Expert: Mary Gordon - 9/8/2008

Question
My mother is in an assisted living facility.  She has Alzheimer's and vascular dementia. She still has some independence with daily personal care.  However, she has become quite paranoid particularly in the evenings after supper.  She thinks someone is going to murder her and calls and calls family members wanting us to come and get her.  While we visit often, we can't be there all the time.  How can we help her fear?

Answer
Hi Nancy. The behavior you are describing, increased agitation later in the day, is extremely common. It is so common, it has a colloquial name - "sundowning".

No one is sure what causes it. Some research suggests that sundowning is a product of disturbances to circadian rhythm that are brought on by the brain damage.  People with dementia, whether from Alzheimer's or other causes tend to tire easily, even with very few demands on their thinking ability and coping skills. Just like small children, they generally become more restless and difficult to manage when tired. They have a very much reduced ability to tolerate stressful situations when they are not at their best.

At the end of the day, there is a lot of activity going on - the evening meal, evening activities, getting prepared for bed. That is a lot to cope with, when the person may be  tired or hungry, uncomfortable, in pain, or in need to use a toilet, all of which may be expressed through restlessness.

Another contributing factor can be related to lack of sensory stimulation after dark. At night, there are fewer cues in the environment, with the dim lights and absence of noises from routine daytime activity. As the dementia progresses and the person understands less about what is happening around them, they become more frantic in trying to restore their sense of familiarity or security.

Many caregivers will notice that the person becomes more anxious about ‘going home’ or ‘finding mother’ late in the day, which may indicate a need for security and protection. They may be trying to find an environment that is familiar to them, particularly a place that was familiar to them at an earlier time in their life when things made sense, and they understood their place in the world.

Usually, the preferred approach is to try to make late afternoons and evenings as simple and relaxing as possible.  Stressful activities like bathing are often better scheduled for earlier in the day, when they better able to cope. Their environment should be as serene and peaceful as it can be kept - often bustle, staff shift changes, the noise and lights from TV or radio - all of this is distracting and may make things worse.

Some people are comforted by a soft toy, or by a walk, a backrub, a hug, some warm milk. Mostly what they need is to be reassured.

As you've doubtless discovered, it doesn't pay to argue with a person with dementia. You have to listen to the underlying emotional content of what they are saying, not the factual information, which may not make much sense, and can't be argued with. You know their "reasoner" is broken, but they don't!  What they are telling you is that they are scared, they are worried, they need to be told everything is okay and that the people they love are okay.  Sometimes redirection will help get them out of an anxiety groove (i.e. providing a low stress activity for them to focus on, perhaps looking a picture book).

It would be worth having a discussion with the staff at the facility, and her doctor to develop a strategy.  I know many of these ideas may be difficult to put into practice with her in a care facility. If the facility can't do much to change their routine, or help head off her anxiety with calming measures, it might be worth asking the doctor about trying some medications. Sometimes a mild sedative will help with the agitation, or a low dose of an antipsychotic, or even melatonin . The doctor should also review her physical condition to make sure that she is not in pain or discomfort (such from an undiagnosed UTI for example) that might contribute to agitation.

Hope this helps. I know how distressing it is when someone you love is upset, and you can't seem to help them feel reassured and more comfortable.

Mary G.