Alzheimer's & Dementia

A disease unlike any other, Alzheimer's will forever alter you, your loved one and your entire family. Facing these changes may seem impossible but understanding the whole spectrum from mental, physical, emotional, medical and financial will help you meet the challenges. Find insights and support here, to face Alzheimer's with strength and grace.

Behaviors Due to Alzheimer's

Hallucinations, Delusions and Paranoia Related to Dementia

Watching an elderly person experience hallucinations and delusions can be difficult when you're trying to offer the best care to someone you love so much. Caregivers want to help loved ones know that these troubling behaviors are not real, but that natural instinct can be wrong.

"You can't argue or rationally explain why something happened. That doesn't help. It just frustrates the person. The person somehow knows that you are talking down to them, not taking them seriously, treating them in an undignified manner," says Lisa P. Gwyther, associate professor in the Department of Psychiatry and Behavioral Sciences at Duke University and director of the Duke Aging Center Family Support Program.

Major psychiatric symptoms of Alzheimer's disease include hallucinations and delusions, which usually occur in the middle stage of dementia, according to the Alzheimer's Foundation of America. About 40 percent of dementia patients experience delusions, while hallucinations occur in about 25 percent of cases. Understanding the differences and why Hallucinations, delusions and paranoia are not symptoms of age, but of disease. Caregivers can't prevent them, but how you respond can help elderly people deal with the reactions, such as aggression, agitation and violent outbursts. As Alzheimer's advances, the responses may become more dangerous as people try to act on the delusions or hallucinations.

Hallucinations are:

A sensory experience – visual, auditory, and/or tactile – that often occurs when someone wakes up.
A false perception of something they see, hear or feel that cannot be corrected by someone telling them it is not real.

Delusions are:

A fixed false belief not supported by reality, and often caused by a faulty memory.
Often blaming caregivers for theft and infidelity.

Paranoia is:

Centered around suspiciousness.
A way an elderly person projects hostility and frustration onto caregivers.

Coping with hallucinations

"Go to their reality," says Dr. Marion Somers, author of "Elder Care Made Easier: Doctor Marion's 10 Steps to Help You Care for an Aging Loved One." "Otherwise, you're going to aggravate them, and you don't want to increase the level of agitation. You want to calm the situation."

Reassure them in the moment by saying, "I see you're scared. I would be scared if I saw those things too." Tell them you will stay with them and they are safe with you.

A comforting touch, such as gently patting their back, may help the person turn their attention to you and reduce the hallucination, according to the Alzheimer's Association. You also can suggest that they move to a different room or take a walk to get away from what they are seeing.

Realize that some hallucinations, such as seeing or hearing children in the house, can be comforting. If the individual is reassured by a hallucination, caregivers don't need to do anything to stop it, Gwyther says. "You need to respond to the things that are scary or disruptive or keep the person from getting adequate care," she says. "If these symptoms escalate and threatening behavior toward a family caregiver, then you have to do something about it."

Other causes of hallucinations can be:

Eyesight or hearing problems
Medications
Physical problems, such as dehydration and kidney or bladder infections
Schizophrenia
Alcohol or drug abuse

Severe hallucinations may warrant anti-psychotic medication, but Gwyther says medication can present a risk for dementia patients. She recommends first changing the way you communicate by reassuring them, and changing the activity and environment.

The Alzheimer's Association offers these tips to change the environment:

See if any lighting or lack of lighting casts shadows, distortions or reflections on walls, floors and even furniture.
Listen for any sounds, such as TV or air conditioning noise, that could be misinterpreted.
Remove mirrors or cover up mirrors, if it could cause someone to think they are seeing a stranger.

Dealing with delusions

Delusions among dementia patients typically are mild and result from memory problems. Individuals fill a hole in a faulty memory with a delusion that makes sense to them because they don't remember where they last saw an object, Gwyther says. Recognize that the elderly individual is living in a world that doesn't make sense and is scared. Don't take any accusations personally or respond by saying, "Why would I take that?"

Instead, reassure the person, without asking questions. If they are looking for an item, tell them you will help them find it. You also may want to keep a spare set of items commonly lost, the Alzheimer's Association recommends.

Then you can try to distract them, by saying something such as "But before we look, why don't we take a break and have some ice cream."

If a caregiver spouse is being confronted with delusions of infidelity, realize that the elderly person is afraid of being abandoned. Here's one possible response: "I'm a one-woman man. We're in this together and we're going to see each other through it."

Responding to paranoia

Paranoia is least likely of the three behaviors, but just as troubling when it's out of character for someone. When paranoia occurs, caregivers can assess the problem by considering these questions, according to the Alzheimer's Association:

What happened right before the person became suspicious?
Has something like this happened before?
Was it in the same room or the same time of day?

If someone is experiencing paranoia, it is important to discuss their medications (prescribed and over the counter as well as vitamins) with their doctor, says Somers, who has more than 40 years of experience as a geriatric care manager and caregiver.

"Sometimes they're overmedicating themselves," she says. "That can bring on paranoia."

Recognizing the causes for all three behaviors and understanding the mindset when someone is enduring hallucinations, delusions and paranoia can help you keep calm as a caregiver.

What's the difference between Alzheimer's hallucinations and delusions?

Q: The doctor told me that my elderly father was having hallucinations and delusions while in the hospital. What’s the difference?

A: A hallucination is experienced through one of the five senses: so a person may see, hear, smell, taste, or feel things that seem real but aren't. A delusion, on the other hand, is something a person thinks something they strongly believe to be true, which is not. Because Alzheimer's hallucinations and delusions seem so real to the person experiencing them, it is often impossible to convince them otherwise.

Both of my parents had Alzheimer's simultaneously. They had numerous hallucinations and delusions, but I realized that if they weren't harmful or hurtful to them, just relax and go with the flow. I'd ask them to tell me more about it and tried to calm their fears. I learned to live in their reality of the moment, rather than cause confusion and make them feel bad all the time by telling them that their minds weren't working properly anymore. Unfortunately, when a hallucination or delusion caused fear, it was so much harder for them—and for me—to deal with.

I cried often during my first year of caregiving before I learned what to say when my father woke me up at 4:00 a.m. "Ohhh my goodness, really Dad? You know what? I think you might have had a real vivid dream. You've been sleeping, and I know my dreams can seem so real to me, sometimes, too. You trust me, don't you? I promise there isn't anyone else in the house, but let's lock all the doors together again so you feel safe, OK?" I can't even describe to you the look of relief and thanks on my father's face.

Then a few years ago, it was so interesting when I experienced my own amazing hallucination while I was in the hospital nine days from breast cancer complications. Initially, I didn't want heavy pain medication, but the pain was so severe I begged my doctor to try everything. Pills, shots, patches, drips, you name it, we tried it. Finally, my doctor sighed in exasperation, "I just don't know what else to give you Jacqueline, we've thrown the hospital at you!"

So, as I lay there in la-la land, I happened to look down to see thousands of ants crawling on the floor and up my hospital bed. I was stunned and frightened, but then amazingly my rational mind somehow thought, "OK, wait a minute here—what are the odds of that many ants being in a brand new hospital?"

I buzzed for my nurse. "Ummm, I'm sorry, I think I may have dropped some of my lunch on the floor and I just saw a few ants—do you see them there now?" She looked down carefully studying the floor (as I'm seeing thousands of black swarming ants) and says, "No, I can't find any now, but I'll have the floor mopped right away."

I thought, hummm, very interesting—I'm having one of those hallucinations that I always lecture about! I kept looking and blinking harder and harder and I could still see thousands of them—so vivid, so real! And then when the door started warbling back and forth with thousands of ants on it, I thought, "Dang, I should have done drugs in my youth, then I'd probably be able to enjoy this more!"

I find it fascinating that as soon as I realized that my mind was playing tricks on me, because of the pain meds, I was able to relax and just enjoyed the show. But I can just imagine how confusing and frightening it would be if I didn't understand that. And that is the case for people with dementia. It would be so infuriating to watch thousands of creepy-crawly ants coming toward me, while being told by everyone that they just weren't there. I swear, when I first saw the "ants" I would have bet money that they were real!

Isn't it interesting that my caregiving experience with my parents, and my own illness, has given me a deeper understanding of hallucinations and delusions—and even more compassion for the victims of dementia, as well as their heart-broken families.

Complications of Alzheimer's

Complications of Alzheimer's Disease can include restlessness, excess energy, accidents, wandering and falls. Some of these complications require treatment such as surgery, or can be fatal. Learn more.

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Complications of Alzheimer's

Why do people die from Alzheimer's Disease?

Q: If Alzheimer’s is a disease of the memory, how do people die from it?

A: Alzheimer's disease is a complex disease. The disease is not only a memory disease as it manifests initially with a marked memory failure. Alzheimer's affects higher brain functions and learning.

When the clinical picture of the disease is fully developed the patient cannot remember who they are, what to do, what they have done and what needs to be done. They do not perform the tasks that keep our body alive and functioning. People in the final stages ofAlzheimer's can have problems swallowing or eating.

The typical case affects an elderly person in their sixties or seventies or eighties. The lack of self awareness and care, prolonged bedding, feeding failure and incapacity to provide proper nutrients are all factors in the development of other life-threatening diseases.

So typically complications of Alzheimer's are heart attacks, thromboembolisms, strokes,kidney failure, and lung infections due to aspiration of food.

Multi-organ failure is usually the cause of death in these patients.

The Stages of Alzheimer’s Disease

It's instinctive to want a map. Where's the next turn? What's the next step? It's a human thought pattern. We at least think we want to know what happens next.

After we find out that a loved one has Alzheimer's disease (or any other disease) it's only natural to research it. What can we expect and when can we expect it?

The National Alzheimer's Association has developed a very useful tool, or "staging system," to use as a frame of reference when coping with Alzheimer's disease. The organization, however, will be the first to tell you that people are not programmed to follow these stages in a direct line. No matter how much we'd like to "know" what stage someone is in, we can't. One day, our loved one may seem like he or she is in stage five, and the next day the disease may seem more like stage four or six. With that in mind, we'll look at the stages as presented by the National Alzheimer's Association, so we at least have a shot at some order.

Stage 1: No impairment (normal function)

There is some thought in the medical community that Alzheimer's disease may start years, if not decades, before we have even a clue that anything is wrong with ourselves or our loved ones. Not much we can do here until there is more known. Genetic research and much more sophisticated technology will no doubt make this an important and focused area of study as we march into the future. But, for now, most of us will never know (would we even want to?) if we are in stage one of Alzheimer's disease.

Stage 2: Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease). At this time you or your loved one may have a sneaking suspicion that something sinister is on the horizon. A little more forgetfulness, but it could be natural aging. A little more irritability when that forgetfulness occurs, but isn't that normal? Hmm, maybe we should chat with a doctor. Still, we aren't likely to get satisfaction (such as a definite yes or no). Most likely, we will hear something to the effect that it's just normal aging, and maybe we should do more crossword puzzles or take a class. Oh yeah, and eat more chocolate. Chocolate has antioxidants in it that are good for the brain. That I can do.

Stage 3: Mild cognitive decline

This is a tricky point. The Alzheimer's Association says that early-stage Alzheimer's disease can be diagnose in "some, but not all," individuals with the symptoms recognizable to family and others close to the person having problems. These symptoms include problems with words and names, decreased ability to remember names of newly introduced people (oops, that one scares me – I forget new names all the time), unusual performance issues at work or in social settings, retaining little of material that has been recently read, losing or misplacing something of value to the person and/or a decline in the ability to plan and organize. We can chat with a doctor, and even request the cognitive tests at this point, but is this conclusive? This is still a point where a diagnosis could be a tough call. Yet, personally, I would suggest that if someone is very concerned, he or she should see a team of physicians uniquely qualified to diagnose dementia – and the often subtle differences between dementias – because this a point where some medications can help maintain better brain function longer into the disease. If we brush off worries too long, and then go for help, we may have lost valuable time. Still, this isn't a time to panic. Just get in, have a good general physical and perhaps see a qualified neuropsychologist that has experience with diagnosing dementia. Schedule any and all of the tests suggested by this expert. Follow through with all appointments. And then, get a grip. There is likely still room for doubt.

Stage 4: Moderate cognitive decline (Mild or early-stage Alzheimer's disease)

The Alzheimer's Association says that by now there are clear-cut indications that a careful medical examination can detect. There would be an obvious decrease in knowledge of recent events – personal and community and/or world. There would a decrease in the performance of the standard test where they ask someone to count backward from 75 by 7s, which scares me to death. I'd have to use my fingers to figure that out. Please, please, all of you doctors out there, make sure that you know in advance if the person you are evaluating is a math challenged English major. Less scary for me, is testing the capacity to perform tasks such as planning dinner for several people; however the ability to balance my checkbook is another one that I would rather not be tested on. I don't think I'd do well.

Again, remember that it is important to know how well did the person performed similar tasks, at an earlier time. I'm not kidding here. Some of us don't do so well with numbers, yet show no signs of dementia. Some of us don't comprehend what we read all that well, but that doesn't mean we have dementia. They are looking for changes here. That's why they do a lot of tests – to rule out the math impaired, like me; to rule out the organization impaired, like my son. These are characteristics that have been with us all of our lives.

Stage 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease)

Okay, this is where things get pretty obvious and serious. This is when the going gets rough for the caregiver and the frustration gets huge for most Alzheimer's patients. This is where

a great deal of the agitation occurs. People are aware that they aren't functioning normally, and it understandably makes them angry. They often take it out on the person or people they feel safest with – their spouse and/or their adult children. Those that are their caregivers. The Alzheimer's afflicted person will have major memory gaps, and people at this stage often need some help with daily living. This, my friends, is where I would have to stop blaming my right-brained thinking and if I were to have these problems, I likely would have to concede that I had dementia, probably of the Alzheimer's type. People in this stage are often unable to recall their current address or phone number. They may not remember where they graduated from school, can become confused not only about the date (not too hard to do) but the season, as well. They have trouble with easier arithmetic such as counting backward from 20 by 2s. They often need help choosing appropriate clothing for the occasion or even for the season. The Alzheimer's Association says that in stage 5, people usually retain "substantial knowledge about themselves," such as their own names and those of their children. They also, generally, do not need help eating or using the toilet.

Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)

This stage is where really significant personality changes can emerge. That sweet person you used to know suddenly is combative, volatile and possibly violent at times. The Alzheimer's Association says that at this stage, people lose "most awareness of recent experiences…as well as their surroundings." People in this stage can be very inventive, when trying to outwit the caregiver. They are also prone to wandering, so keeping them safe can be a challenge. They've been known to find ways to unlock several locks on doors and to enable a supposedly disabled car. They are not dumb, folks. This isn't about intelligence.

Caregivers have been known to remove and hide car batteries. People sometimes get alarms installed that are meant to let you know if someone is breaking in, but they get them so they know if their Alzheimer's afflicted loved one is breaking out. During this wandering prone stage, an Alzheimer's afflicted person must be watched carefully, as an unfortunate number of them have, literally, been stranded out in the cold. There are alarms and ID bracelets and other forms of protection on the market that can help keep track of, or find, someone who is wandering. Stage 6 is also a phase where, according to the National Alzheimer's Association, "(People) lose most awareness of recent experiences and events as well as of their surroundings." They often don't remember their own histories and can forget the names of people they love (though they usually recognize faces). They need help dressing and toileting. This, too, is the stage where the sleep cycle is greatly disturbed for this person (to say nothing of the caregiver's sleep cycle). Late day/early evening confusion, often called "sundowning," where the person is agitated and confused is thought to have to do with light and/or activity changes that trigger the Alzheimer's patient's need to do something important, but they don't know what (perhaps it's time to "go home from work?"). Whatever the cause, this is a difficult time of day for many caregivers and dementia patients. Stage 6 is also the phase where the caregiver will witness more paranoia or suspicions ("they are trying to steal my dentures"). Hallucinations are not at all uncommon, and compulsive behaviors such as picking, tissue shredding, scratching and hand-wringing can occur. This is often the phase where the person with Alzheimer's may need to be moved to a secure environment where they are safe and the caregiver can get some relief from the 24/7 job of caregiver (often that occurs earlier).

Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease) This phase, before death, is the sad time when speech is often unrecognizable, there is general incontinence, eating is difficult (or food refused – in any form) and swallowing can be impaired. They usually need assistance and support walking and even sitting. This stage was one that I found particularly hard for caregivers to tolerate, in that many become frantic when the Alzheimer's patient wouldn't eat. We, as healthy humans, get hungry. We think they must be starving. However, as the body prepares to die, it often does not want food. The organs are shutting down. I've shared, throughout all the phases, many a tearful session with caregiving friends. From Stage 3 on, this disease is a mind-bender to deal with. Each stage puts new demands on the caregiver. Education can help. Contact the National Alzheimer's Association or the Alzheimer's Foundation of America. The adjustment to the final stage, which will bring death, is one where hospice can support the caregiver, as well. Don't go through this alone. Caring for someone with Alzheimer's takes a super-human effort. This is a disease where community support can make all the difference. Get help for your loved one. Get help for yourself.