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

Jul22

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.

New Facebook Group for Caregivers

Jul19

I’ve created the Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses Facebook group. The group offers practical and informative support for caregivers of loved ones suffering from Alzheimer’s Disease, dementia, and other age-related illnesses. Please feel free to ask questions and seek support and we will be happy to help. If we don’t know the answer, we will do our best to find resources to help you.

It’s an open group, so anyone can join. Please consider joining and spreading the word so others know this resource is available.

You are not alone.

Experiencing Dementias and Alzheimer’s Disease From the Inside

Jul14

I recently watched The Iron Lady, the 2011 movie in which Meryl Streep portrayed Margaret Thatcher, the late Prime Minister of Great Britain. I think everyone ought to see this movie, not so much for the historical content, but to experience from the inside what our loved ones with dementias and Alzheimer’s Disease experience.

According to Mrs. Thatcher’s daughter, Carol, her battle with dementia and/or Alzheimer’s disease became noticeable in 2000 and The Iron Lady focuses on the years after the death of her husband, Dennis, in 2003.

I cannot adequately express how much insight and understanding experiencing this – and I literally felt like I was experiencing it – gave me into what Mom went through.

I also cannot begin to convey the deeper empathy, Margaret Thatcher, Prime Minister, Great Britain, The Iron Ladysympathy, and protectiveness that I experienced as well. There were many moments when I wished I could take both Mrs. Thatcher and Mom into my arms and just hold them tight and not let go.

This movie touched my heart on its deepest levels and my tears and my helplessness welled up deep within me. And, yet, it looked like – and explained – a lot of what I saw, from the outside, with Mom.

I remember the first time Mom told me that Daddy, who’d been dead for ten years, had visited her the night before and that he’d left right before I got there. Mrs. Thatcher spent a lot of time with Dennis, as the dementia/Alzheimer’s Disease progressed, after his death as well.

There is a frenetic and frenzied scene in which, in an attempt to banish Dennis for good, Mrs. Thatcher packs everything of his up in a few short hours, including a suitcase for him. He takes the suitcase and leaves for good while she is begging him not to leave just yet. It’s a very poignant scene.

One of the brilliant aspects of this movie is that it captures the mental confusion and chaos of dementias and Alzheimer’s Disease. We experience it right along with Mrs. Thatcher. And it made sense to me because it explained a lot of what I had seen with Mom. Interestingly, it didn’t bother me nor did it seem weird to me. It looked a lot like what I already knew.

But the difference was that I was finally able to walk in Mom’s shoes and know how she experienced it. That made me love her even more – if that’s possible – and it made me wish I’d known then what I know now. But maybe I can take what I learned and, as always, pay it forward.

Sundowning and the Sleep Conundrum of Dementias and Alzheimer’s Disease

Jul11

Today’s post will discuss how dementias and Alzheimer’s Disease affect circadian rhythms and sleep, as well as some tips to help manage sleep disruptions effectively.

There are a lot of factors that make up our sleep behavior. I first want to discuss the biology of sleep and how, even if there are no other sleep disorders, dementias and Alzheimer’s Disease disrupt the biological sleep cycle.

Normal Circadian RhythmHumans have an internal 24-hour clock that is synchronized with daytime and nighttime (light has a profound impact on this clock). This clock is referred to as our circadian rhythm.

As people age, this clock changes so that they normally tend to go to sleep earlier and wake up earlier. Sleep disorders like insomnia and sleep apnea are more common in older people as well. But their circadian rhythms are still primarily based on light (the more light, the more wakefulness; the less light, the more sleepiness) and time of day.

However, in our loved ones suffering from dementias and Alzheimer’s Disease, circadian rhythms go out the window because the diseases impair the brain’s ability to tell time and to distinguish between light and dark as indicators of when to sleep and when to awaken. It is sometimes helpful, in the early stages, to get a 24-hour clock to help our loved ones distinguish between A.M. hours and P.M. hours, but eventually that will be a casualty of the diseases.

The most common circadian rhythm disorder associated with dementias and Alzheimer’s Disease is a phenomenon known as “sundowning.” It occurs in the late afternoon and early evening.

It is characterized by speech and behavior repetition, constant pacing , excessive restlessness, wandering, disorientation to time and place, and agitation or aggression towards others.

Wandering is especially dangerous because if our loved ones get outside, they can walk long distances with limited vision because of the sun going down, sometimes on crowded roadways, and are susceptible to being the victims of crime and vehicular death.

One probable cause of sundowning is that there is damage to the part ofSleep/Wake Patterns Circadian Rhythm the brain that produces melatonin (the sleep hormone) and the reduced production causes an irregular sleep-wake rhythm. 

Another theory on the cause of sundowning is related to the energy levels of our loved ones with dementias and Alzheimer’s Disease . At the end of the day they are likely tired from the day’s activities.

This can aggravate the symptoms of the diseases, making them more anxious and stressed. Before the onset of these diseases, this time of day would have typically been the busiest for them. They would be getting home from work, getting ready for dinner, doing household chores, and going to bed. Now that they’re unable to do those things, they have little to do at a time that was the busiest of the day for them.

The most common sleep disorder that occurs with dementias and Alzheimer’s Disease is an irregular sleep-wake rhythm. You can see in the graph above how disruptive this rhythm is and why our loved ones with dementias and Alzheimer’s can be so tired, in general, all the time.

However, I believe the most damaging effect of this sleep pattern is that it actually prevents the restorative/repair functions that occur during a normal sleep rhythm, which exacerbates the neurological damage that dementias and Alzheimer’s Disease do to the brain. In short, this sleep pattern makes the diseases worse.

The most effective – and safe – way to try to minimize an irregular sleep-wake rhythm is to add melatonin to nighttime medications. As I’ve said before, up to 12 mg of melatonin is considered safe, but start with a low dose (3 mg or 5 mg) and give it time to see if that gives our loved ones more continuous and restful sleep. The goal is to keep them asleep at night and keep them awake during the day. Too much melatonin can have them sleeping all the time.

I would also suggest keeping our loved ones active and busy – as they are able – during the day (I will talk more about this in another post, but will briefly touch on it here). Up until the last week and a half of my mom’s life, when she’d had the major heart attack and just couldn’t do much with me, I had her help me with the household chores that she could like making the bed, folding laundry, preparing meals, and helping me with the dishes.

I didn’t care whether it was perfect or not (initially a big challenge to my normal OCD about those kinds of things), but I found that the more she did, the better she felt and the better she slept.

There is a sleep disorder that is specific to Lewy Body dementia and is one of the primary symptoms of that form of dementia. It is called R.E.M. sleep behavior disorder.

R.E.M. sleep behavior disorder is impossible to miss. Anytime a sufferer is asleep, they are in motion acting out their dreams and, at least in my mom’s case, having sometimes understandable and sometimes not in-depth conversations. It is also characterized by “picking” at clothing or bedclothes while asleep.

On the one hand, at least for me, it was quite fascinating to watch Mom dream and act out her dreams. Apparently – and I’ve seen this with other Lewy Body dementia sufferers, so it must be common for all of us to dream about – she dreamed quite often about food, because she’d often make the motion of either eating with a utensil or with her hands to her mouth. That was usually when she was napping during the day. 

Most of her conversations occurred at night, although occasionally she’d say a line or two during a daytime nap. And they’d last all night sometimes.

Her nightime dreams also included a lot of moving around and possibly a version of restless legs syndrome (not uncommon for R.E.M. sleep behavior disorder).

While I know this had a detrimental effect on her quality of sleep, it was disruptive for me too. I have always been a light sleeper and have had my own issues all my life with not sleeping much (and sometimes not sleeping at all for a day or two) and not getting quality sleep (waking up a lot or being wide awake in the early morning hours and not being able to go back to sleep for an hour or two). With Mom talking and moving around all night, it made sleep that much more difficult for me.

An increase in melatonin helped with this as well. I bumped her up to 7 mg each night (she was at 5 mg before) and it was just enough to keep most of the symptoms at bay. There were still some nights when it was noticeable, but the worst of the symptoms seemed to be alleviated. And because she slept better, she felt better and did better during the daytime.

I hope this brief overview helps. If you have any questions or any topics you would like to see discussed here, leave me a comment or email me at goinggentleintothatgoodnight.com. If I don’t know the answer, I’ll do my best to try to find it.

You’re not alone and my intent and goal is to keep reminding you of that and help you as much as I am able.

“Fields of Gold: A Love Story” Published and Available for Purchase

Jul4

My memoir about my parents – who were both orphaned at very young ages – and their life together, which included adopting my sisters and me, and then Mama’s journey to the end last August, Fields of Gold: A Love Story, has been published and is now available for purchase.

Watch the publication announcement video to put some faces with the posts I write here, including that of my beautiful Mama.

I wrote this memoir in about six weeks just after Mama died, first to preserve our family stories for my sisters and me and her grandchildren, but then it evolved into a full-length book that chronicled our lives from beginning to end – at least for my parents – and I hope will live on as a tribute to their legacy and a reminder to each of us of the legacy we are now responsible for carrying on and passing on to the next generations.

The Layperson’s Guide to Medications and Vitamins Relating to Dementias and Alzheimer’s Disease

Jun24

This post will be a comprehensive list – in one place – of the prescription medications and vitamins that may be prescribed for our loved ones suffering from dementias and Alzheimer’s Disease.

My main purpose in doing this is so that caregivers, as medical advocates for our loved ones, have the information needed about the common medications and vitamins used to treat the symptoms of these diseases. 

Currently there is a lot of information on the internet about these, but it’s so scattered and oftentimes so clinically-written that it’s impossible to pull it all together and make wise decisions as to accepting or rejecting medication proposals from primary care physicians and psychiatrists.

And the preceding paragraph has some information caregivers need to know, exercise, and require for their loved ones.

First, both a primary care physician and a psychiatrist need to be involved in medical care for our loved ones. One of the first requests that should be made to the primary care physician after a dementias and/or Alzheimer Disease diagnoses should be a referral to a geriatric psychiatrist.

The reason caregivers need to do this is because geriatric psychiatrists specialize in treating elderly patients and they also have access to the latest research in the treatment of the symptoms of dementias and Alzheimer’s Disease.

Primary care physicians are not specialists. This includes internists. They know a little bit about a lot of things, which is exactly what they were trained for (and that’s not a bad thing), but they don’t have the time nor the resources to be experts in any one thing.

Therefore, a geriatric psychiatrist is an absolute necessity to ensure our loved ones get the best care possible to treat the symptoms of these diseases.

Second, you have the right to refuse medication. For example, one of the medications that Mom’s primary care physician wanted to give her as the Lewy Body dementia symptoms worsened was Abilify. No doubt you’ve all seen the commercials touting Abilify as a “booster” for use with anti-depressants to relieve chronic depression.

This is an “off-label” use of the drug. So is prescribing it for our loved ones with dementias and Alzheimer’s Disease (a lot of the mood and psychosis-managing drugs prescribed for people suffering from dementias and Alzheimer’s Disease are “off-label” uses of those drugs).

I did the homework on it before I filled the prescription. Ability was created to treat schizophrenia. That would have probably been okay, but then I saw the warning that “ABILIFY (aripiprazole) is not approved for the treatment of people with dementia-related psychosis.”

In addition, by then I knew Mom also had Lewy Body dementia in addition to vascular dementia and Alzheimer’s Disease and I knew about the increased neuroleptic sensitivity associated with Lewy Body dementia, so I didn’t fill the prescription.

Prescriptions Dementia Alzheimer's DiseaseThe first category of prescription medications is the cognitive enhancers. These drugs are designed to maintain mental health and may improve memory, awareness and the ability of our loved ones to go about their daily activities by boosting the function of existing neurotransmitters involved in memory and judgment in the brain. They will not reverse nor stop the neurological course of the diseases. They are:

  • Aricept – Approved for all stages of dementias and Alzheimer’s Disease, but most effective in mild to moderate stages
  • Razadyne – Mild to moderate stages of dementias and Alzheimer’s Disease
  • Excelon – Mild to moderate stages of dementias and Alzheimer’s Disease
  • Namenda – Moderate to severe stages of dementias and Alzheimer’s Disease

The second category of prescription medications treats the mood and psychosis symptoms of dementias and Alzheimer’s Disease.

These medications need to be closely monitored and carefully dosed.

The optimal result of these medications is mood stabilization and no psychosis. If your loved ones are “knocked out” by this category of medications, the doses are too high. If your loved ones are “out of control,” the doses are too low. This is another reason you want a psychiatrist involved.

There are many possible combinations of this category of drugs. All the anti-psychotic drugs have possible side effects and extreme caution should be exercised, because of the high sensitivity to neuroleptics,  in using these with our loved ones with Lewy Body dementia. Some of the most commonly-used medications are:

  • SeroquelXR – anti-psychotic (possible side effects of neuroleptic sensitivity and tardive dyskinesia in Lewy Body dementia)
  • Citalopram – anti-depressant
  • Clonazepam – anti-anxiety

Anti-anxiety medications seem to be the most frequently mismanaged in this category of drugs. My advice is to advocate with our loved ones’ psychiatrists for low dosages and have them prescribe it to be taken as-needed instead of as part of the daily medication regimen.

The medication, Halcyon, by the way, should be avoided at all costs in people suffering from dementias and Alzheimer’s Disease. It really wreaks havoc and it has a very long half-life! The most likely place this would be given is during hospitalizations, so be sure to let all the hospital staff you come in contact with know that our loved ones should not be given Halcyon for anxiety and/or sleep.

vitamins for dementia and Alzheimer's DiseaseVitamin supplements may be added to address some of the functioning difficulties brought on by dementias and Alzheimer’s Disease. In my personal experience, I really don’t believe they’re all that effective after the fact of diagnosis. However, we all should make sure we have plenty of this in our own diets now to protect ourselves.

The most common are:

  • Folic acid – helps memory and mental processing speed
  • Vitamin D3 – protects the brain by controlling neurotransmitters and clearing amyloid plaques (found in Alzheimer’s Disease)
  • Vitamin C – protects cells from the effects of free radicals
  • Melatonin – facilitates sleep

Please be careful to work with your loved one’s primary care physician on vitamin supplementation. In many instances, these brain diseases are not the only health issues our loved ones are dealing with and some of the vitamins that might address dementia and Alzheimer’s Disease symptoms could negatively interact with other prescription medication for other health problems.

Our job as loving caregivers is to give the best care we are able to our loved ones, advocating for them, protecting them, making sure that everything that is being done is in their best interests.

We are there because we love them.

All the other participants in the caregiving journey are there for other reasons and those reasons may, intentionally or unintentionally, not consider what is best for our loved ones.

So it’s our job to make sure that we are the gatekeepers to the best care we are able to provide for the people we love. It’s a big responsibility, but, in my opinion, there is no greater gift we can give or be given in this life than to do this.

The Layperson’s Guide to Vascular Dementia, Multi-Infarct Dementia, Small Vessel Ischemia, and TIA’s

Jun13

There are many kinds of dementia. In the next few posts, we’ll take a look at a few of them, along with Alzheimer’s Disease, which is a distinct neurological diagnosis from dementias.

Before we start, it is important to note that our loved ones can suffer from only Alzheimer’s Disease or only one kind of dementia. Or they may suffer from Alzheimer’s Disease and multiple kinds of dementia. That distinction is important to loving caregiving, which includes medical advocacy for our loved ones, because each brain disease is distinct, affects the brain differently, and has specific characteristics and symptoms and treatment.

I will admit here that one of my pet peeves while caring for my mom was hearing some people who have no real knowledge of these diseases lump everyone who suffers from them under Alzheimer’s Disease and giving advice on how to deal with that, not realizing the complexity of the situation posed by the presence of both dementias and Alzheimer’s Disease.

So, for non-caregivers or those who are unfamiliar and inexperienced with these diseases who may be reading this, please don’t assume because you’ve seen or read The Notebook that you’re an expert on the subject and please don’t offer medical diagnoses and advice.

The best gift you can give is to just listen and offer non-medical support. Most caregivers get so deep into the details and all the aspects of these diseases because they need to be able to take care of their loved ones in so many ways that if there were such a thing as a non-M.D. expert on them, most caregivers would qualify.

This post will discuss vascular (multi-infarct) dementia. The cause of this dementia is small vessel ischemia in the brain, which presents itself as chronic transient ischemic attacks (TIA’s). TIA’s are sometimes also referred to as mini-strokes.

TIA’s can occur when the small vessels in the brain get temporarily blocked, cutting off the blood supply and oxygen to that part of the brain. The cumulative affect of these is what causes the damage that is present in vascular dementia. Multi-infarct dementia just means that there are many areas in the brain where this vascular damage has occurred and accrued.

Although high blood pressure is a culprit, high levels of stress and a history of migraines are also players in these kind of TIA’s.

In my mom’s case, all three were factors, but high levels of stress were what brought on the majority of her TIA’s. I suspect she started having these as a small child, because there were times that she just couldn’t remember what happened in a specific instance but she’d referred to it as “blacking out.”

She never lost consciousness with them that I witnessed, but she used the same expression to describes times when we kids were all babies and she was under a lot of stress and she couldn’t remember certain instances of things.

Her TIA’s were common as we grew up, and although we never got over the shock of the suddenness of symptoms and the helplessness we had to do anything about it, we all got pretty good at taking care of her when she had one, and that lasted for Daddy until his death, and for me into adulthood until Mama’s death.

Her TIA’s always presented the same way. They were sudden. Her face would lose all color and her lips would get very pursed as she seemed to salivate more. There was a sort of paralysis except for her right hand. She would start rubbing her thumb across the first two fingers and that would last until the episode was over. I suspect there was a sense of unreality associated with the TIA, so the feeling of her fingers rubbing together was the only reality for her in those episodes.

I’d always hold Mama’s left hand and kind of stroke it so she knew I was there and she wasn’t alone. When the TIA was over, she’d immediately try to talk and everything came out totally garbled. That would last about thirty minutes and then she’d be okay.

And she never remembered them happening. I remember the first time I was giving her medical history as her POA at an ER (and this was way before the dementias and Alzheimer’s Disease) and I named TIA’s as part of her medical history and she disagreed with me and said she didn’t remember ever having those. I laughed at the time and told her that not remembering them was part of the symptom of having them.

small-vessel-ischemia-brain-mriOver time, though, as small vessel ischemia recurs, eventually clusters of damage occur in the brain. This disrupts the normal neurological pathways of how information is learned and communicated. One of the most clear indicators of vascular dementia is difficulty in communication. One of these difficulties is misnaming things.

For example, the brain knows that a pencil is a pencil. Someone suffering from vascular dementia knows a pencil is a pencil. But because of the damaged pathways, there is often a break in the connection between knowledge and speech, so someone with vascular dementia is just as likely to call a pencil an apple.

Another clear indicator of vascular dementia is slower processing time. A brain with vascular dementia will fight to reroute stored information to speech. However, because of the extensive damage, it has to take a much more convoluted and lengthier route to do that conversion.

A third clear indicator of vascular dementia is that it occurs in sudden, steep steps of decline (brought on by recurrent TIA’s and new clustered areas of damage in the brain). These can occur in a very short period of time, as they did in my mom’s case.

In addition to these definitive indicators, vascular dementia also has features in common with other dementias, including difficulty learning anything new, cognitive impairment, problems with short-term memory, extreme emotional swings, and confusion.

There are no specific treatments for vascular dementia. Unlike any other organ in the body, once the brain has sustained damage, that damage is permanent.

However, there are medications that can address the symptoms of vascular dementia. The two most likely to help are cognitive enhancers: Excelon (although this comes in oral form, the 24-hour patch is best, if there’s no allergic reaction, to get the continual effect of medication that comes in a starting dose of 4.6 mg, a stabilizing dose of 9.5 mg, and a high dose at 13.3 mg)  and Namenda (given in 5 mg increments, two to three times a day).

When I discuss the medications in later posts, I will give some practical experience and advice on these two medications, especially with regard to Medicare, the “donut hole,” and working with your loved one’s psychiatrist to get the medication at either no charge or a reduced rate during the “donut hole” period. Both of these are patented, so there’s no cheaper generic version. And paying full price for them will break the bank.

In the next post, we’ll take a look at Lewy Body dementia: what is is, how it’s diagnosed, what it looks like, and effective treatments for the symptoms.