Expert: Mary Gordon - 9/28/2004

Question
Mary,
My dad has the disease and as of now my Mom is caring for him at home. They live in a guest house on my property so I am right here to help.
Dad has become harder and harder to get into bed at night, and after going to the restroom during the night. He is in Depends but he still gets up to go and that means my Mom must go also because if not, he will go anywhere,(Closet, kitchen trash can and etc). Sometimes its 20 to 25 minutes before she can get him to sit on the bed and lay down. He just stands stiff legged and acts scared or stubborn.
Did you have this problem and what did you do?
Also when she is trying to make him lay down he sometimes makes a fist and and says or tries to say he will hit her. So far she has said, You better not, and then he says "I would not hurt you ever." or nothing at all. He has never even hit at her although he has threaten.
Also, sometimes he acts totally out of it and then in five minutes gets up and walks almost normally. Is this part of the disease or could Dad possibly be being stuborn? Everything we read says no but sometimes it sure seems like it to her.
Thanks ahead for your help.
Melody Conklin

Answer
Hi Melody,

I know it may look like your dad is being stubborn, but whats happening is something that happens to about 25% of Alzheimer's patients in the midstages of the disease. Its called "sundown syndrome" or sundowning - so its an extremely common behaviour. It involves episodes of confusion, anxiety, agitation, aggression or disorientation that often occur at dusk and into the evening hours. The episodes may last a few hours or throughout the night.

Sleeping problems experienced by persons with Alzheimer's and caregiver exhaustion are two of the most common reasons people with Alzheimer's are eventually placed in nursing homes. Bowel incontinence is the other biggie.

The other aspect of mid-AD behaviour your mother is seeing a bit of is called a catastrophic reaction. Many people with AD are basically hanging on by their fingernails - they get easily frustrated and overwhelmed if there is too much stimulation, if there are too many demands on them, such as when someone is trying to get them to do something like take a bath or get ready for bed. Your father is lashing out - it isn't intentional - he's kind of like a toddler emotionally - when he is pushed to do something he doesn't understand or doesn't want to do, he will implusively and aggressively react. It can be serious, particularly if he is large and strong.  

Evening and nighttime restlessness doesn't last forever. It typically peaks in the middle stages, then diminishes as the disease progresses. In the meantime, your mother should make sure their home is safe and secure, especially since your father wanders at night. She might want to restrict access to certain rooms where she doesn't want him to go unsupervised by closing and locking doors, or installing tall safety gates between rooms. She should make sure there are no slip or trip hazards, and that he can't get out exterior doors.

While the exact cause of these behaviours is not known, experts believe there are several contributing factors. The disruption of sleep-wake cycles is common in persons with mid-stage dementia. The parts of the brain that control daily sleep-wake cycles can be damaged by all types of dementia and the body's internal clock is often reset by these brain abnormalities. Other factors include physical and mental exhaustion from a long day of trying to cope with a confusing world, reduced lighting and shadows causing visual confusion, stress from the evening bustle of activities like dinner, clean up and bed routines etc.

Sundown syndrome can be draining for the person with Alzheimer's disease and his caregivers, as I know you are seeing for yourself. Here are some suggestions for helping a loved one with sundown syndrome:

Schedule the day so that the more difficult tasks are done early in the day, when your dad is at his best and is less like to become agitated.

Watch your dad's diet and eating habits. Restrict sweets and drinks with caffeine to the morning hours. Try serving the him a late afternoon snack or early dinner. To help him relax, try decaffeinated herbal tea or warm milk.

Keep the house or room well lit in the evenings. Alzheimer's causes perceptual problems, and low light levels may make this worse (i.e. things are more confusing that usual in dimmer light, and that can add to his stress).

Close the drapes before the sun goes down, so he doesn't watch it become dark outside (we had a neighbour who got very upset by the dark - her days and nights were all mixed up, and she would rant about why "they" were making it dark!")

Plan more active days. A person who rests most of the day is likely to be awake at night. Discourage afternoon napping and plan activities, such as taking a walk, throughout the day.

Try distracting him with activities he enjoys. Soothing music or a favorite video may help, as well - no one ever succeeded in calming an agitated person with Alzheimers by trying to reason or argue with them. Reassuring,redirecting, diverting - all the things you would try with a small child are the best route.  

Seek medical advice. His doctor may be able to prescribe medication to help reduce agitation and help him relax at night. Physical ailments, such as bladder or incontinence problems, could be making it difficult to sleep. Depression can also cause sleep disruptions.

Once the person is awake and upset, experts suggest that caregivers:

Approach their loved one in a calm manner
Find out if there is something he or she needs
Gently remind him or her of the time
Avoid arguing or asking for explanations
Offer reassurance that everything is all right and everyone is safe

Given that your mother is getting exhausted, and she needs all her energy to cope, is there a way to either get some overnight help so someone can take a shift with him and let her sleep, or to get someone in in the day to let her catch a nap?

I hope this helps - your mother is lucky to have you near by.

This is a very difficult phase, and my heart goes out to you. A good general book on Alzheimer's is called The 36 Hour Day, by Mace and Rabin, published by Warner - you can get it just about anywhere, and its in softback, so its inexpensive. Its very, very helpful - full of insights to difficult behaviours, tips, descriptions of what may come next, and other information that will help you and your mother deal with your dad as this awful thing progresses.

You are in my thoughts.  

Mary Gordon
Toronto