Sometimes those difficult to manage behaviors we see in some people with Alzheimer's disease continue for long periods of time and even worsen. It is very distressing and frustrating for clinicians, caregivers, staff in residential homes, their fellow residents and visitors. I can recall many patients whose disturbing and disruptive behavior made the lives of those around them very difficult. The whole community suffered along with the patient and it caused disruption and tested the patience of everyone.
One woman would shout and call out to her long dead sister, "Doll, where are you Doll?" Over and over. Distraction, activities, changes in her environment had little effect on her repetitive vocalizations. At meal times her cries would prevent her from eating and drinking enough and her pacing and searches for her sister resulted in weight loss and increasingly poor health.
Another man I helped care for with Alzheimer's, and who had severe mobility and skin problems, would resist and refuse to cooperate in any way with helping him get up, washed and dressed. His skin condition and vulnerability to pressure sores meant there was no alternative to the morning ritual of avoiding his kicks, slaps and bites and staff were, understandably, very reluctant when they were allocated to his daily care! We tried:
- Various treatment and nursing care plans, but little seemed to work. Drug changes were tried. Medications can never have a 100% response rate, even an 80% rate of success in this type of situation. Mark Agronin, MD, believes that realistically 20% to 40% of patients with agitation, and or psychosis 'do not respond to medication trials even under the best circumstances'. So for people with treatment resistant symptoms there are a number of options that need to be taken and caregivers need to ask their doctor for a though assessment of the patient's mental and physical condition.
- A reassessment of the patient's diagnosis. Was there a new coexisting disease that required treatment?
- Where there underlying medical problems like medication side effects, or pain triggering the problems.
- Was the environment the cause?
- So - reassess medication trials. Look at whether the doses were adequate, and used for sufficient lengths of time. Did the patient take the medication(s)? Were the medications being given correctly?
This was one area that when I worked in secure hospitals and behaviors were presenting major problems in other institutions that we found needed a complete reassessment. Multiple medications had often been introduced as behaviors had escalated in an attempt to cope with the patient. It meant that it was almost completely impossible to work out what medications were the most effective. We often would stop all medication (we had high staff levels ) and had the experience necessary to assess just what was going on for the patient. New medications needed to be carefully monitored and introduced in a way that avoided the above.
- Occasionally there is a paradoxical effect with some psychotropic medications and they can make the symptoms worse.
- Investigating the patient's medical and social history thoroughly can reveal reasons why the patient acts and responds in certain ways. Often this type of information is lost over time and a disease is seen as a cause of behavior in isolation to previous personality characteristics. A behavior plan and consistent approach by caregivers using this information can change challenging behaviors dramatically. Relatives and primary family caregivers are often very happy to help and contribute to help a loved one.
Remember there may be legal requirements, sometimes lengthy, with family cooperation and resources to obtain guardianship or mandated treatment plans that protect the patient from abuse.
In the situation where treatments for problems behaviors have failed to respond in the past, the saying of 'if at first you don't succeed try, try again' helps. We cannot give up, we just have to keep on re-evaluating until we find treatment approaches that work better.