This is actually a fairly tricky question. There are numerous considerations and nuances. For one thing, it depends on whether we’re using a rough definition of “terminal illness” (typical of everyday speech), or if we’re using a technical definition (as we might in insurance or medical contexts). Here’s the short answer.

There is no cure for Alzheimer’s. It is inarguably “terminal” in the sense that a person who is diagnosed with the disease will eventually die with it. Although it certainly diminishes longevity and negatively impacts quality of life, Alzheimer’s will probably not result in immanent death for people who are in its early stages. However, by the time that an individual is in its advanced stages, life expectancy may be as little as one to two years. Thus, late-stage Alzheimer’s is often “terminal” in the technical sense as well.

What Is a ‘Terminal Illness’?

A General Definition

In general, if you have a “terminal illness,” then you have an illness that is expected to end with your death. Intuitively, if a disease is expected to result in your death, then that disease is incurable.

This seems obvious since, if the disease were curable, then you wouldn’t be expected to die from it.

But, what does it mean to be “incurable”? As a first pass, let’s say that for a disease to be incurable means that it cannot be corrected, remedied, or reversed.

An incurable disease might still be “treated” in some broad sense. For instance, an Alzheimer’s sufferer might receive pharmaceuticals that are intended to slow the progression of the disease or to minimize or eliminate behavioral problems that are byproducts of the Alzheimer’s. But, the Alzheimer’s “treatments” that are available are not expected or advertised to correct, remedy, or reverse the dementia.

Broad Vs. Narrow Definitions

Perhaps the best way to think about the idea of a “terminal illness” is to think of it as having a broad (or “loose”) sense and a narrow (or “strict”) sense.

Let me put it like this. On the broad usage, a terminal illness is one that negatively affects your lifespan. Additionally, since it is incurable (see above), you will still suffer from the disease when you die. Whether or not you actually die from Alzheimer’s or merely with Alzheimer’s is another matter. (For more on that question, see the companion article “How Does a Person Actually Die From Alzheimer’s Dementia?”)

This broad use of the term is common in everyday speech, where people often speak loosely. For example, when a person is angry, he or she might say, “I could just kill someone!” But there is usually no cause to believe that an bona fide murder is about to take place. The phraseology simply means that the speaker is really put out. Or, less violently – and perhaps more on-point – we might say that we’re suffering from the “stomach flu,” when we have some gastrointestinal distress. In fact, the word “flu” is short for influenza, which is a respiratory virus. But the fact that this designation is not strictly accurate is beside the point. The utterance means that the speaker has major stomach problems, and the hearers all get the point.

So, in the broad and loose sense, yeah, Alzheimer’s seems pretty terminal. There’s no cure. And you’re going to die with it. If you get it, it’s really bad. This is probably the point of the utterance in everyday speech. And the point is understandable.

But there is also a technical definition. If you have a long-term care insurance policy – or a life-insurance policy with a long-term care rider – you’re going to want to at least familiarize yourself with this definition as well.

On the narrow definition, a “terminal illness” is one that you are expected within a specified – and highly compressed – time period. Usually, we’re talking about death within twelve months of fewer. Certainly, no longer than twenty-four months.

Thus, on the narrow definition, we have to be a bit more careful with the way that we wield the word “terminal.” Think about a person who has just been diagnosed with mild-cognitive impairment (MCI) or with early-stage Alzheimer’s. In many cases, the prognosis may be relatively good (or at least, not horrendously poor) for several more years. A person in beginning stages may have a decade or more to live.

We can see that if a “terminal illness” is one for which death is expected within 1-2 years; but a newly diagnosed Alzheimer’s patient has (let’s assume) five to fifteen years to live; then it follows straightforwardly that such a condition would not count as terminal in the strict sense.

I hasten to remind readers, though, that Alzheimer’s is a degenerative or progressive condition. Whereas it may be true that “Alzheimer’s” (period) is not a terminal illness, we might say that late-stage Alzheimer’s arguably is.

This is because, in its advanced stages, the sufferer may very well be facing the prospect of dying within one to two years.

So, what is the verdict?

I’ll summarize it this way. Alzheimer’s – without qualification – is “terminal” in a broad or loose sense, but perhaps not in a technical sense. But, late-stage Alzheimer’s is likely terminal in both a broad sense and in the narrow (or strict) sense.

A Philosophical Footnote

Necessary Vs. Sufficient Conditions

To be more thorough about things, we should probably make a distinction between a necessary and a sufficient condition. You didn’t think you were going to have a philosophy lesson today, did you?

A necessary condition for something is a condition that has to be there for that something to exist. Consider the so-called “fire triangle.” If you have a fire, then you have oxygen present. Oxygen has to be present for you to have a fire. So, oxygen is necessary for a fire.

Similarly, being incurable seems like it’s a necessary condition for a disease to be terminal. Pneumonia isn’t, per se, incurable. Even though a lot of people die from pneumonia, having pneumonia isn’t a death sentence –all things being equal. I had pneumonia when I was twelve years old. I survived. Even my dad had pneumonia when he was 83 and in a nursing home with Alzheimer’s. He survived.

At the same time, being incurable isn’t – by itself – a reason to think that a disease is terminal. If incurability by itself were enough to classify a disease as terminal, then we would say that incurability was a sufficient condition for a disease being terminal.

Consider fires, again. Even though oxygen is necessary for fire, it isn’t sufficient. You don’t automatically get a fire whenever and wherever there is oxygen. You need some other stuff (like a fuel supply and a spark). On the other hand, think of cooking eggs. You can fry, poach, or scramble eggs. Any of these methods is sufficient to “cook” eggs. If you have fried eggs, then you have cooked eggs. You don’t need to do anything else other than fry an egg to get it cooked.

Herpes simplex viruses aren’t curable. According to the received medical opinions, if you contract herpes, you’ll have herpes for the rest of your life. It can be controlled, but it cannot be corrected, remedied, or reversed in any straightforward way. But, herpes isn’t “terminal.”

This shows that even though it is necessary, incurability isn’t sufficient for a disease to be terminal. Incurability is to terminal illness as oxygen is to fires.

For Related Information, see:

“How Does a Person Actually Die From Alzheimer’s Dementia?”

Disclaimer

I have repeatedly noted on this website, and I will say again, that I am not a doctor. I cannot give medical advice. The information in the post, and on ALZHEIMERSPROOF.com, is simply a collection of what I have come to believe — through personal experience and research. Although I present the information in good faith, I do not warrant that it is true.

According to several sources, Alzheimer’s ranks in the top ten (non-homicidal) causes of death, nationwide. The Centers for Disease Control and Prevention states that it’s number six,[1] behind heart disease (1), cancer (2), accidents (3), chronic respiratory diseases (4), and strokes (5). But, with these other conditions, the cause of death seems fairly intuitive – the heart stops (heart disease), a person cannot breathe correctly (lung disease), etc. What kills you when you have Alzheimer’s? There are basically three sets of possibilities.

When an Alzheimer’s-afflicted person passes away, most of the time, he or she dies from various conditions – such as blood clots, pneumonia, sepsis, etc. – that arise as complications to the Alzheimer’s. However, it is possible for a person to die from Alzheimer’s more directly, as when a person’s brain no longer supports crucial abilities like breathing air or swallowing food. Still others die from things like cancer, heart disease, or kidney problems that they happen to also have, but which have no express relationship to their dementia.

Alzheimer’s Disease is similar in some respects to (the received view on) Human Immunodeficiency Virus (HIV). When it comes to HIV, a person dies from “opportunistic infections,” after the HIV progresses into full-blown Acquired Immune Deficiency Syndrome (AIDS). A person with compromised immunity has, by definition, a severed diminished capacity for fighting off diseases and infections.

Similarly, many people won’t die from “Alzheimer’s” per se, but from the sorts of secondary conditions previously mentioned.

What Is Alzheimer’s?

This is not the place for an extended discussion of Alzheimer’s Disease. There are numerous resources online where interested readers can find this sort of information. (For ALZHEIMERSPROOF’s overview of the relevant condition, see HERE.)

However, it does seem appropriate to give a brief description. After all, Alzheimer’s (along with other forms of dementia) is a progressive condition. This mean, of course, that a patient gets worse over time.

The basic thing that happens to an Alzheimer’s-affected person is that his or her brain develops various “plaques” and “tangles.” These are proteins that have gone haywire and that negatively impact the brain’s ability to interface with the nervous system and the rest of the body.

Initially, the disease causes confusion along with emotional and personality changes. The memory deteriorates, and people lose high-level faculties such as reasoning and speech. Eventually, persons with dementia may “forget how,” or otherwise lose their abilities to, perform basic, life-sustaining functions. As the disease advances, sufferers begin to lose even low-level faculties, such as the ability to blink, to walk and, later, to register emotion, to swallow food and water, or even to breathe, cough, or sneeze.

Without these essential capabilities, Alzheimer’s sufferers are unable to clear debris, food, mucus, and so on from their airways. Ultimately, vital life functions simply slow down, then cease, due to decreased brain activity.

From onset to death, Alzheimer’s may last anywhere from four to fifteen years. From my research, common estimates range from six to eight years. But these are just rough figures. Every family’s experience is unique.

3 Stages of Alzheimer’s Disease Progression

1. Early Stage – Characterized by a Person Having Subtle Behavioral Changes and Difficulty Recalling Newly Learning Information.
2. Middle Stage – The Sufferer Displays More Pronounced Emotional Changes, Stemming From Increased Confusion and Disorientation, as Well as Decreased Language, Locomotive, and Memory Faculties.
3. Late Stage – The Patient Loses All (or Almost All) Abilities to Move and Express Themselves. Ultimately, the Alzheimer’s-Affected Individual Is Unable to Perform Even Automatic Processes Like Breathing, Swallowing Food and Water, etc.

Is Alzheimer’s a ‘Terminal Illness’?

This question has a fair amount of subtlety. I have treated it at greater length HERE. But, suffice it to say that there are broad and narrow conceptions for what a “terminal illness” is.

On the broad conception, a terminal illness is merely one that reduces your life expectancy and that you will you will have at the time of your death. Alzheimer’s surely fits this general description.

On the narrow definition, a terminal illness is one that you are expected to die from very soon – maybe within twelve or twenty-four months. A person recently diagnosed with mild-cognitive impairment or early-stage Alzheimer’s may have eight to ten years to live. So, on this narrow definition, “Alzheimer’s” – by itself – may not be a terminal illness. However, we could say that late-stage Alzheimer’s could plausibly be construed as a terminal illness. Because, by the time a person enters Alzheimer’s advanced, end, or late stage, it may well be that their life expectancy has been reduced to one or two years.

For a more in-depth discussion of this issue, click HERE.

What Are Some Complications?

At some point, virtually all Alzheimer’s patients will have problems eating. They may stop eating entirely. This straightforwardly leads to malnutrition, weakness, weight loss, and starvation.

As mentioned, above, many Alzheimer’s-afflicted individuals lose the ability to walk. This general immobility leaves the person variously bedridden or wheelchair bound. Normal-functioning people may be at greater risk for health problems when they lead a sedentary lifestyle. But to be more or less completely stationary is much worse. Being motionless in this way can lead to bed sores (which, untreated, can get infected) and blot clots (which can be very serious, especially if they travel to the heart, lungs, etc.).

In advanced stages, the brain degenerates to the point where it is unable to properly regulate the body.[2] This irregularity can precipitate all sorts of problems, including weakened immunity.

“Aspiration” occurs when a person accidentally inhales bits of food or drops of water. These then end up in the lungs. Without the ability to expel these foreign materials by coughing or sneezing, the individual is at great risk for infections and pneumonia.

Moreover, immune-compromised persons are more susceptible to infections and can develop serious conditions like sepsis.

What Goes on, Medically?

Medically, what goes on depends on which of the three possibilities obtains.

Suppose that the Alzheimer’s patient passes from a secondary condition. Then the medical cause of death will depend on the particulars of that condition. So, suppose that an immobile Alzheimer’s patient develops a blood clot in his or her calf. Doctors will try to treat the clot by using blood thinners. But, if the clot breaks loose a person can die any or three ways. Firstly, the clot could block an artery. This may happen any number of places, but it is most dangerous around the lungs. Called a “pulmonary embolism,” a blood clot near the lungs can cut off oxygen to the body and brain. Secondly, the clot could cause the person to go into cardiac arrest. If the clot passages into the heart, the heart’s pumping may become erratic and fatal arrhythmias may develop. Thirdly, the clot could go towards the brain, block an artery there, and cause a fatal stroke.

If a person develops pneumonia, then the main risk is that of infection. Pneumonia is characterized by a person’s having “fluid-filled” sacs in the lungs. In the first place, the fluid impedes the lung’s ability to pass oxygen into the blood stream. But the fluid is also a breeding ground for bacteria. This bacteria can make its way into the blood, travel around to other organs, and cause a massive, whole-body infection that a person is unlikely to recover from.

Suppose, instead, that the individual dies from an unrelated condition. Of course, most people suffering from Alzheimer’s Disease are aged. In virtue of this fact alone, a person who has Alzheimer’s might also have other heath problems, such as cancers of various kinds, heart disease, kidney disease, and so on. If an Alzheimer’s-afflicted person dies from one of these unrelated conditions, then their cause of death will be identical to the cause in a non-Alzheimer’s-affected person who died of the same condition. To put it differently, if a person dies from something like a heart attack, then the fact that a person also has Alzheimer’s has no medical effect on the cause of death in that case.[3]

Finally, suppose that a person expires in late stage, when they lose abilities like breathing or swallowing food and water. In this, final set of cases, the lost abilities (e.g., swallowing water) virtually ensure that the person’s body systems will being to “shut down.” Without proper hydration, kidney failure will ensue. Without proper oxygenation, the body and brain tissue will die.

None of these descriptions paint a happy picture, I realize. My sympathies are with you and your family. The best that I can say is that I can appreciate what you’re going through, since my family went through something of the same thing.

What Was My Experience With My Dad?

As I have shared in other places (see HERE), my dad, Jim, had Alzheimer’s for about ten years. In retrospect, his doctors led us to believe that he had been suffering through early stages of the disease before it was recognized for what it was. During that period of uncertainty, I attributed his attitude and behavioral changes to his becoming crotchety and temperamental.

But, most relevantly, he was diagnosed with arterial blockages and colon cancer. We nursed him through a triple bypass operation and a colectomy. I say that to mention this: For his age, my dad was otherwise physically healthy when his Alzheimer’s was finally diagnosed.

When he underwent heart surgery, he was literally at death’s door, and he could have expired at any moment. But having had the two surgical interventions, he lived through a full progression of the various stages of his dementia.

We noticed (of course) the locomotive and speech degeneration that is typical of Alzheimer’s. Indeed, there were several episodes when he developed blood clots, pneumonia, and urinary-tract infections. He contracted a severe respiratory virus at least once and had a gastro-intestinal bug on another occasion. Any of these events could have resulted in his death. And Jim came close to dying during a few of them.

But, he didn’t.

He held on. He came back.

He went into hospice care at least five times. And four times recovered enough to go off hospice.[4]

By the end, Jim was unable to move at all. He just lay on his back, staring off into space with increasingly cold and distant eyes.

Whereas I (and my mom and sister) had expected him to die from some complication, in the end, he seemed to die from the effects of the brain deterioration.

He was unable to swallow – either food or water. And he struggled to breathe. Jim would take a couple of breaths and then he would give a low-volume gasp – almost like a person taking a deep breath. And then he wouldn’t make any sound for a few seconds before another raspy breath would escape and the process would repeat.

He lasted in this state for about ten days.

I remember sitting at his bedside, expecting period of silence to be “it.” He persisted.

I recall asking a hospice nurse how long a person could go without food or water. She stated that everyone was different. She had seen some people hang on for a day or so. Another might take a week. According to her, one person had gone nearly a month.

This was exasperating news.

We felt that he might be “waiting” for something. We told him it was all right go. We arranged for various rituals to be performed, according to his religious tradition. But still his condition remained more or less unchanged.

Though, Jim’s toes began to turn blue.

Finally, my sister and her family were able to make arrangements and began to make their way by car. I didn’t really think they would come in time. My mom and I took turns rubbing my dad’s feet to help them return to a healthier color.

It took my sister and her family around fifteen hours to arrive. When she came into the room, she walked around his bed to position herself in front of him. Remarkably, he turned a bit and his mouth moved as if he had something to say. No sound came out. But he had been entirely motionless until then.

Nothing happened immediately. We all sat with him for several hours, discussing what to do.

I ended up staying with him that night. My mom and sister came to relieve me in the morning. I went home to spend time with my two sons and to rest, expecting to have to spend another night with my dad.

But it was not to be.

My sister called me at 1:15 pm to let me know that my dad had died. I remember groaning, “Oh, no.” My first thought was that I had been glued to my dad for the past week because I wanted to be there when it happened.

My reassured me by saying, “No; that is a good thing.” And I realized that my desire to be there was self-centered. If I had been a comfort to my dad, then that is what really mattered.

My sister related that she and my mom had not been in the room when it occurred. Everyone had stepped out to allow a cleaning person to tidy up. Some observers have commented that Jim passed while he had a moment of privacy.

For more on Jim’s story, read my account, HERE.

3 Ways to Die – Summarized

1. Alzheimer’s Causes a Fatal Secondary Condition (E.g., a blood clot or pneumonia, etc.)
2. The Alzheimer’s Patient Also Has Some Other, Unrelated Condition (E.g., cancer or heart disease, etc.) and He or She Dies From That
3. Alzheimer’s Disease Runs to Its Advanced Stage Where a Person Loses Life-Sustaining Functions (E.g., breathing and swallowing food) and the Person Basically Suffocates or Starves

Notes:

[1] There are some subtleties, here. A number of writers worry that the number of Alzheimer’s-related deaths are underreported, due perhaps to the fact that an Alzheimer’s sufferer often develops complications. So, if a person with Alzheimer’s contracts and dies from pneumonia (for more on which, see further along in the main text), the medical examiner may report the death as a due to pneumonia, rather than to Alzheimer’s. On the other side of things, it may be that the number of Alzheimer’s deaths is overreported. Some authorities maintain that the only sure-fire way to verify that a person’s condition is actually Alzheimer’s – as opposed to some other sort of dementia or condition – is to perform an autopsy. However, it may be that may people whose death certificates read “Alzheimer’s” have only had a physician’s diagnosis of the condition and never underwent a postmortem examination.

[2] It fails to maintain “homeostasis.”

[3] True, there might be other, non-medical factors. For example, if a person with Alzheimer’s begins having chest pains, he or she may not have the presence of mind or the ability to report this. These inabilities might raise the probability that an Alzheimer’s sufferer will die from the heart attack – whereas a non-Alzheimer’s sufferer might survive, if he or she can call for help, pop an aspirin, etc.

[4] When a person goes into a nursing home, their vital statistics (like height, weight, food intakes, etc.) are recorded. Our experience with hospice was that when my dad fell below – by some degree or other – his “baseline” statistics, he would qualify to go on hospice care. But whenever he regained his weight and appetite, he would be reentered into the general population.

Disclaimer

I have repeatedly noted on this website, and I will say again, that I am not a doctor. I cannot give medical advice. The information in the post, and on ALZHEIMERSPROOF.com, is simply a collection of what I have come to believe — through personal experience and research. Although I present the information in good faith, I do not warrant that it is true.

Alzheimer’s Holiday & Travel Tips

If they’re anything, holidays are characterized by a departure from routine. For cognitively healthy individuals, this is often a welcome departure, providing much needed respite from the tedium or repetition of the daily grind. But the thing that makes holidays so enjoyable for many people is the very thing that can agitate and confuse a person with dementia. The predictability of a daily routine often provides comfort and stability to cognitively impaired persons. When the routine is interrupted or suspended the result can be quite upsetting for the Alzheimer’s sufferer. This may prompt, well… let’s just call it “challenging” behavior.  In turn, this becomes a source of frustration for the caregiver.

Additionally, the so-called “holiday blues” can especially affect those who are directly experiencing the loss of their mental faculties. This can make an Alzheimer’s-afflicted person more difficult to work with. In turn, caretakers and family members can experience additional stress.

But, as tempting as it may be at first blush, “skipping” the holidays or wishing them away is neither practical nor healthy. There are some strategies that you can implement to make things a little more manageable. Here are some things to think about.

The Stage Makes a Lot of Difference

Recall that Alzheimer’s Disease progresses in stages. (For a brief overview, see HERE.) One of the simplest ways, but by no means the only way, to think of these stages is in terms of the condition being “early,” “middle,” or “late/advanced.”

On this threefold picture, people in the earliest stage of the disease go through only subtle – and sometimes hardly perceptible – changes. Intuitively, as the condition continues, the afflicted person will exhibit more pronounced changes. Of course, by late stage, the transformation will be radical – on many levels.

In my dad’s case (read Jim’s story, HERE), he quickly became more withdrawn and irritable than he had been before. He had always been a social person. In fact, he was often the proverbial life of the party. In retrospect, my best guess is that he became angrier as his frustration with his impairments increased. Similarly, it appeared that he simply became uncomfortable around other people – possibly due to self-consciousness over his mental decline.

As his condition advanced, he mellowed out a bit. This was probably in no small part due to the medicines that he was taking. (For a primer on the main Alzheimer’s pharmaceuticals, click HERE.)

Now, what happened to Jim may not happen to everyone.[1] Alzheimer’s may manifest differently in various people, depending upon what parts of their brain are most affected. As opposed to withdrawing, some people may continue to appreciate social interactions. But it’s probably a good practice to assume that your loved one’s social habits might change, and at least plan accordingly.

Everyone’s situation is different. So, remember that these are intended to be general tips. To fine tune your own plan, solicit the advice of those – like your family physician – who know your situation more intimately.

11 General Tips

There are several basic things that caregivers should do. So, relax, take a deep breath, and peruse the first list.

1. Plan

You’re probably thinking: “Duh.” Personally, I have to constantly remind myself to do this – despite knowing that it is a good habit. In the context of caring for a person with dementia, I am mindful of the saying: “If you want to make God laugh, tell him your plans.” True enough: Plans may be derailed. You have to be flexible. At the same time, failing to plan is often tantamount to planning to fail. So, even though it’s a bit tedious and anxiety-riddled, try to map out your holiday adventures. With Alzheimer’s, sadly, it’s often a “hope for the best, plan for the worst” type of situation. But, scheduling activities can give you a sense of control and, more importantly, it can help you foresee – and plan for – emotional and physical challenges.

Plan activities that the Alzheimer’s suffer can participate in. For example, especially in early and earl-middle stages, dementia patients are usually able to help with simple baking or decorating tasks.

2. Have Contingency Plans

Am I repeating myself? And I am only on suggestion #2! But, seriously, it’s probably best to over-plan. Have a place for your loved one to go if he or she gets fatigued with the visitors. Have a strategy for how you will deal with stress. Have an activity for him or her to do if the nice dinner party you arranged goes sideways. And so on.

3. Maintain Your Composure

Have I already upset you? Well, there’s more where that came from! But, seriously, you’ll need to remember – as I have to – to be patient! Be patient with grandpa or mom when they can’t remember why there are decorations everywhere. Be patient when they start putting things away that you set out on purpose. Be patient when they act out and say that they don’t feel like receiving visitors. Arguing is worse than useless. Not only will it fail to change your loved one’s mind. But it will leave all parties feeling embittered.

(Say it with me: A person who is cognitively impaired simply cannot reason reliably. That is what it means to be cognitively impaired! Regardless of how good your arguments are, they will never convince. And even if they did convince, sadly, the conclusions are likely to be quickly forgotten.)

4. Take Time for Yourself

How can you be expected to maintain your composure? Good question. It’s great, in fact. I have taken a lesson from a bit of low-level disaster preparation. One of the first things the flight attendants advise on airplanes is that, in the event of an emergency, adults should secure their oxygen masks first. Only afterwards should they place the masks on their children. The reason, clearly, is that the caretaker is only useful if he or she takes care of him- or herself first.

One aspect of this is self-awareness. Admit it to yourself when you feel sad or angry. These are normal reactions to your situation. Hiding these feelings will not serve any good purpose. However, you should try to deal with and keep them under control. See a counselor or therapist yourself, if helpful.

Maintain your own wellbeing and you really will be better positioned to care for your loved one – and to enjoy the holidays. So, start your morning off with a little exercise – and a little more coffee, if that is your taste. Pray or meditate. Then, as the day progresses, schedule breaks for yourself. Finally, conclude a busy day with some decompression activities – even if that is just “vegging out” on a couch, or soaking in a bath tub with a glass of red wine.

5. Arrange for Help

Of course, being able to take periodic breaks depends upon having relief for necessary tasks like supervising the Alzheimer’s patient. Holidays are often characterized by family get togethers. And, thankfully, some of the people present may even be in a more generous mood than they usually are. And they may be off work. Take advantage and just ask for some help with grandma or mom.

If there is no one able – or willing – to help out, then look into “respite care” services.[2] There is usually some way for you to get in some quality alone time without neglecting your loved one.

6. Stage ‘Holiday Practices’

This is partially for the Alzheimer’s sufferer. It may be advisable to get him or her “ready” for the holiday by trying to prepare them for (or remind them) what they will experience. The energy you expend should partially depend on the stage of the disease and, more specifically, how much you expect your loved one to get out of the exercises. You might simply present them with photographs of the people you plan on interacting with. Strolls down memory lane are often fun for Alzheimer’s sufferers anyway.

If you think it might help – or might be fun – you might also try doing “trial runs” of some of the holiday-related activities.

But the exercise is also partly for the caretakers and family members. Because of the disease’s changes, you have got to recognize that things may not be like “old times.” This is unavoidable. There is no need to make things worse by trying to recreate memories or experiences from your past. The envisioned holiday “practice” may give you a better understanding of what the upcoming events may be like.

7. Prepare Others

On the flipside, you will also want to be honest and upfront with family members (or friends) regarding the Alzheimer’s patient’s condition. A phone call or text message should suffice.

Keep things basic. Start by sketching a few generalities. People with Alzheimer’s or other forms of dementia may still take pleasure in holiday events – and visitors. A key is to keep things comforting and manageable. Alzheimer’s sufferers can be easily confused and overwhelmed.

Then outline a few of the pertinent specifics. Just let people know the things that they need to be made aware of concerning your love one’s situation. Briefly summarize some of the most obvious behavioral and personality changes. Prepare family and friends for the fact that, due to decreased memory function, they may not be recognized by the Alzheimer’s sufferer. But hasten to add that their company is still requested and that their love and support are still valued.

Additionally, let people know that they can still feel free to “be themselves” around Alzheimer’s-afflicted individuals. In fact, this is encouraged because it may stimulate latent memories in the sufferer. Be yourself; just don’t be overly boisterous or overwhelming. Note to planner: If someone’s “being themselves” would be highly disturbing, then consider skipping that person’s invitation this year – or inviting them to a different event.

Discuss your holiday expectations, plans, and requirements relatives ahead of time. Be forthright about any odd mannerisms or quirks that may have surfaced since last they met, as well as – and this is important – about any “triggers” that might set off your loved one’s poor behaviors. Try to schedule things so as to maintain as regular a routine as possible for your loved one. This may require shifting the order of events, or perhaps substituting a holiday lunch for what had been planned as a holiday dinner. You may even want to keep entirely to your loved one’s regular daily routine and merely schedule short visits from family or friends.

Again, a key is to remain calm and flexible. Let visitors know that they will probably have to limit their time with the Alzheimer’s sufferer. Apprise people of any communication difficulties. And provide some sort of “code word” that can be invoked in the event that visiting time has to be cut short.

8. Know Your Environment

Alzheimer’s patients generally have marked diminished cognitive capacities. They are prone to wandering and may get into things that are unsafe for them. It is generally not advisable to take the patient into an unknown environment. Instead, it is probably best to keep the Alzheimer’s sufferer in a place that is well familiar and to let people come visit him or her. Even, here, however, do not let your guard down. It is easy to discover that the removal of a barricade or lock (taken down to make visitors feel more comfortable) has left a weakness in your home’s Alzheimer’s-proofing. This can lead to dangerous situations, for example, if grandma or dad get into a restricted area or fall on a usually off-limits staircase.

Beyond safety, however, there is also comprehensibility to consider. To put it differently, if you seat your loved one in a corner, he or she is unlikely to be able to follow the dinner conversation – even if the topic is inherently within his or her ken. Position your loved one so as to maximize his or her interaction and minimize distractions.

Always have emergency-contact numbers (including clinics, doctors, emergency rooms, hospitals, etc.) and medication lists on hand. Finally, arrange for there to be a “respite” room for caretakers and a “quiet” room for the patient, when people find themselves at saturation, stress-wise.

9. Make the Event(s) Familiar

Nothing can be quite as disconcerting to an Alzheimer’s-afflicted individual as the unfamiliar. This puts the holiday planner in a bind, since the holidays are times for departing from the usual. But, if you can tether the holiday events to recognizable things, your loved one is likely to respond better than they would if their world suddenly turns topsy-turvy.

You could hang familiar photographs. You could display familiar decorations – perhaps ornaments that had some sentimental value. If dad or grandma has some dish that he or she likes, try serving that. Use music to your advantage by playing recordings from the person’s past (and in line with his or her tastes).[3] Keep the “KISS” principle in mind: Keep It Simple, “Stupid.” Have visitors engage in simple activities – like arts & crafts – with the Alzheimer’s sufferer.

Above all, try to keep to your loved one’s schedule as much as possible. Do not impel a person with dementia to rise earlier, or stay awake later, than usual. And, don’t skip the naptimes!

10. Make the Event(s) Simple

Like others on this list, this tip pertains both to Alzheimer’s sufferers and to their caretakers. You don’t want the holiday events to be overwhelming for anyone. For the dementia-afflicted person, less can be more. And you have to honestly think through your own ability to plan a holiday event in the face of all the other caregiving responsibilities that you now have. Don’t bit off more than you can chew. If your house has always been the go-to place for far-flung family members, maybe you want to consider hosting a more modest event. Instead of preparing multiple-course meals for visitors, think about asking people to bring dishes.

11. Consider avoiding alcohol

I was tempted to exclude this, or at least bury it in the middle of a more general suggestion. But I feel that it is an important consideration and worth singling out. Alcohol can make an Alzheimer’s-afflicted person’s behavior even worse than it tends to be already. A person with dementia already has impaired judgment. Alcohol would just throw gasoline (or, alcohol, I guess) on that fire. To put it somewhat colorfully, alcohol may not “mix well” with dementia.

Moreover, drinking might put the caretakers in compromised positions. Being under the influence – even if only a little bit – might undermine your ability to watch out for grandpa’s or mom’s wellbeing.

Additionally, and more seriously, it could be contraindicated in conjunction with certain pharmaceuticals. There may be negative (or even severe) interactions with various medications.

Beyond all of this, however, it can put negative social pressure on the person. Your loved one may still want to feel “included” in holiday goings on. If everyone else is partaking, then he or she may want to partake – especially if they did so in years past. And it may be no use to reason with the person about the finer points of their care plan. The bottom line is that dad or grandma may feel excluded.

I don’t want to rain (or snow) on, or otherwise water down, your holiday parade. But I encourage you to just be safe, wise, charitable, and – yes – inclusive in your drink selections. This could be as simple as substituting grape juice for red wine.

Travel Tips

• Avoid Travel (If Possible); Else, Travel (Extra-) Carefully

Here, I want to paraphrase a well-known line from Arthur Conan Doyle’s famous detective, Sherlock Holmes. He once wrote to his companion, Dr. John Watson: “Come at once if convenient. If inconvenient, come all the same.”

I am tempted to advise: “If it’s convenient, avoid travel. If inconvenient, avoid it all the same.”

Traveling is that difficult. But… If traveling is unavoidable (really, truly, seriously unavoidable), then try the following.

• Get medical clearance

Of course, before embarking on any journey, you should consult your loved one’s physician. The doctor can at least give you a “green light” from the standpoint of physical wellbeing. If traveling – whether by airplane or by car – might prove injurious, you’ll want to know this ahead of time.

• Don’t leave your loved one alone!

This is perhaps the most important. It probably goes without saying. But I wouldn’t be able to sleep without at least registering it. Make sure somebody is watching out at all times. (It should be someone who is somewhat acquainted with the Alzheimer’s sufferer and knows about their needs and medication regiment.) Enough said.

• Give Yourself Plenty of Time

This is probably the most obvious. But it’s also one of the most difficult. Remember that you’re not just trying to arrive in a timely manner, you’re trying to travel in a way that is least disruptive to your loved one’s routine. You’ll need extra time to maintain consistency with the Alzheimer’s sufferer’s schedule.

Moreover, you’ll need extra time for decision-making. Keep in mind that many travel-related decisions become harder to make when you must transport an Alzheimer’s sufferer. For instance, it is often difficult under the best conditions to iron out the number of planned stops. But it’s worse where there is a dementia patient involved. On the one hand, you want to give your loved one breaks from the travel. On the other hand, however, every new environment has the potential to precipitate anxiety and confusion.

Similarly, deciding upon target departure and arrival times gets tricky. On the one hand, you may want to avoid (predictable) traffic. On the other hand, travel times that are favorable from a traffic standpoint may be unfavorable from the standpoint of daily routine. Having to awaken early or arrive late might do significant damage to your loved one’s regular sleeping and eating routine.

• Carry an emergency road kit

This should contain all the usual, first-aid essentials (band aids, pain killers, space blankets, etc.). But it should also contain Alzheimer’s-specific items. Perhaps you’ll carry games or other things to distract your loved one if necessary. You may need a CD with a particular piece of music, to calm mom or grandpa down if he or she gets agitated.

Use familiar modes of transportation and avoid peak travel times.

• Know your surroundings

If you’re traveling, make sure that you know emergency contact information and location of local medical centers. This is easier with the advent of travel aids such as Google Maps. All you have to do is click “search for nearby businesses” and you should be able to locate the facilities that you need.

If…you have mobile service.

I think it would be worth the extra time to collect old-fashioned paper maps. Bring them along and mark the locations of places like hospitals. Ideally, at any point on the trip, you should know (roughly) how close you are to the nearest emergency center. I realize that this is a tall order. But, if an emergency did arise, you will be glad that you put in the extra work.

• Let others know you’re traveling with someone who has Alzheimer’s

If you have to stay at a hotel overnight, apprise the staff know about your loved one’s condition. When you need to stop at diners or filling stations, let the attendants know.

One of the easiest ways to do this is by presenting workers with “business cards” that merely read (something like): “My companion is suffering from Alzheimer’s Disease.”

• Prepare stopover points

Again, if you find yourself in the position of having to stay at a hotel, then ensure beforehand that you and your loved one will have necessary items on hand. For example, it’s best to make reservations and to request mobility aids (or make other special requests) in advance of arrival. Think through what you require, and try to arrange for it to be available.

• Prepare the Destination Environment

If you have thoroughly (or at least adequately) Alzheimer’s-proofed your loved one’s house, then you know that there are dangers lurking around almost every corner. It may be unlikely that your destination has been as well prepared as your own home. Odds are, if you are the day-to-day caretaker, then you are going to be much more of an Alzheimer’s-proofing expert than your host.  Go with your gut, and don’t be afraid to request that (reasonable and feasible) changes be made to the environment.

(If needed, review the Five-part “Ultimate Guide to Alzheimer’s-Proofing a Home”: Part 1 – Master List; Part 2 – Senior Safety; Part 3 – Alzheimer’s Tips; Part 4 – Kitchens & Baths; Part 5 – Indoors & Outdoors.)

However, just as a “refresher,” here are a few things that really need to be done in order to ensure the Alzheimer’s sufferer’s minimal safety.

You need to make sure that there are clear walking paths, wide enough to maneuver walkers or wheelchairs (if applicable). Restrict access to dangerous spots in the house (basements, bathrooms, garages, kitchens, staircases, etc.). Watch the temperature of the water heater – and of the coffee.

Holiday lighting can be beautiful and festival, but it can also be discombobulating. Keep confounding lighting displays switched off, or out of sight.

In many ways, Alzheimer’s proofing is like childproofing. (For a primer, see HERE.) Keep decorations familiar (see above) and keep flames (e.g., candles and fireplaces) away from Alzheimer’s patients. Always be prepared for emergency responders by maintaining an up-to-date medication list.

• Other considerations

Make sure that you have planned to provide constant supervision at your destination and that you have arranged for any necessary mobility aids (like canes, walkers, wheelchairs, etc.) to be transported or to be available at the anticipated time of your arrival. Finally, if you have an “alert” bracelet, then bring it!

Gift-Giving Tips

For many people, holiday parties wouldn’t be complete without gift giving. Additionally, many people feel obligated to purchase gifts when they are invited to events. In and of itself, this is hardly bad. And gift exchanging can certainly enrich the experiences and memories. But there are pitfalls.

Alzheimer’s patients – and other dementia sufferers – can harm themselves easily. Particular gifts, like hand tools and knives (or various “crafting” supplies) might pose dangers for your loved one. These gifts may be especially tempting for family members or friends to buy, since your loved one may have used them readily prior to his or her impairment.[4]

Instead, and at least, request that anyone feeling compelled to give gifts stick to items that are safe. Clothing is probably the old standby. Alternatives include musical recordings, video recordings (whether of commercial films or, more personally, home movies), and simple puzzles.

These sorts of gifts are innocuous. However, if a relative wishes to give something of practical use, then steer the would-be gifter to things like medical-alert devices, GPS-tracking watches, and various Alzheimer’s-proofing gadgets for the home or vehicle.

Of course, there is no reason that money has to be spent during the holidays. The “reason for the season” is most assuredly not going into debt. Therefore, consider homemade gifts such as artwork (simple drawings or paintings, for example), baked goods (like brownies, cakes, cookies, etc.), or other handicrafts (like bracelets, ornaments, and so on).

Communication Tips

When it comes to Alzheimer’s, communication is always a challenge. The Alzheimer’s Association has a great article breaking communication tips down according to the stage your love one is in. Interested readers should definitely check it out. But here are some highlights.

• Ask yes-or-no questions
• Avoid negativity or “talking down”
• Be positive and affectionate
• Be patient – Alzheimer’s sufferers often repeat themselves
• Be ready – and willing – to repeat yourself
• Don’t argue!
• Eliminate background noises
• Give them plenty of time to think
• Help your loved one by suggesting words
• Provide visual cues when appropriate
• Remain calm
• Remind the person of happy memories
• Smile!
• Speak clearly and slowly
• Try not to ask, “Don’t you remember?” – he or she doesn’t!
• Uphold the person’s dignity and self-worth
• Use a soothing tone of voice
• Use your loved one’s name when addressing them
• Use your own name when approaching them[5]

Here are some final considerations. Don’t leave the afflicted person out of family events or conversations. They will feel alienated. Don’t take it personally if you are not recognized or understood. And try to pick up on indications that your loved one is becoming agitated or confused. If necessary, change the subject or “redirect” the person towards a calming activity.

Final Thoughts

Celebrating with an Alzheimer’s-afflicted person is not easy – for any involved. It’s hard not to wish for happier times. But, then again, you might find that times can be as happy as you let them be, or as happy as you make them.

Happy holidays.

Sources:

Alzheimer’s Association[6]

National Institute on Aging (U.S.)[7]

Notes:

[1] There are some things that may be assumed to apply, on the balance of probability. For instance, it is often the case that Alzheimer’s sufferers do better recalling older memories than they do forming or remembering newer ones. But, when it comes to degenerative brain diseases, one can never be entirely sure.

[2] You may also want to brace yourself for the so-called “post-holiday blues.”

[3] Keep in mind that Alzheimer’s-afflicted persons can appreciate – and benefit from – music even when, in advanced stages of Alzheimer’s, most of their other faculties have gone. (Read more about the therapeutic effects of music, HERE.)

[4] This is yet another reason to give your relatives advance notice concerning – and an accurate summary of – your loved one’s condition. See, again, the relevant section, above.

[5] Some advisers literally recommend introducing yourself with statements like the following. “Hi, mom! It’s John, your son.”

[6] See, for example, the Alzheimer’s Association publication on the holidays, HERE.

[7] See “Holiday Hints for Alzheimer’s Caregivers,” National Institute of Health, <https://www.nia.nih.gov/health/holiday-hints-alzheimers-caregivers>.

Preliminary Comments

Information is empowering. I cannot overstate the importance of being informed about your – or your loved one’s – condition and care. However, in order to relate effectively with attorneys, doctors (and other health professionals), you have to ask questions. This article is designed to get you started thinking through questions.

Caveat: Treatment plans should evolve as the disease runs its course. Therefore, the care plan ought not be handled in a set-it-and-forget-it manner. You, as patient (notwithstanding your cognitive limitations) or caregiver (to the best of your ability), have an obligation to inform yourself about the available treatment options. Each option has its own attendant cost/benefit analysis.

Doctor Factors

Finding a Doctor

Far be it from me to suggest that you abandon your trusted, family physician after a diagnosis of Alzheimer’s. However, it is worth considering whether your (or your loved one’s) interests would be better served by going elsewhere for professional advice than by staying with a longtime doc.

Much depends on your doctor’s specific experience and expertise, as well as on the important question of how well all the relevant parties get along.

Some questions to consider include:

How much experience do you have diagnosing and treating patients with Alzheimer’s or other forms of dementia?

This is your (or your loved one’s) life we’re talking about. It is certainly in your interest to try to ensure that you have the most competent care provider that you can afford. Ask your doctor questions. Remember who is working for whom.

Would you be my (or my loved one’s) principal healthcare provider as the disease progresses? Or will I (or my loved one) have to segue into more specialized care at particular diagnostic benchmarks?

If a later change is likely, would it be better to make the change now? Would the change be more or less traumatic as the patient declines? At the very least, you will want to know if you (or your loved one) should consult with a specialist. Conventional specialists may include occupational therapists, speech therapists, eye doctors, etc.

Are you focused mainly on conventional treatments, or are you open to (or even versed in) alternative approaches?

Realize that if you have different treatment “sensibilities” or values than your (or your loved one’s) doctor does, there could be friction. If you would like to consider possibilities for herbal/nutritional interventions, for instance, but your physician thinks that the sun rises and sets with pharmaceuticals, there may be additional tension during examinations at a time when things will probably be tense enough. I hasten to add that this can go both ways. Tension can also arise if you’re inclined to place your trust in modern, scientific advances, but your doctor keeps recommending dietary and other supplements. The moral might be: try to find a doctor with whom you have good rapport.

Visiting a Doctor

Once you have decided upon a physician – or, for that matter, as you are considering your choice – it’s best to have your own ducks in a row, information-wise.[1] For example, you’ll want to have the following on hand:

• Medication list (including any known bad reactions or side effects)
• Notebook (to record doctor’s instructions – and his or her answers to your questions)

Treatment-Plan Factors

It is unlikely that there is a one-size-fits-all solution. Ideally, treatment plans need to be individualized. There are several categories of modifying factors. Some have to do with the patient him- or herself.

Patient Factors

• Age
• Alzheimer’s stage
• Alzheimer’s symptoms
• Financial means
• General health
• Living situation (in a private house, assisted-living facility, nursing home, etc.)

Other factors pertain to the caregiver(s).

Caregiver Factors

• Age
• Availability and scheduling flexibility
• Financial means (and willingness to help)
• General health
• Living situation (living alone – with or without extra room; living with spouse or children; etc.)

Questions to Ask

For my general introduction to the condition, see here: “Alzheimer’s Disease: A Brief Overview.”

Disease: Questions Pertaining to Alzheimer’s Itself

Are you sure that I have (or my loved has) Alzheimer’s? For instance, have you ruled out the possibility that any relevant cognitive/memory problems are simply due to the aging process?

How much experience do you have diagnosing ailments of this sort? Treating Alzheimer’s patients?

What are the symptoms of Alzheimer’s?

What is the usual course of the disease?

What symptoms do I (or does my loved one) have that suggest this diagnosis?

Could these symptoms be caused by some other condition?

Do I (or does my loved one) have any symptoms that seem out of place or peculiar given this diagnosis?

What tests are capable of diagnosing Alzheimer’s? [For my summary of Alzheimer’s tests, see HERE.]

What tests are you relying upon? [For my summary of Alzheimer’s tests, see HERE.]

What stage of Alzheimer’s am I (or is my loved one) in?

What should we expect in terms of changes to sleep patterns? [See HERE and HERE.]

What’s the prognosis? How do you expect the disease to progress? Over how long of a period?

What will subsequent stages be like?

Will the Alzheimer’s negatively impact my (or my loved one’s) overall health? (Increase of dehydration, falling, urinary-tract infection, etc.)

Does Alzheimer’s impact life expectancy?

Is Alzheimer’s genetic or hereditary? [For my summary of Alzheimer’s tests, see HERE.]

Is there an “environmental” component? [For information on one doctor who thinks that Alzheimer’s might have dietary and other triggers, see HERE and HERE.]

Functionality: About Your (Or Your Loved One’s) Capabilities

How long can I (or my loved one) live independently or normally after receiving a diagnosis of Mild Cognitive Impairment or Alzheimer’s?

What can we do to prolong this independence for as long as possible?

Is an Alzheimer’s-afflicted individual a danger to him- or herself? To others?

Do Alzheimer’s sufferers have difficulty with the mechanics of eating?

Besides dietary changes that are made for nutritional reasons [See HERE and HERE], are there certain foods that should be avoided because they may be more likely to cause choking?

Can an Alzheimer’s sufferer take medications him- or herself?

Will I (or my loved one) require help with activities of daily living? Dressing? Eating? Transferring in and out of bed?

Is it legal and safe for me (or my loved one) to drive? Will it eventually be unsafe? How long? What are the signs of a driver who is becoming unsafe? Are periodic driving evaluations required?

[For more information, see ALZHEIMERSPROOF’s articles: “Is It Safe to Drive With Alzheimer’s?”; “Are Drivers With Alzheimer’s More Dangerous than Others?”; and “Is It Legal to Drive With Alzheimer’s Disease?.” And for our state-by-state resources, see: “U.S. Law Guide: Driving With Alzheimer’s.”

What can be done if a manifestly unsafe driver declines or refuses to stop driving? [See “How Do You Alzheimer’s Proof a Car?“]

Support: Regarding Varieties of Available Assistance

How do I tell family and friends about this diagnosis?

What’s expected the emotional effect of Alzheimer’s? On the patient? On family? Etc.

Is Alzheimer’s often associated with anxiety? Depression?

How can I manage my own (or my loved one’s) affective challenges?

Will the Alzheimer’s patient be easily agitated? Are there strategies for calming down a person with Alzheimer’s?

Are there any support groups or organizations in our area? For Alzheimer’s sufferers? For caretakers?

Where can I (or my caregiver) receive training?

What’s your advice for how to communicate as (or with) someone who is cognitively impaired? Are there words to use, or to avoid? How

How do I (or how does my caretaker) learn to check emotional reactions when the Alzheimer’s sufferer is uncontrollable?

Are there memory prompts that I can set up for myself (or for my loved one) at home?

What Alzheimer’s or senior services are available in the area?

Is there any financial aid available for needy families? [See the articles on long-term-care insurance and retiring happy, HERE and HERE.]

Besides medications (see further on), can you suggest any activities that might help to enhance, preserve, or otherwise prolong memories?

Apart from drugs (covered below), can you recommend any activities that can help bolster, conserve, or promote general reasoning abilities?

To put it differently, are there other relevant therapies for Alzheimer’s? Do you recommend that we investigate or pursue any of these?

Relatedly, would intellectual stimulation or physical exercise positively impact my (or my loved one’s) mental focus, health, thinking capabilities, etc.?

Should I consider getting home help, or segueing into an alternative living arrangement? [See, also, the question about custodial care under the subheading “Treatments: Concerning Recommended Interventions,” below.]

If we are going to remain in the home, what do I have to do to keep the house safe? Are there certain items that need to be hidden or removed? [See  my five-part series on Alzheimer’s proofing your house: Part 1, Part 2, Part 3, Part 4, and Part 5.]

Do the kitchens and bathrooms require special consideration? [See “How to Alzheimer’s Proof Your House: Kitchens and Bathrooms.”]

Treatments: Concerning Recommended Interventions

What are the available treatment options?

What option or options do you recommend?

On what is your recommendation based? (Alzheimer’s stage? General health concerns? Symptoms?)

If your recommendation is partially stage-relative, when should we expect your recommendation to change?

What pharmaceuticals do you recommend? [For ALZHEIMERSPROOF’s breakdown of common pharmaceutical interventions, see HERE.]

Do the drugs treat the disease itself, or its symptoms?

Do they slow the progression of the disease, or aim to cure it?

Will you periodically be testing my (or my loved one’s) cognition?

Are the medicines effective? Could the medications make the symptoms worse?

What positive results do you expect to see?

How long will we have to wait before we will see results?

How will you track the drug’s effectiveness?

What are the most common side effects? What side effects are most concerning?

Will you periodically check for side effects? Or will you reply on family reports? Or both?

When is it all right to call you? When should we definitely call you?

What sorts of emergencies might arise?

What should I keep in mind in case of an emergency? Who do I call?

Are these proposed pharmaceutical interventions likely complicate or give rise to other medical conditions?

Will the Alzheimer’s Disease affect how you care for other medical conditions?

Are any experimental or “new” treatments available? E.g., are there any clinical trials that I (or my loved one) might qualify for?

Can herbal (or other natural) supplements be helpful additions (or reasonable alternatives)? [For more information, see “6 Drugs That Treat Alzheimer’s and 20+ Natural Alternatives.” For related information, see HERE and HERE.]

Are there any non-drug treatments that you can recommend? [See, again, questions under the subheading “Support: Regarding Varieties of Available Assistance.”]

Do you have a recommendation for a care location? (At home, adult day care, assisted living, nursing home, etc.)

If at home, how can the family make the home safe for the patient?

What do we need to know from a financial standpoint? How expensive is Alzheimer’s care?

When should we consider professional custodial care or nursing home confinement?

What should I do if I (or my loved one) suffers from delusions/hallucinations? [See “11 Tips for Managing Alzheimer’s Delusions & Hallucinations.”]

What should I do if (when!) my loved one wanders off (“elopes”)? How can a wanderer be kept safe? How can wandering be frustrated or prevented? [See the “Master List” to ALZHEIMERSPROOF’s five-part “Ultimate Guide to Alzheimer’s-Proofing a Home.”]

Notes:

[1] If you have a trusted caretaker, family member, or friend who can accompany you, going with him or her might facilitate your comprehension and retention.

Introductory Remarks

The debilitating effects of Alzheimer’s Disease (or other forms of dementia) are probably too familiar for my readership. (For an introduction to Alzheimer’s, see HERE.) Because the symptoms of cognitive decline are so crippling and traumatic, and its downward trajectory so steep, it is not surprising that healthcare workers and medical practitioners are busy trying to discover useful interventions.

Prospective palliatives or treatments fall into two broad categories.

Number one, there are what we might call “conventional” medications, manufactured by companies in the pharmaceutical industry and generally available through a physician’s prescription. One of the first major offerings in this line was the compound known as “tacrine,” sold under the brand name Cognex.

Number two, there are herbal or other more “traditional” concoctions that are, in principle, arguably more accessible. This increased accessibility is due to the fact that, while herbal-based elixirs and pills may be obtained through naturopaths or other “holistic” healers, the plants upon which these formulas are based may be grown and harvested by virtually anyone.[1]

Mainstream Pharmaceuticals

Cholinesterase Inhibitors[2]

“Cholinesterase inhibitors work by increasing the function of certain receptors in the brain that are stimulated by the hormone acetylcholine. They Ritchasonhawth do this by interfering with cholinesterase, the enzyme that breaks down acetylcholine. People with Alzheimer’s disease …develop a shortage of this brain chemical …[C]holinesterase inhibitors …may slow the rate at which the disease worsens.”

(Click the parenthetical names for more specific product information.)

Donepezil (Aricept)

This pill is usually prescribed in doses of 5mg to 10mg and is used for all stages of Alzheimer’s. Normally, it is given at bedtime.

Galantamine (Reminyl) (Razadyne)

Typically recommended for early to middle-stage Alzheimer’s, it is often taken twice a day (e.g., in the morning and in the evening). Dosages can range from 8mg to 32mg.

Rivastigmine (Excelon)

Like Galantamine, this drug is geared to Alzheimer’s sufferers who are still in early to middle stages. Rivastigmine may be taken in two doses and is usually prescribed in 3-12mg amounts.

Tacrine (Cognex)

This now-unused pharmaceutical was initially offered for early-stage Alzheimer’s. It was not well absorbed, had to be taken on an empty stomach, and required up to four doses totaling between 40 and 160mg daily.

N-Methyl-D-Aspartate (NMDA) Inhibitors[3]

One possible causal factor with Alzheimer’s is the “overstimulation of NMDA receptors in the brain.” Therefore, another class of drugs is the so-called NMDA receptor antagonists or NMDA inhibitors.

Memantine (Namenda)

Prescribed for mid- to late-stage Alzheimer’s, “Memantine blocks NMDA receptors but it does not stop the nerve degeneration that is a normal part of A[lzheimer’s] D[isease].” It is usually given in doses of 5-20mg per day.

Blends

Memantine/Donepezil (Namzaric)

This is just a blend of the previously described cholinesterase inhibitor Donepezil and the NMDA inhibitor Memantine.

COX-2 Inhibitors – Experimental Usage

One study abstract reports: “It has been demonstrated that a number of inflammatory processes are active in the brain of patients with A[lzheimer’s] D[isease], and therefore it is believed that an anti-inflammatory regimen may offer some degree of neuroprotection. Several studies have indicated that use of nonsteroidal anti-inflammatory drugs (NSAIDs) is associated with delayed onset and/or slowed cognitive decline in AD. Although not currently approved for this condition, recent findings have demonstrated that cyclooxygenase (COX)-2 is of primary importance in the inflammatory response and may have a role in neurodegeneration. Therefore, selective COX-2 inhibitors (coxibs) may have an advantage over traditional NSAIDs as potential therapeutic agents in AD.”[4]

Current COX-2 Inhibitors include:

Celecoxib (Celebrex); Rofecoxib (Vioxx); and Valdecoxib (Bextra).

COX-2 Considered Dangerous?

“Celecoxib (Celebrex) is the only COX-2 inhibitor available in the United States. It is available as a generic. Rofecoxib (Vioxx) and valdecoxib (Bextra) were withdrawn from the market in 2004 and 2005, respectively, because they excessively increased the risk of heart attacks and strokes with long term use.”[5]

Alternatives/Supplementals

Fatty Acids

Caprylic (Octanoic) Acid

This compound is a constituent of goat’s milk (among other animals) and can be found in both coconut and palm-kernel oil as well as in the herb thyme. The idea is that “caprylic triglyceride[s] …can serve as an alternate energy substrate for neuronal metabolism.” In English: it is speculated that caprylic acid can give the brain an energy boost.

Lecithin

“Lecithin is a fat that is essential in the cells of the body. …Lecithin is used for treating memory disorders such as dementia and Alzheimer’s disease.”[6]

Omega 3

“Omega 3” is a general heading for a class of fatty acids that include ALA (alpha-linolenic acid, found in canola and flaxseed oils as well as in certain nuts – like walnuts); DHA (docosahexaenoic acid, found in dairy products and fish); and EPA (eicosapentaenoic acid, found in fish). “Fish oil” capsules usually contain some DHA and EPA. ALA supplements often have to be purchased separately.

Herbs

For an updated and expanded list of herbs, see my “Top Twenty-Five (25) Herbs for Treating (& Avoiding) Alzheimer’s.”

Calamus (Acorus calamus)

“In Chinese medicine, the closely related species Acorus gramineus is known to return clear thought and comprehensibility to cognitive function by removing stagnant phlegm type material. In clinical practice, calamus has been used with head trauma patients to reduce fogginess and help the patient concentrate. No studies have been performed with calamus and dementia, but it may be worth investigation.”[7]

Cat’s claw (Uncaria tomentosa)

“Alzheimer’s disease is characterized by the accumulation in the brain parenchyma [tissue – Ed.] of insoluble fibrillar deposits, ‘plaques,’ that contain the β-amyloid protein. Studies suggest that providing agents or compounds that are capable of inhibiting this assist patients with Alzheimer’s disease. In our search for possible natural inhibitors of β-amyloid fibrillogenesis, we have discovered PTI-00703®, which is a proprietary aqueous extract derived from the bark of the rain forest woody vine known as Ucaria tomentosa or cat’s claw. The purpose of the present study was further to determine the in vivo effects of the plant derivative PTI-00703® on inhibition of β-amyloid fibril formation.”[8]

Clubmoss (Huperzia serrata)

This plant contains a natural cholinesterase inhibitor known as “Huperzine A,” (which entry, see below). “Pure and standardized extracts of this herb have been shown to increase mental acuity, language ability, and memory in a significant percentage of subjects with Alzheimer’s disease.”[9]

Cubeb (Piper cubeba)

This plant is a “[member] of the pepper family” and is used mainly to treat “digestive problems …and chronic bronchitis.”[10] However, “[f]olk medicine uses include treatment …for poor memory.”[11]

Gingko Biloba

Along with rosemary, Gingko is one of the two most potentially useful herbs for treating Alzheimer’s and other memory-related ailments.

“Ginkgo Biloba is a living fossil tree having undergone little evolutionary change over almost 200 million years. While currently it is essentially extinct in the wild, it is widely cultivated for its nut as well as for its leaves. …Extracts of the leaves have been used for 5000 years in traditional Chinese medicine for various purposes. Medicinal extracts are made from dried leaves.”[12]

One study reported: “Based on a quantitative analysis of the literature there is a small but significant effect of 3- to 6-month treatment with 120 to 240 mg of G biloba extract on objective measures of cognitive function in A[lzheimer’s] D[isease].”[13]

“Ginkgo, by improving blood circulation to the central nervous system, aids in the treatment of dementia and Alzheimer’s disease.”[14] “Poor circulation can lead to a host of issues, including …poor memory or decreased cognitive function.”[15]

“…Ginkgo is used …as a brain and mental energy stimulant. The plant is known to increase both peripheral and cerebral circulation through vaso-dilation. Gingko has been used to increase the quality of blood flow to the brain to improve memory. …Gingko biloba stimulates cerebral circulation and oxygenation of cells; hence, mental clarity and alertness …[are] experienced.”[16]

“Extensive research since the 1960s has established the importance of gingko in improving poor cerebral circulation and aiding memory and concentration. Several clinical trials have shown that gingko has real potential for treating dementia, including Alzheimer’s disease, and can be used as a preventive.”[17]

Gotu Kola (Centella asiatica)

Gotu kola has “Traditionally [been] used as a tonic herb that supports …brain health by promoting good memory…”.[18]

“Gotu kola contains substances that are used to build brain chemicals (neurotransmitters) instrumental in memory and learning, and may hold promise in slowing the progression of Alzheimer’s disease.”[19]

“Historically, Gotu Kola is considered to be one of the best herbal nerve tonics. Many people use Gotu Kola to improve their learning ability by facilitating better recall. …Gotu Kola is valued as a nervous system restorative. …Gotu Kola was found to increase mental activity …and to improve memory. …Got Kola is a ‘brain food’ which promotes memory…[It] is effective in the treatment of mental problems dealing with …loss of memory. It is sometimes known as the memory herb because it is known to stimulate circulation to the brain.”[20]

Juniper (Juniperus communis)

“Herbalist John Christopher …used juniper to strengthen the brain, memory and optic nerve.”[21]

Lesser Periwinkle (Vinca minor)

“Lesser periwinkle contains the alkaloid vincamine, which has shown some benefit to people with Alzheimer’s disease. Lesser periwinkle contains the alkaloid vincamine. …[V]incamine …was shown to be beneficial in a …double-blind trial.”[22]

The Herbal PDR adds: “Periwinkle is used internally for …cerebral circulatory impairment and support for the metabolism of the brain. It is also used internally for loss of memory…”.[23]

Lemon Balm (Melissa officinalis)

According to the 17^th-century English diarist and horticulturist John Evelyn: “Balm is sovereign for the brain, strengthening the memory…”.[24]

Rhodiola (Rhodiola rosea)

There is some evidence to suggest that Rhodiola supplementation may result in a “statistically significant improvement” in patients suffering from “…cognitive deficiencies.”[25]

Rosemary (Rosemarinus officinalis)

Well known to those who know their ways around a kitchen, Rosemary “Leaves may be used (fresh or dried) in a variety of cooking applications such as stews, breads, stuffings, [and] herbal butters or vinegars. Leaves also provide excellent flavor to meats, fish and vegetables. …Rosemary has a long history of uses for a variety of medicinal and curative applications…”.[26] For example, “Rosemary is used in folk medicine for …poor memory.”[27]

“In ancient Greece, Rosemary was believed to strengthen the memory. …In the Middle Ages, in Europe, Rosemary was used …to help weak memory …Rosemary is …a string brain and memory stimulant.”[28]

“Rosemary helps increase the oxygen supply to the brain, thus sharpening concentration and memory.”[29]

According to “botanist James A. Duke…[, rosemary prevents] the breakdown of acetylcholine. …[In fact,] rosemary contains nearly a dozen different aromatic chemicals that protect against …[acetylcholine] breakdown. …[But,] the aromatic plant chemicals found in rosemary are not only absorbed orally. They’re absorbed through the pores in the scalp! Dr. Duke realized that at least some of these phytochemicals would get from the scalp into the bloodstream, and from the bloodstream into the brain.”[30] So, besides ingesting rosemary, “using a shampoo infused with its oil [might] help preserve memory.”[31]

Sage (Salvia officinalis)

Another staple of the spice rack, “[i]t is considered a memory strengthener… It has been thought associated with longevity and as restoring failing memories of the elderly. …It is beneficial for mental exhaustion and strengthening the ability to concentrate. It improves memory…”.[32]

“Laboratory studies suggest that sage may be useful in preventing the onset of Alzheimer’s disease.”[33]

For more, see: “Top Twenty-Five (25) Herbs for Treating (& Avoiding) Alzheimer’s.”

Miscellaneous Supplements

Acetylcholine

This chemical is a neurotransmitter. As discussed in the section on cholinesterase, acetylcholine insufficiency is widely believed to be a contributing factor to the onset of Alzheimer’s. “We’ve known for a long time that acetylcholine is low in people with Alzheimer’s disease.”[34] It is possible to supplement with acetylcholine directly. “So[,] if you can keep your acetylcholine levels high, you’re going a long way to maintain and even improve your memory.”

Coenzyme Q10 (Ubiquinone)

Coenzyme Q10, or “COQ10,” has antioxidant properties, “[i]ncreases oxygenation of cells and is involved in the generation of cellular energy.”[35]

Homotaurine

One fairly intimidating abstract – somewhat truncated – indicated: “Homotaurine, a small aminosulfonate compound that is present in different species of marine red algae, has been shown …to provide a relevant neuroprotective effect …[A]nalyses have shown positive and significant effects of homotaurine …including a reduction in hippocampal volume loss and lower decline in memory function …as well as a reduction in global cognitive decline in APOE4 allele carriers…”.[36]

Translation:

Huperzine A

This compound reputedly “[i]mproves cognitive functions and may improve short-term memory.”[37] See Clubmoss (above).

Phosphatidylserine

“Phosphatidyl Serine (PS) is a substance classified as phospholipid (a phosphorous-containing lipid) that is needed by every cell in the body, and is especially abundant in nerve cells. …PS …production dwindles as we age… Supplemental PS …has been said to reduce symptoms of …Alzheimer’s disease…”.[38]

Some Caveats

Different types of Alzheimer’s?

One Dr. Dale Bredesen postulates that “Alzheimer’s Disease” is really a constellation of distinguishable conditions. He states that some “…people who have dementia are associated with chronic inflammation, which we call ‘type 1’ or ‘inflammatory Alzheimer’s.’ And people who have problems with ‘trophic loss’ so that you’ve got a situation where you’re withdrawing trophic support, be it from estradiol, vitamin D, B12, testosterone, what have you, that is associated with cognitive decline, or what we call ‘type 2.’ Or, people who have essentially sugar toxicity we call ‘type 1.5’ because it has both some inflammation and also trophic loss and insulin resistance. And then we also found a subgroup of people whose main problem is toxic exposure, be it from biotoxins like mycotoxins, or things like mercury, you can see that these people have the decline and until you treat that and remove it you will not see improvement.”[39] This latter sort is “type 3.”

On this taxonomy, one might think that “Type 1” Alzheimer’s could respond well to anti-inflammatories. This is perhaps part of the motivation (mentioned above) in testing to so-called “COX-2 inhibitors.” However, keep in mind that are herbal (and other) anti-inflammatories as well.

These might include: Aloe Vera (Aloe vulgaris), Beta-Glucan, Bilberry (Vaccinium myrtillus), Boswellia (Boswellia serrata), Bromelain (Bromelia comosa), Garlic (Allium sativum), Grape (Vitus vinifera), Olive Leaf (Olea europaea), Selenium, Turmeric (Curcuma longa), and Vitamin E (Alpha-Tocopherol).

What Dr. Bredesen calls a lack of “trophic support” may be otherwise termed nutrient deficiency. This implies, though, that those suffering from this type of Alzheimer’s could be helpfully supported by nutrient-rich (“super”) foods, vitamin and mineral supplements, etc.

Common superfoods include: Acai Berries (Euterpe oleracea), Almonds (Prunus dulcis), Apples (Malus pumila), Asparagus (Asparagus officinalis), Avocado (Persea americana), Blackberries (Rubus fruticosus), Blueberries (Vaccinium cyanococcus), Broccoli Sprouts (Brassica oleracea), Brown Rice (Oryza sativa), Brussels Sprouts (Brassica oleracea), Chia Seeds (Salvia hispanica), Cocoa (Theobroma cacao), Cranberries (Vaccinium oxycoccus), Eggs (Gallus gallus domesticus), Flaxseed (Linum usitatissimum), Garlic (Allium sativum), Ginger (Zingiber officinale), Green Tea (Camellia sinensis), Kale (Brassica oleracea), Kefir,[40] Kiwi (Actinidia deliciosa), Lentils (Lens culinaris), Microgreens,[41] Mushrooms,[42] Olive Oil (Olea europaea), Salmon,[43] Seaweed,[44] Spinach (Spinacia oleracea), Sweet Potato (Ipomoea batatas), Quinoa (Chenopodium quinoa), Turmeric (Curcuma longa), Walnuts (Juglans regia), and Watermelon (Citrullus lanatus).

Finally, “Topic 3” – on the contemplated taxonomy – has its genesis in overexposure to environmental or other toxins. It stands to reason, then, that detoxification herbs might be useful.

Such plants include: Burdock (Arctium lappa), Cilantro (Coriandrum sativum), Cleavers (Galium aparine), Cranberries (Vaccinium oxycoccos), Dandelion (Taraxacum officinale), Eucalyptus (Eucalyptus globulus), Figwort (Scrophularia nodosa), Goldenrod (Solidago rigida), Ground Ivy (Glechoma hederacea), Lemon (Citrus limon), Milk Thistle (Silybum marianum), Neem Leaf (Azadirachta indica), Nettle (Urtica dioica), Parsley (Petroselinum crispum), Red Clover (Trifolium pratense), White Clover (Trifolium repens), Wood Betony (Stachys officinalis), Wormwood (Artemisia absinthium), and Yellow Dock (Rumex crispus).

Calcium: Yay or Nay?

According to the Alzheimer’s Association: “‘Coral’ calcium supplements have been heavily marketed as a cure for Alzheimer’s disease, cancer and other serious illnesses.”[45] Besides “coral,” another source of calcium appears to be deer and elk antler. “The ground products are rich in calcium… The elixir of antler velvet, according to Chinese medicine, will …[increase] …memory…”.[46]

On the other hand, some literature points the finger for Alzheimer’s onset at calcium. “Sticky clumps of protein called amyloid usually get the blame for causing Alzheimer’s disease. But the real culprit may be calcium, according to a pair of studies published in the research journals Cell and Neuron. …In order to stay healthy, brain cells need to maintain just the right amount of calcium at any given moment. That depends on the cells responding to signals from elsewhere in the brain. [Kevin] Foskett [of the University of Pennsylvania] and others say an abnormal response to these signals leads to abnormal calcium levels in brain cells, which ultimately leads to Alzheimer’s.”[47]

Two Perspectives on ‘Evidence’

Since we have gotten into a discussion of “alternative” supplements, it seems prudent to say something about evidence. The importance of these concluding comments became apparent to me when I surveyed some of the information available online concerning pharmaceutical alternatives.[48] Some websites repeatedly use phrases such as “there’s no scientific evidence that [such and such].” However, this is typically stated without any further comment about what, exactly, is meant by “scientific evidence” or, to put it bluntly, why anyone should care that there “isn’t any” for some supplement (if, indeed, this is true).

As it happens, there are several views about what “scientific evidence” amounts to. In fact, there are many different views that a person could hold on what constitutes “evidence” (simpliciter). For our purposes, let’s say (provisionally) that “evidence” just means something that raises the probability that some claim is true. “Scientific evidence,” then, is those probability raisers that the institution of science acknowledges, discovers, produces, or otherwise “deals with.”

This is a large debate in a branch of philosophy known as epistemology (i.e., the study of how human beings know things). The general question is how much weight to give to “scientific evidence.” Ancillary questions include: Should such evidence be privileged? Is it somehow the “purest” or most “reliable” sort of evidence? Etc.

I cannot hope to settle any of these matters, here. I won’t even try. In what follows, I will merely sketch two competing outlooks in this debate as it pertains to the topic at hand. My aim is simply to make readers aware that there is a debate – since some websites (for whatever reasons) do not mention it.

Perspective 1: The Only Evidence That Matters is Scientific Evidence

People who take this view are going to hold that scientific – and, especially, clinical – evidence is the only sort that should make any difference to our credences. In other words, if you want to know whether it would be worthwhile to take an alternative supplement, you ask one main question: What do the clinical trials show?

The underlying idea is something like the following. All questions about healthcare are a matter of science. All questions about pharmaceuticals and supplements are questions about healthcare. Therefore, all questions about pharmaceuticals and supplements are matters of science.

Of course, not all clinical trials are equally impressive. So, there’s bound to be a bit of subtlety. For instance, there’s a difference between a substance that has been put through “Phase Three” trials and one that has only gone through “Phase Two” trials. Or again, perhaps the Food and Drug Administration (FDA) has a cachet that outweighs studies conducted in the private sector. And so on.

But, these niceties aside, if Supplement x has clinical, scientific evidence in its favor, then a person taking Perspective 1 will – on balance – be more willing to acknowledge x as a viable option than he or she would be if x has little to nothing by way of such data.

It is worthy noting, though, that a person taking Perspective 1 might still doubt the importance – or the objectivity – of certain clinical trials. For instance, such a person might suspect that various government agencies or private enterprises are – because of financial or political reasons – compromised and unable to carry out, plan, or report on studies in a truly scientific manner.

Perspective 2: While Scientific Evidence Is Important, Other Evidence Should Count Too

But Perspective 1, while widespread (and perhaps even the default view among certain healthcare professionals), is by no means the only defensible position. Another point of view is that – yes – scientific evidence is a certain (and important) sort of evidence, but it is not the only kind.

A person holding this point of view may point out that we believe all sorts of things that are not susceptible to scientific scrutiny in the usual sense. For instance, there is no scientific test that can show that my mom loves me. Perhaps more intriguingly, there is no scientific evidence that demonstrates that one must have scientific evidence for a belief. In other words, according to Perspective 2, someone who elevates scientific evidence above other kinds of evidence does so apart from scientific evidence in the strict sense.

However, a Perspective-1 person might think that healthcare really is a matter for science – as our previous argument seemed to indicate. What could a Perspectibe-2 person say in reply? There are at least three possible tacks.

Number one, a Perspective 2 individual could agree with his or her Perspective-1 counterpart. Such a person might say: “Yes, healthcare is a matter for science.” Other evidence might support non-healthcare-related beliefs, but as far as healthcare-related beliefs go, scientific evidence is the only game in town. And that’s that. Because of the way that I have defined Perspective 2, nothing stands in the way of a Perspective-2 person reaching this sort of conclusion. But it’s not the only possible route.

Number two, a person holding Perspective 2 might reject the argument given earlier. In its place, the Perspective-2 theorist might say something like this. Some questions about healthcare are not matters of science. All questions about healthcare are questions about human experience. Therefore, some questions about human experience are not a matter of science.

What does this mean? Well, you could think of it this way. If folk tradition has it that – for hundreds or thousands of years – people have been using supplement x to treat ailment y, then we have folk evidence that x treats y.

Could this “folk evidence” be good enough for us to turn to x if we suffer from y? For the Perspective-1 person, then answer will surely be no. But, for the Perspective-2 person, the answer could be yes.[49]

Disclaimers

In this article, I survey the landscape of available pharmaceuticals and alternatives. Of course, I am incompetent to recommend – let alone “prescribe” – any treatment plan to anyone. Your, or your loved one’s, situation and medical history are unique. Specific health-related questions should be directed to trusted medical professionals who base their opinions on direct evaluations and physical examinations. Herbals, pharmaceuticals, and other substances may have drug interactions and other side effects. These possibilities need to be discussed with your doctor. This material is provided as-is for general informational purposes only. ALZHEIMERSPROOF.com is not responsible for anyone’s bad reactions to any drug, plant, product, or vitamin listed herein. Use the information at your own risk!

Further Reading:

• “Top Twenty-Five (25) Herbs for Treating (& Avoiding) Alzheimer’s.”
• “Top 30 (+5) Supplements for Alzheimer’s-Related Detoxification.”
• “Top Ten (10) Nutrient and Vitamin Supplements for Alzheimer’s.”
• “Ten (10) Things to Do Now to Reduce Your Risk of Alzheimer’s Later.”
• “How to Protect Yourself Against the Coming Dementia Crisis.”

Notes:

[1] Of course, you have to have suitable conditions (climate, sunlight, soil, etc.) and be willing to put in the time and effort.

[2] Appetite loss; Diarrhea; Headache; Nausea; Vomiting; Weight loss

[3] NMDA Side Effects: Breathing difficulties; Confusion; Constipation; Dizziness; Fatigue; Headache; High blood pressure; Vomiting.

[4] P. S. Aisen, “Evaluation of Selective COX-2 Inhibitors for the Treatment of Alzheimer’s Disease,” Journal of Pain Symptom Management, Vol. 23, No. 4, Supplement, Apr., 2002, pp. S35-40, <https://www.ncbi.nlm.nih.gov/pubmed/11992749>.

[5] Omudhome Ogbru, “Cox-2 Inhibitors,” Jay Marks and Charles Patrick Davis, eds., Medicine Net, <https://www.medicinenet.com/cox-2_inhibitors/article.htm#what_drugs_interact_with_cox-2_and/or_nsaids?>.

[6] “Lecithin,” WebMD, <https://www.webmd.com/vitamins/ai/ingredientmono-966/lecithin>.

[7] J. J. Pursell, The Herbal Apothecary: 100 Medicinal Herbs and How to Use Them, Portland, Ore.: Timber Press, 2015, pp. 82-83.

[8] Gerardo Castillo, Daniel Kirschner, Ann Yee, and Alan Snow, “Electron Microscopy and X‐ray Diffraction Studies further Confirm the Efficacy of PTI‐00703® (Cat’s Claw Derivative) as a Potential Inhibitor of Alzheimer’s β‐Amyloid Protein Fibrillogenesis,” Apr., 2002, <https://www.researchgate.net/publication/229941902_Electron_Microscopy_and_X-ray_Diffraction_Studies_further_Confirm_the_Efficacy_of_PTI-00703R_Cat%27s_Claw_Derivative_as_a_Potential_Inhibitor_of_Alzheimer%27s_b-Amyloid_Protein_Fibrillogenesis>; in book Khalid Iqbal, Sangram S. Sisodia, and Bengt Winblad, eds., Alzheimer’s Disease: Advances in Etiology, Pathogenesis and Therapeutics, Hobken, N.J.: Wiley, 2001, pp. 449-460.

[9] Balch, op. cit., p. 197.

[10] Andrew Chevallier, Encyclopedia of Herbal Medicine, 2^nd Ed., New York: DK Publ., p. 249.

[11] Joerg Gruenwald, et al., eds., PDR For Herbal Medicines (hereinafter “Herbal PDR”), 4th Ed., Montvale, N.J.: Thomson Healthcare, 2007, p. 243.

[12] B. S. Oken, D. M. Storzbach, and J. A. Kaye, “The Efficacy of Ginkgo Biloba on Cognitive Function in Alzheimer Disease,” Archives of Neurology (now known as JAMA Neurology), Vol. 55, No. 11, 1998, pp. 1409-1415.

[13] Ibid.

[14] Jack Ritchason, The Little Herb Encyclopedia: The Handbook of Nature’s Remedies for a Healthier Life, 3^rd Ed., Pleasant Grove, Utah: Woodland Health Books, 1995, p. 99.

[15] Pursell, op. cit., p. 112. Incidentally: “Hawthorn [Crataegus laevigata] is indicated …as a good choice to increase blood flow to areas that need it,” ibid.

[16] Ritchason, op. cit., p. 100.

[17] Chevallier, op. cit., p. 102.

[18] Tammi Hartung, Homegrown Herbs: A Complete Guide to Growing, Using, and Enjoying More Than 100 Herbs, North Adams, Mass.: Storey Publ., 2015, p. 197.

[19] “Gotu Kola,” Cloverleaf Farm, Dec. 23, 2010, <https://www.cloverleaffarmherbs.com/gotu-kola/>.

[20] Ritchason, op. cit., p. 110.

[21] Pursell, op. cit., p. 120.

[22] “Periwinkle,” Michigan Medicine, May 24, 2015, <https://www.uofmhealth.org/health-library/hn-3659003>.

[23] Herbal PDR, op. cit., p. 645.

[24] Rosemary Gladstar, Rosemary Gladstar’s Medicinal Herbs: A Beginner’s Guide, North Adams, Mass.: Storey Publ., 2012, p. 157; citing John Evelyn, 1679. Cf. Penelope Ody, The Complete Medicinal Herbal, London: Dorling Kindersley, 1993, p. 78.

[25] Herbal PDR, op. cit., p. 703.

[26] “Rosemary officinalis,” Missouri Botanical Garden, <http://www.missouribotanicalgarden.org/PlantFinder/PlantFinderDetails.aspx?kempercode=b968>.

[27] Herbal PDR, op. cit., p. 709. See, also, Gladstar, op. cit., p. 84.

[28] Ritchason, op. cit., pp. 200 & 201.

[29] Hartung, op. cit., p. 219. “Blessed Thistle [Cnicus benedictus] acts to strengthen the heart, lungs, increases circulation to the brain by bringing oxygen to it, which strengthens the memory…,” Ritchason, op. cit., p. 31.

[30] “Prevent Alzheimer’s Disease by Changing Your Shampoo,” Women’s Health Letter, 2008; cached at The Free Library, <https://www.thefreelibrary.com/Prevent+Alzheimer%27s+disease+by+changing+your+shampoo.-a0182976372>.

[31] Ibid.

[32] Ritchason, op. cit., pp. 206 & 207.

[33] Chevallier, op. cit., p. 131.

[34] “Prevent Alzheimer’s Disease by Changing Your Shampoo,” op. cit.

[35] Balch, op. cit., p. 196.

[36] C. Caltagirone, L. Ferrannini, N. Marchionni, G. Nappi, G. Scapagnini, M. Trabucchi “The Potential Protective Effect of Tramiprosate (Homotaurine) Against Alzheimer’s Disease: A Review,” Aging Clinical and Experimental Research, Dec. 2012, Vol. 24, No. 6, pp. 580-7, <https://www.ncbi.nlm.nih.gov/pubmed/22961121>.

[37] Balch, op. cit., p. 196.

[38] Balch, op. cit., p. 91.

[39] “The End of Alzheimer’s With Dr. Dale Bredesen,” Amen Clinics, Jun. 1, 2018, <https://www.amenclinics.com/blog/the-end-of-alzheimers-with-dr-dale-bredesen/>.

[40] Includes various probiotics, for instance: Bifidus (Bifidobacterium bifidum) and Acidophilus (Lactobacillus acidophilus).

[41] Amaranth (Amaranthus retroflexus), Basil (Ocimum basilicum), Celery (Apium graveolens), Fennel (Foeniculum vulgare), Radish (Raphanus raphanistrum), and Watercress (Nasturtium officinale).

[42] Including: Porcini (Boletus edulis), Maitake (Grifola frondosa), and Shiitake (Lentinula edodes).

[43] E.g., Atlantic, Chinook, Chum, Coho, Pink, and Sockeye.

[44] Including: Green Algae varieties – e.g., Chlorella (Chlorella vulgaris) and Sea Lettuce (Ulva lactuca); Red Algae – e.g., Irish moss (Chondrus crispus) and Laver (Porphyra umbilicalis); and Brown Algae – e.g., Giant Kelp (Macrocystis pyrifera) and Wakame (Undaria pinnatifida).

[45] “Alternative Treatments,” Alzheimer’s Association, <https://www.alz.org/alzheimers-dementia/treatments/alternative-treatments>.

[46] Ritchason, op. cit. p. 13.

[47] Jonathan Hamilton, “Studies Find Link Between Alzheimer’s, Calcium,” All Things Considered, National Public Radio, Jun. 25, 2008, <https://www.npr.org/templates/story/story.php?storyId=91891831>.

[48] Initially, these remarks were framed as “preliminaries.” But, because they are somewhat abstruse and dense, I have relegated them to the back end.

[49] The Perspective-2 individual might hope for future scientific evidence that corroborates the folk claim. Or, perhaps not! Some might worry that, since FDA trials (and the like) cost a lot of money, it is unlikely that such trials will ever be conducted on herbs or other supplements that cannot be patented in any straightforward way. The thought is that FDA trials are funded by companies that expect to recoup their expenses after they have exclusive rights to sell an approved product. If virtually anyone can grow or otherwise obtain x, then it is unlikely that any company is going to foot the bill for an FDA trial.

Among the many unfortunate side-effects or symptoms of Alzheimer’s (and other forms of dementia) is the susceptibility of the afflicted individual to false beliefs and inaccurate perceptions. This was made painfully evident to our family in dealing with my dad, Jim. I mention a few specific illustrations of this further on. For more detailed accounts, read “Jim’s Story.”

But, Jim was hardly unique in this regard. So, as I have said numerous times in this weblog: what follows is the resource that I wish I had had when I was managing occurrences of paranoia in my dad’s house. I hope that it can help you and your family dealing with what is an extremely difficult aspect of the disease.

Definitions

Hallucinations

Medically, a hallucination is defined as follows. “The apparent, often strong subjective perception of an external object or event when no such stimulus or situation is present; may be visual, auditory, olfactory, gustatory, or tactile.”[1] So, an Alzheimer’s-afflicted person may perceive insects, pests or the like of that, where there in fact are none. (But check the claims out first! See Tip # 3.)

Delusions

Similarly, a “delusion” is “[a] false belief or wrong judgment, sometimes associated with hallucinations, held with conviction despite evidence to the contrary.”[2] Delusions are far more common than hallucinations. There are many relevant sorts of delusion. As recounted elsewhere, Jim falsely believed that my children (then around the ages of 6 and 8) were stealing from him and leaving their toys in his personal space. Now, there’s no question that kids leave toys around. And my kids were no exceptions. But my mom used to teach kindergarten-age children. And what my dad falsely believed were my kids’ toys, were actually learning games (and so on) that my mom was storing at home.

Tips

1. Remain calm. You will only worsen the situation by loosing your cool. Additionally, Alzheimer’s sufferers (among others) pick up on – and feed off – your own emotional state. So, try to keep your reactions in check. It’s easier said than done, I realize. But it’s importance cannot be understated. It is a key point.
2. Draw near to your loved one. There is something to be said for just “being there.” Sometimes maintaining proximity can by itself defuse the situation. It’s said that people’s three favorite words are “please,” “thanks,” and our own names. On the assumption that this bit of psychology is not rendered worthless by the Alzheimer’s, try trading on it. If they don’t respond to the usual forms of address (“it’s okay, mom”; “I’m here, grandpa”; etc.), then see if their given name will snap them out of it.
3. Investigate the claims. Sure, your loved one’s cognition is “off.” We know this is true. It is not uncommon for a cognitively impaired individual to experience perceptual difficulties. However, as the saying goes: Even a blind rooster picks up some corn. The fact that mom or grandpa is prone to false beliefs does not mean that every utterance is false. So, before you just assume that there really is no spider on the bed, it’s probably best to check to make sure.
4. Express concern, empathy, reassurance, understanding. For dementia patients, it’s not always what you say, but how you say it. You may have to modify your approach depending on the person’s level of function. But, some suggestions include statements such as: “I’m so sorry that you are having such a [bad, painful, scary] experience,” “I can’t imagine what you are feeling right now,” or “I cannot fully relate to what you are experiencing, but you should know that I am here for you.” While you’re investigating – or while you are following any course of action – say encouraging or comforting things.
5. Distract/redirect. After you have investigated and decided that the relevant claim (whatever it was) is baseless, then you can put some energy into trying to help your loved one get the uncomfortable thought out of his or head. There are several tacks that you could try. Maybe it’s close to time for a meal – or at least for a glass of water. You could also try turning on some music. (See “Can Music Calm an Alzheimer’s Patient?”) Along similar lines, you could try switching on the television. Or perhaps you could draw his or her attention to some old photographs, read out of a book or newspaper article, or take him or her on a walk.
6. Turn off background noise. Of course, the previous suggestions assume that the radio or television are not already on. If dad’s delusions or grandma’s paranoia arouse amidst some level of background din, then consider quieting things down. Lower volume controls or power off electronic devices entirely.
7. Take your loved one to the doctor for a checkup. Granted that Alzheimer’s can issue in delusory beliefs and hallucinatory perceptions, it is a fact that other conditions may cause similar symptoms. For example, a urinary-tract infection (or any ailment that makes a person feverish) can derail a person’s belief-forming mechanisms. The bottom line is this: Just to be sure about the etiology, have your loved one evaluated by a medical profession. Prescriptions may be another factor. If there has recently been a dosage or script change, these alterations could be relevant to the behaviors that you are dealing with.
8. Don’t take any negative reactions personally. The fact that an Alzheimer’s sufferer has a proclivity to react badly needs to be kept clearly in mind. Take it in stride. My dad owned a baseball encyclopedia that he purchased in 1969, when he was around 39 years old. When I was about 13, he bought an updated version for me. I had in in my possession for decades. At one point, when we were all dealing with his dementia, he took the updated book off my shelf and claimed that it was his. He insisted that I return it. Truthfully, it hurt my feelings because his giving it to me had been a special memory. I felt that it must not have been important to him. But this reaction, while understandable, was unfair. His brain was being ravaged by a disease that was, to put it somewhat artfully, “deleting” memories from his hard drive. Yes, he had confused his book and mine. But he did not do this spitefully. His own book had meant something to him, and this memory (crossed up as it was) had been what he acted upon.
9. Keep to the daily routine (as much as possible). If your loved one is anxious or scared, familiar behaviors or objects can be a great comfort. When paranoia strikes, try to steer your charge back to the usual activities. If it’s time for dinner, then set the place settings as you normally would. Leverage the schedule to help “reset” things and calm everyone down.
10. Note patterns. If grandpa becomes agitated or confused after morning coffee, then try switching to decaf.[3] If mom gets skittish in the evening hours, then you might be contending with an ancillary condition known as “sundowners.” Perhaps grandma is set off when the postal truck passes by the window. Or it might be that dad’s episodes begin after visits from one particular nurse. Perhaps events occur during the grogginess that lingers after an afternoon nap; or maybe they happen following a sleepless night.[4] Any of this information could help you to understand, anticipate, and deal with the relevant delusions. Plus, it will give you further detail to disclose to medical professionals.
11. Let them take their time. You want the delusional or hallucinatory experience to conclude. Toot sweet. And I get it. But, don’t rush them. It’s irritating, scary or uncomfortable for you loved ones as well. It’s important to “de-stress” the circumstance, not inflame matters. Placing them under time constraints – whether explicit or implicit – will therefore be counterproductive. The ramp up in pressure typically will not go unnoticed. It will merely increase the felt frustration by all parties and prolong the event.

Of course, these suggestions are not magical. The paranoid incident will pass with time. The best that you can do sometimes is simply to be present and loving. But also bear in mind that persistent or recurring delusions/hallucinations may require pharmaceutical (or other) interventions. So, your loved one’s physician should be kept in the loop. (See, again, Tip #7.)

Notes:

[1] “Hallucination,” MediLexicon, <https://www.medilexicon.com/dictionary/39105>.

[2] “Delusion,” MediLexicon, <https://www.medilexicon.com/dictionary/23469>.

[3] Probably, you want to decrease or eliminate caffeine in your loved one’s diet. But, consult with his or her doctor. For other, possibly beneficial, dietary changes see two other articles on this website: “Alzheimer’s-Proof Your Diet: Vitamin D and Other Nutrients” and “Alzheimer’s-Proofing Your Diet: Carbs, Fats and ‘Exotics’.”

[4] For more on Alzheimer’s and sleep, see the following posts: “Alzheimer’s and Sleep: Too Little, Too Much and Just Right” and “Alzheimer’s and Sleep: Herbs, Spices, and Other Supplements.”