navigating the house.

If mirrors and shiny surfaces cause problems with illusions and misperceptions, then remove those that are practical to remove and cover the rest.

Be sure to close curtains or blinds at night.

How we respond to our loved ones with visuoperceptual difficulties is perhaps the most critical part, in my opinion, of showing our love for them.

I have always had a very tender and gentle side, but I never showed or saw much of it myself until I took over the responsibility from my dad of taking care of Mama and making sure she was comfortable, safe, protected and okay.

Our responses should be calm and loving always. And this can be challenging, especially when we’re tired or aggravated. I am stating an ideal that I didn’t always attain with Mama. But it’s our goal to do this.

When our loved ones don’t recognize an object or person, we should not draw attention to the mistake nor ask questions that would put our loved ones “on the spot.”

We can explain what the object is used for or who the person is, but if it doesn’t work, let it go. It’s far more important to listen to what our loved ones are saying – and encouraging them to converse and participate in activities – than it is for us to be right.

When our loved ones don’t recognize people, we can ask friends and relatives to introduce themselves to our loved ones. Not recognizing people can be very distressing for our loved ones, and it can be upsetting for the people who are no longer recognized.

However, in the end, our job is to make sure our loved ones feel safe, encouraged, and supported. This is not their fault, so criticism or trying to force them to do something they are mentally incapable of doing is cruel and will often make our loved ones retreat from interaction with us and others. That does no one any good.

Hallucinations also fall into the vision category because our loved ones often see people who are not there or people who have died as if they are alive and in the room with them. Mama saw Daddy regularly, even though when she started seeing him, he’d already been dead for ten years.

She also saw friends and family from her earlier years from time to time.

And she saw people going in and out of her apartment (usually a young boy and girl, who’d go in when she left, and leave just as she came back in) just before her psychiatric hospitalization and the subsequent diagnoses of mid-to-late-stage vascular dementia and Alzheimer’s Disease in 2010.

Most of the time, she told me about these “visits” after the fact, but two hallucinations happened with me there when she was living with me. And they floored me, but instead of insisting there was no one there, I let her talk about them, which gave me time to formulate honest answers to her questions about them without hurting her or dismissing her.

The first happened just after she’d awoken one morning and I was sitting on the bed with her holding her hand while she woke up. I was speechless when she pointed to the bookcase just to the left of the bed and she asked me, “Do you see those two angels over there?” I told her I didn’t, but I encouraged her to tell me what she was seeing. She wasn’t scared and she seemed to be happy “they” were there. 

As soon as Mama was fully awake, they were gone.

The second one was much different. We got up in the middle of the night because she needed to go to the bathroom (I kept the bathroom door fully open and a light on at night, and since it was just the two of us, I seldom closed the door). Just after she got in the bathroom with my help, she said, “Close the door! I don’t want that man to see me!”

I closed the door with both of us in there. When we were done, I opened the door to help her back to bed and she asked me if the man had gone upstairs. I nodded. She relaxed and went back to bed and back to sleep.

When she awoke the next morning, she didn’t say anything about the man right away. But when we were eating breakfast, she asked me where the man and the children – there were no kids the night before – were. I suspected she was thinking of Daddy and us as kids, so I told her everyone was gone and just the two of us were there at home.

That ended it, but it didn’t end the hallucinations that I continued to hear about right up until her death.

I was initially very conflicted about how to respond to Mama about the hallucinations because I knew they weren’t real and I believed I would be dishonest if I gave any indication that I thought they were.

However, I realized the hallucinations were real to her, even if I knew they weren’t really happening, so I encouraged her to talk about them in a way that didn’t lead her to ask me questions because I wasn’t sure how to answer them.

And I found that to be the best approach. She wasn’t afraid, she didn’t shut down, and she didn’t feel threatened by my response. And I heard some pretty interesting stories in the process. It was win-win.

My next post will tackle some of the psychoses that our loved ones suffer with dementias and Alzheimer’s Disease. While not all of these are negative – I will give some specific examples – many of them are and they, in my opinion, are one of the toughest aspects of these diseases to deal with rationally, lovingly, and calmly.

But it can be done and I will pass on some tips and lessons I learned in the process in the hope that it will help you.