If you should be experiencing the illness of loved ones or if you are caring for patients in a health care setting, it is essential that someone become their advocate; even more so, it is necessary if they are afflicted with Alzheimer’s disease or some other form of dementia. Being their voice may mean you will have to explain what you believe is ailing them, to a medical professional or to their physicians. This becomes especially important during the latter stages of the disease. You will likely be required to differentiate between symptoms which can appear strangely like one another.
I have noticed two mental conditions which the general public commonly mistake as being the same thing: hallucinations and delusions.
A delusion is a fictional belief about something, someone or even about one’s self. For instance, a common delusion that occurs within Alzheimer’s patients is the notion that everyone is stealing from them, taking all their prized possessions.
Suspicion and delusions seem to go hand in hand.
Hallucinations, on the other hand, are false perceptions of objects, people, or events. They are not only visible to the person experiencing them, but can be heard, smelled, and tasted by the patient. The hallucinations can become very frightening and confusing, therefore, exceedingly difficult for caregivers to co-ordinate.
Discuss this matter with physicians. There are medications that may help. If these hallucinations are scaring your patients who, in turn, are building up high levels of anxiety, and redirection will not work, their doctors may want to prescribe something that will.
This, however, is where it is so important for the patient to be correctly diagnosed with the type of dementia-related disease he or she has. If it is determined that it is Lewy body dementia, the antipsychotic medications should be avoided.
At about nine o’clock one morning my dad began showing signs of being delusional and became extremely upset. “They’re breaking into the building next door! All the tools behind the building are being stolen!” Over and over Dad insisted upon this, quite loudly, throughout the entire day. The thing is, the other building was not even visible from the house; but he insisted that he saw at least five guys “over there” breaking in.
Finally, I walked him “over there,” across the field. I repeated this walk with him five times in hopes that it would settle him down. At last, around 5:00 p.m., I just couldn’t take it anymore.
I phoned my sister and begged her to drop everything she was doing and come over immediately. Upon her arrival she suggested that I should get away and take a break for a while. I responded that the only thing I wanted to do at that moment was to get some sleep!
Delusional behavior is only one of the cruel effects of dementia-related diseases and was one of the hardest for me to bear. At that point, Dad had been suffering from this pillaging disease for practically a decade, and what I’ve just described is one of its most heart-rending facets.
Again, hallucinations and delusions are two of the most strenuous side effects for caregivers to contend with. You will really need to call upon all of your endurance in order to avoid losing your patience. Exhibiting signs of frustration will only make matters worse.
Years ago, on a Memorial Day weekend, Dad took a gander out the kitchen window and asked, “What are those twenty-five people doing having dinner in our backyard?” Something similar may very well happen with your patient.
If it does happen that your patient honestly believes he or she is witnessing something, do not turn it into a debate. Period! Instead, be affirming with, “I just went out and checked. No picnic now! They must have just left.” You might have to actually take a walk outside and circle the house. (At this point you probably need some fresh air and some good ol’dirt kicking anyway.) Whatever you do, don’t get into an argument. It will only twist things further and you both will likely be headed for hours of extended madness.
There were many times it became necessary to call for back-up because I could not handle Dad’s hallucinations one more minute. Like a “horse rode too hard and put up wet,” I needed open pasture. Get the point? Dementia patients can use you up.
At this point during my campaign with dad I had considered myself to be a seasoned caregiver, but upon retrospect, it is now easy to admit that the mental madness of these hallucinations and delusions can take even the best of us down.
What is utterly amazing is that such fallacies we have discussed may remain in patients’ minds sometimes for days, but then something that just happened two minutes ago will no longer exist. True or not, what these folks believe they are seeing is as real to them as the ground we’re standing on.
Gary Joseph LeBlanc, CDCS
Director of Education
Dementia Spotlight Foundation