Saturday, March 6, 2010

Dementia-agitation, treatment

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.


deb said...

"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." As a certified hospice RN, I have seen many well cared for Alzheimer's patients in their homes. This would be the ultimate place to care for your loved one. It would lend familiarity and comfort possibly and enable some CGs to do "what they want" for their loved ones and that is to personally care for them.

Joseph J. Sivak MD said...

Home is the best place to care for someone, that's the point, and the more significant factor is the fact that many people can't afford, because they don't have the proper third party insurance, don't have the financial resources or can't afford out of their own pocket the luxury of a certified hospice RN. If your services are free, covered my medicare and/or MA then yes you're right everyone should have one. Hospice has generally been reserved for the terminally ill, but certainly most Alzheimer's families could use a break and have a regular supportive RN available on a very REGULAR and CONSISTENT basis IN the home.
Interesting you take one sentence from the post to enforce your preconceptions. Perhaps you should read more of the blog to understand what I am talking about,
There is nothing good emotionally about entering a nursing home, I cared for my mother with Alzheimer's as a kid, and that is where people with AD should live as long as they can, perhaps you missed that part or I didn't or don't emphasize it enough. I also lived through NH years and it is pure anguish, yet sometimes after a point, it is the most humane option for the victim and the caregiver family members. . No I am not pro-nursing home placement, but I also can't judge a families decision, if it gets to that point. If everyone gets the option to have a nurse in the home, then let's use it, and no once or twice a week for a few hours is great but it is never enough. And no the last month or two of the AD victims life is fine but it is not enough, particularly when the caregiver has suffered with the victim for years and years. and yes most caregivers work to heroic proportions as long as they can to care for their loved one at home-often at the expense of their own physical and psychological health. And yes it is dignified and honorable. in terms of making them happy, that is another issue and very complex. The happiness and respect and dignity of the hospice nurse and the support that can be offered to the family through the hospice nurse is wonderfully supportive to the family. But don't condense and confuse what makes the hospice nurse HAPPY with the caregivers HAPPINESS. The hospice nurse moves on to the next family, a caregiver moves on after they have lost a loved one, but maybe not in the same way the nurse moves on.
I hope you read my book when it comes out, if you still misunderstand what I am trying to say, well then I suppose paradoxically that is somehow validating. Thank you for your very evocative comment.

deb said...

I was fortunate enough to have received and read a complimentary copy of your book which is why I came to the blog site. You also mentioned NH over home care in your book which is why it struck me so. No one of 17 should have been the PCG for their mother and I do admire you and the ability you had to cope and care and write honestly about how you felt. Where was everyone else is what I wondered tho'? You were a child with grown siblings to assume your mother's care. I chose to care for my mom (who had colon cancer with eventual liver mets) while I was in my 30's and also had young children and even was fortunate to be able to move back to my home town to do so. Of 6 siblings, I was the oldest girl. I'm not sure my siblings could have done it and maybe that was the case with caring for your mother. I was not a nurse and had not heard of hospice until the last 2 months of my mother's life but they left a definite impact since I went to nursing school after my mother died. Hospice wasn't yet popular in the US to help you at that time but now treats many Alzheimer's, CHF, COPD, and any terminal disease that meet criteria. Maybe this info would help now with some of your families in your practice since insurance and medicare do pay for hospice. I was impressed with the book and it did broaden my knowledge but I thought you were a little self indulgent at times. I know caring for my mother was "an honor" (that ability to return the care given) since she became like a child also. Maybe you believe this too and it comes across as prideful. I think for the general public looking for info about Alzheimer's there could have been more relationship, disease issues, coping etc and less technical "political correctness" type comments-- if you get my drift.

Joseph J. Sivak MD said...

Thanks Deb,
I'm glad you at least didn't find it boring, or dishonest.
self-indulgent- it is a memoir,
NH Care over Home care-Nope
To me the term "over" means preferable to. That could not be further from the truth, the book speaks loud and clear on that issue. But I can't make the reader connect the dots, everyone takes from it what they will. As far as "getting past the author's personality" well what can one say. Some reader's will focus on the message and some will focus on the messenger. (That's about the reader) It is a memoir.
There are plenty (hundreds) of self-help books out there on AD, and there are plenty of Memoirs about AD. This one happens to be under the genre of autobiography medical (memoir).
The comments I make about a whole host of things, as being qualified in the book as "politically INcorrect" are not technical, they are opinions and the book covers that. (It is a memoir and like I said I can't make you, the reader connect the dots.) As far as leaving my hometown and my harsh judgement of the people of the midwest, in the book, well there are lovely and not so lovely people in the upper midwest just like Texas or anywhere. When one speaks of such terms as "judgement", well then I guess it makes people take a look in the mirror, or lash out or both or whatever.
It sounds like you had quite a journey with your mother's cancer, and this book seems to have struck a nerve. You seem to have quite a story to tell yourself, you should try writing about it if you have not already done so.

Regarding Medicare and Medicaid, and hospice, it is an out of touch blanket statement in regard to ALZ to say Medicare and medicaid cover hospice There is no question that hospice is still for end of life. As you may or may not know, medicare benefits although federal, vary by state and region. so does MA. There is no question that the vast majority of hospice at the END of life is covered sometimes a lot or totally and sometimes partially. It varies once again by state. The misleading part when it comes to ALZ disease is that the END of life goes on for years not for months, and the services hospice provides, if you can get them, is nominal compared to what is needed for the AD family over years not months. I certainly hope that improves, if you actually read earlier posts in this blog you would know pretty much the population I treat falls mostly under MA and Medicare. It;s not something I pontificate about it is something I live every day hundreds of times a month but I don't want the truth to be distorted into me sounding "egotistical", it is just simply knowledge through experience.
Once again I thank you for your review and opinion. If it provoked you even to the point of telling me how I should and should not have written my memoir, then I guess it was a 'good read'. Like I said maybe you should write.
I wish you the best.

Anonymous said...

Interesting post about Dementia-agitation, treatment, in these days illness of any kind is very common and people have to try to be careful with their health, for example I unfortunately use viagra online only because I need it and well Im close to be a senior citizen.

Talking about the book with the Lake Superior wind....... a calm day