Now one of the biggest
stressors for family members is what do you do if your loved one with Alzheimer's is agitated and lashing out, or agitated and wandering off at night. What if they are moving about and wandering and confused? Are they more likely to fall and get hurt? Sometimes. This is typically a problem in the later stages of Alzheimer's and not all people in the later stages of Alzheimer's get agitated. Some do, they may even get violent. Remember this is the disease and not your loved one.
Yes it is true that there are people who have a history of violence and anger and agitation well before they develop Alzheimer's. Think of the violent or antisocial or sociopath. In my world as a psychiatrist those problems are all too common, but for the sake of those reading this blog, violent, dangerous people are the exception and really not that common in society. Yes violent dangerous sociopaths are people too, and I as a physician get to treat them with compassion, dignity and human respect, no matter how much I disagree with their values and the choices they have made. Another profoundly stressful thing at times which goes with being a professional and a physician. Another fact that is overlooked and very taboo and considered maybe even unprofessional to even admit, but yet very, very true. By the way as another aside, most people with mental illness are not violent or dangerous, especially schizophrenics, another fact commonly overlooked. enough digression and back to dementia.
Lets assume your loved one with AD was once a decent citizen, with no history of violence or agitation or any history of ever hurting other people. Now they are physically lashing out. Remember it is not them it is the disease, it seems to change personality, remember. Uncharacteristic behaviors emerge. Maybe your loved one is now taking their clothes of or making becoming hypersexual and inappropriate in that area. Remember it is the disease not your loved one.
Hypersexuality, wandering, violent aggression. It does not happen to everyone in the later stages of AD, but it does happen and it happens a lot. It is awful, it feels indignant and it is humiliating to live through as a loved one. It is something that many face and it probably is not addressed enough, because it is such an uncomfortable topic. Typically it is seen in the nursing home setting, when caring for the loved one at home has just gotten to be too unsafe. And yes there are people with AD living at home in the later stages who for whatever reasons, financial, guilt, emotional exhaustion, lack of resources, isolation or whatever just can't or won't place their loved one in a nursing home or assisted living. Every situation is unique and can't be judged either way. Entering a nursing home is a terribly emotional and painful situation for a family and a person with dementia. Sadly it is quite inevitable for many, if only for safety reasons, which is a big reason.
so what do you do to treat these problems of aggression or wandering or hypersexuality? Obviously you have to help the person calm down. There are basically three ways to do this. The most humane which does not always work is environment. A soothing calming relaxing environment. Soft calming music, maybe from your loved ones era. Reasonable lighting, enough light but not overpowering. Activities, attention, calmly talking to and with your loved one. Decent nutrition, some nursing home and assisted living facilities are better at this than others. Like anything else, some are great and some not, most claim to be, and if the environment, is the best thing to treat the agitating behaviors. Sadly it does not always work. Another problem often overlooked is when you take a person out of their home environment after 40 or 50 years, because it is just not safe, the new and foreign environment can sometimes lead to or make agitation worse. Why wouldn't it? Sometimes it settles down with time and sometimes not.
The second way to deal with aggression or lashing out, is physical restraint.
The posey, that thing that looks like a net that fits across the torso of a person and keeps them belted if you will in a chair. nobody wants to see this. It feels indignant and inhumane. We get angry at the doctor, the staff, and everyone else. The alternative is wandering, falling, assaulting other staff or residents. It is awful. There are various rules and laws regarding this, but when it is considered unsafe, sometimes the facility has to resort to this. some may use it more than others, that depends on the rest of the environment and your loved ones symptoms they are displaying. It is profoundly painful for loved ones to see this, it stirs up every raw ugly painful emotion associated with the diabolical disease.
The third way to treat violence and aggression or wandering is chemical sedation/restraint. Now the obvious problem usually overlooked but faced by thousands every single day, is that fact that calming your loved one down with meds can mentally slow them down more. They can become too sedated and sluggish making the Alzheimer's seem much worse. Obviously ideally a balance has to be struck. calm but not sedated is the goal. Right? This lead to the common dynamics of the meds actually becoming more of a villain. Throw in the fact that the doctor only seems to spend a couple minutes with the patient and does not see them that often and you have lots of high emotion and tension. some docs are way better than others, but I promise you no matter how much time the doctor spends with you, is kind, caring and compassionate, it can never be enough. That is the nature of the disease. remember most docs may have ten or twenty of fifty other families going through the same thing. A good doc will never ever say I have more patients to get to. In medicine, unlike anything else, patients are not customers, they are patients, and moreover they are people. That is regardless of the fact that the health care system seems to be moving in a most negligible direction, with the doctor patient relationship, continuously being placed as the lowest priority, regardless of what anyone tells you. I could digress into that issue all day, but suffice to say despite all the realities of our society and the health care debacle most docs went into medicine to help people like your loved one, some are way better than others at conveying compassion and empathy, it is a fit or a chemistry, and you know when you have a good one. Remember just about every issue in the geopolitical world, demands the doctor to be this way, and presents an environment and situation where it is becoming almost inhumanely possible to do this. The good docs don't make excuses. Back to the meds, there are many that are used to calm, sedate, and yes chemically restrain persons with AD. I have previously written about SSRI's and touched on antipsychotics. They have there own host of problems and warnings in dementia patients. It creates another quandary. What to do, no perfect med or situation, regardless of what anyone tells you, each situation is unique, sometimes the meds work wonders, not cognitively clouding the patient yet treating the aggression or wandering or hypersexuality quite effectively. sometimes not. Sometimes the meds increase the likelihood of taking a fall. Sometimes they decrease wandering and the likelihood of taking a fall.
The meds to treat AD specifically, aricept, exelon, namenda etc, sometimes help these symptoms and sometimes can make the aggression worse. There are several classes of meds used, and each person responds slightly differently. In future posts I will try to cover the salient features of the common meds and classes of meds used in people with AD.
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