Expert: Mary Gordon - 5/7/2009

Question
Hello, my dad is 72 years of age, had a stroke 14 years ago, currently has vascular dementia.  His behavior has escalated within the past 30 days.  He was residing in a NHCU.  They become unable to take care of his ADLs without agitation.  He was sent to a psych facility to get meds adjusted.  At that psych facility he walked onto the unit and was communicative upon arrival.  He was TX for the agitation with multiple doses of Haldol.  He lost approximately 30 lbs because he was not eating, he was sleeping through all meals.  It took multiple attempts to have the psychiatrist listen to our concerns.  When he did, he d/c'd the Haldol, however said that he would try replacement meds and d/c him back to his facility after my dad had met 3 days without medication.  Yesterday, was the 30th day at the inpatient hospital and they d/c'd him back to the prior NHCU.  Upon arrival my dad has been enraged, unable to manage for care.  I need someone to talk to about how the medication makes this happen, the meds totally escalated the bad and unmanageable behaviors.  It seems to me that my dad needs a "drug holiday" so that he can started on new meds and see how he responds one drug at a time.  I know from my past of working in psych Haldol is a "bad side-effect drug of choice"...what is the current drug that can help with agitation and aggressive behaviors.  Please if you can help in anyway, I would love to hear your response.

Answer
Hi Penny

I'm sorry to hear your poor dad is feeling so upset. It must be distressing to you to see him in such a state and not know how to help him feel calmer.

Have the staff been observing what sets him off? What have they tried?  How well do they know your dad? How flexible are they? Has the doctor ruled out any changes to his physical health that could increase his agitation?

The usual drill looks for the following.

1. Physical problems: Hunger, illness, medications, or other causes of physical discomfort may lie behind the behavioral changes. Have they checked him out properly physically? Sudden changes in behavior can come from undetected problems, pain etc.

2. Environmental triggers: Do noise or activity levels increase at particular times of the day at the nursing home?  Are there too many visitors and bustle at certain times? Is there a noisy TV?  Are the lights too bright? Are there mirrors in the bathroom that might confuse or upset him? Are there particular caregivers who trigger distress in him? My mother in law, for example, took it into her head that a short haired female caregiver was actually a man, and she'd get really upset if that person tried to help with dressing or bathing.

3. Approach. How do they approach him? Are they watching him for signs of impending distress so they can back off temporarily. Are they aware of specific triggers? Are they pushy and aggressive, or gentle and flexible. Are they rushing him? Do particular staff upset him more than others? Have you been around to watch what they are doing to see if you can offer some suggestions (you might have a better eye for when he's getting close to an explosion). Toiletting and bathing are the big two for setting off "catastrophic reactions".

4. Timing - sometimes it helps to restrict stimulating activities, such as bath times, to earlier in the day. People with dementia are less able to tolerate activity and commotion toward the end of the day when they are tired. If he's at his best at a particular part of the day - usually when he's rested, fed, and calm, that's a better time to tackle something a bit stressful.

5.  Encourage exercise: Physical activity such as daily walks may help burn up excess energy.

6. Are they watching his diet? Caffeine can increase agitation. Is he getting healthy snacks that might help prevent behavior problems associated with fatigue or hunger.

7. Simplify surroundings: Have a look at the visual clutter in the nursing home and be sure the bathroom and other areas visited by your dad are clearly marked, free of obstacles, and well lit. As I mentioned, something as simple as big mirrors can be confusing (i.e. they may not recognize themselves and may think its a stranger). He may also have perception problems and can see dark items as holes (i.e. a checkerboard tile floor can look really scary).  Again, this is part of watching him carefully to see what sets him off. They can also have altered physical sensation - and for example feel shower water as hotter than it is, or like needles on their skin. They may feel upset and exposed being naked, or feel colder than you or I would.

8. Do they offer reassurance and comfort: Speak softly and calmly, use soothing touch, and reassure your dad that he is safe. Offering a favorite stuffed animal or playing quiet music can be helpful. Do the staff meet his aggression with aggression of his own, or can they stay very calm, soothing and reassuring.

9. Meds....which is last on my list for a reason!! If they are going to use meds, it has to be part of a total approach, which includes the kind of behavioral and environmental management options I've outlined - it can't be in isolation. It's just not realistic to expect a drug to magically "fix" what is usually a fairly complex problem. Your dad is reacting to something - there has to be a level of discomfort that sets him off, whether its psychological or physical. My bias is also for minimal use of meds, and for short term use as much as possible - as you observe, the risks of unwanted side effects and other adverse outcomes is pretty high with people who have dementia.  

Is he in a specialized dementia unit, or a general purpose nursing home ward. If he's just in a usual nursing home, you might want to look into a more specialized facility, where the staff might be better experienced in dealing with agitation and how to head it off.  I mention this because I really wonder what they tried before they slapped the "problem" label on him and packed him off to the psych ward.

I also wonder what other meds they could have tried. Although the atypical antipsychotics (like quetiapine, risperidone, and olanzapine) are associated with a higher risk for dementia patients, so is haldol - and at this point, with his lifespan limited by his progressing dementia alone, it might be worth trying something else.  It's obvious the haldol should go on the scrap heap for him. Tried it, did not work, out, out, out!! As you probably know, there are lots of studies that suggest haldol doesn't work very well for agitation in people like your dad - never mind the potential side effects.   

Here's a good overview article
http://www.ccjm.org/content/76/3/167.full

I'm with you - they do need to look at your dad's behavior as a total package, and use drugs as just part of the solution (and only then if everything else isn't working).

Hope this helps. Sounds like the shrink who was in charge of him was fairly clueless. How could they let him lose that much weight and not back off immediately.

Mary G.