Nationwide, some 5.2 million Americans have Alzheimer’s or another form of dementia. When their care falls to a loved one, such as yourself, their actions and behaviors can become challenging, to say the least. We know they can be frustrating, embarrassing and even dangerous.
It’s important, however, for you to understand that they are not purposely trying to be difficult. Everything your loved one is trying to communicate is being filtered through a disease. Their behavior has a purpose. It has been triggered by something. And what you see or hear may only be the only form of communication they have available.
The key to managing challenging or troubling behavior is to be positive, flexible, creative and compassionate. You can’t change what they are doing. So the best course of action is to change how you are responding to it or change the physical environment. Don’t take things personally. Try to maintain your sense of humor. And remember that what works today, may not work tomorrow.
Finally, don’t be afraid to reach out for help. Check in with the doctor to see if there might be an underlying medical reason for the behavior. Take a break to take part in a support group. And, if necessary, dial 911, making them aware that your loved one has dementia, may act erratically and may not follow commands.
What’s Causing the Behavior?
The Alzheimer’s Association recommends a three-step approach to identifying the cause of the behavior and what you can learn from it:
- Examine the behavior
- What was the behavior? Was it harmful?
- Did something trigger it?
- What happened immediately after?
- Could something be causing the person pain?
- Could this be related to medications or illness? Consult a physician to be sure.
- Explore potential solutions
- Are the person’s needs being met?
- Can adapting the surroundings comfort the person?
- How can you change your reaction or approach?
- Try different responses
- Did your new response help?
- Do you need to explore other potential solutions? If so, what can you do differently?
What Should You Do When the Behavior Occurs?
As the course of dementia progresses, different behaviors may come and go, worsen or lessen. Both you and your loved one will have good and bad days. By understanding troubling behaviors and trying to plan for them, you’ll be more successful in communicating with them and coping with the behaviors when they occur.
Anger and Aggression
- Shouting, name-calling, hitting or pushing may be caused by pain or stress
- React by staying calm and trying to determine the source of the behavior
- Ask yourself, “What was occurring just before the outburst?”
- Validate their feelings and seek to soothe or distract them with a snack or different activity
- Like Anger or Aggression, agitation can be triggered by a variety things, including environmental factors, fear or fatigue
- Try reducing the noise or the number of people or relocating to a quieter area
- Don’t attempt to restrain them
- Reduce caffeine and/or sugar intake
- And maintain a regular routine amid familiar objects and photographs
- “Sundowning” occurs as agitation and restlessness gets worse towards the end of the day and can continue through the night
- Monitor their diet, limiting sugar and caffeine to early in the day
- Turn on the lights well before sunset and draw the curtains to minimize shadows
- Block off stairs with gates, lock the doors to the kitchen and bathroom and/or put away dangerous items
- If needed, consider talking with the doctor about medication, but be aware that this may solve one problem but create another
- Ensure that you are getting enough sleep by asking a friend, relative or caregiver to assist
Forgetfulness and Confusion
- Memory loss and confusion are, unfortunately, part and parcel of dementia
- Be patient with answering questions and don’t overwhelm them with a complex response. If a truthful answer will only bring up painful memories, confusion or distress, don’t feel morally compromised by lying or “therapeutically fibbing”
- When it becomes painful to longer be recognized, reach out for help to clergy or a support group
Repetitive Speech or Actions
- Individuals with dementia often repeat words, statements, questions or action over and over—which can often mean they are just searching for reassurance, comfort, security or familiarity
- Avoid reminding them they just asked that question and instead try to refocus the person with a snack or other activity
- If they continue to repeat the question, try writing the answer down and posting it in a prominent location such as the kitchen table—“Dinner is at 5:00”
- Don’t discuss future plans until just prior to an event
- Learn to recognize behaviors such as pulling at clothing that could indicate a need to use the bathroom
- Try to understand that what your loved one is experiencing is very real to them
- Respond to any accusation by reassuring and comforting them
- Don’t argue or disagree
- Offer to help them look for a missing item and lead them into another activity
- While wandering may seem aimless, understand that it may be due to anxiety, boredom, medication side effects or the need to find something or someone (which may or may not exist or even be alive)
- Consider a physical need—such as thirst, hunger, the need to use a toilet or exercise
- It may result from the need to recreate a familiar routine, such as going to work
- Make time for regular exercise and, if possible, consider safe outdoor activities such as accompanied walk or gardening
- Install additional locks or bolts either high or low on the door as many people with dementia will not think to look beyond eye level
- If they wouldn’t consider leaving the house without a purse, coat or glasses, consider putting them up when not needed
- Make sure that they wear an ID bracelet, sew ID labels in their clothes, have a current photo available, ensure that neighbors are aware that wandering may occur and that they have your phone number
- Loss of bowel or bladder control is common and can result from not remembering where the bathroom is located or not remembering how to undress
- Understanding and reassurance will help them minimize embarrassment and maintain their dignity
- Try to establish a routine for visits to the bathroom
- Schedule fluid intake frequently enough to prevent dehydration but limit it in the evening before bedtime
- Purchase easy-to-remove clothing
- Consider posting signs (with illustrations) to direct them to the bathroom
- Individuals with dementia may literally forget that they need to eat or drink
- Medication may also decrease appetite or make food taste bad
- Make meals and snack times part of the daily routine at the same time and place
- As they may mimic your actions, eat with them
- Avoid distractions at mealtime by turning off the television
- As they may forget the use of forks and knives, provide finger foods that have been pre-cut into bite-sized and seasoned
- Like eating, people with dementia may not remember their previous habits of bathing, brushing their teeth, toileting or changing their clothes
- Try to recreate their past routines as much as possible to ensure a sense of familiarity
- Realize that being undressed, bathed or cleansed by a “stranger” may be frightening, humiliating or embarrassing to them
- Enhance any feeling of privacy by closing doors or curtains and use a towel to cover them
- Pay attention to the temperature of the room and/or the water being used
- Have everything you’ll need laid out in advance and water for bathing already drawn
- Ensure there are safety features such as non-slip mats, grab bars, shower seats and hand-held showers
- If washing their hair proves difficult, try making it a separate activity or use a dry shampoo
- Shadowing occurs when someone with dementia imitates or follows the caregiver, constantly talking, asking questions or interrupting
- Like Sundowning, this usually occurs late in the day
- Seek to comfort the person with verbal or physical reassurance
- Giving them a task to perform or distracting them with another activity may help
- The lack of memory and dexterity makes something as common as dressing difficult
- Select loose-fitting clothing with Velcro, zippers or snaps
- Reduce choices by eliminating unused clothing from the closet
- Lay out articles to wear one at a time, in the order it is to be worn
- Remove soiled clothes from the room
- Don’t argue if they wish to wear the same thing again and again
- Understand that any hallucinations or delusions are real to the person with dementia
- Avoid arguing or trying to convince them that they are wrong
- Remain calm and reassure them of your presence and concern
- Offer simple explanations for any loud noises or distracting lights
- Keep rooms well-lit to avoid shadows
- If necessary, speak with the doctor about medication
Sexually Inappropriate Behavior
- Undressing in public, lewd remarks, unreasonable sexual demands or masturbating may occur
- Develop a plan in advance as to what you will say or do should these actions occur around others
- If possible, try to identify what triggers the behavior and eliminate it
If you know what’s causes troubling dementia-related behavior, you will be better equipped to handle it when it occurs. Have patience. Walk away if you need to. Laugh when you can. And know that as you journey along the gray mile you’re dealing with a disease process—not the one you love and who deep inside still loves you.