Managing the Challenging Behaviors of Alzheimer's Disease
We all know that forgetfulness is a symptom of Alzheimer's disease. But as language skills diminish, more disturbing behaviors may develop. The Mayo Clinic explains that damage to the brain's neurotransmitters, can cause your loved one to act out in new ways. These new behaviors can often be quite shocking to family members.
Laura Wayman, Gerontologist, dementia-care expert, and author of "A Loving Approach to Dementia Care" says, "I tell family caregivers that they need to start thinking of a loved one's brain like a piece of Swiss cheese, which has random holes in it. The disease is robbing them of brain cells that allow them to function normally." She explains that when a person with Alzheimer's tries to access the functionality of their brain, they may either access "cheese" (a lucid moment), or a "hole" (a confused moment in which they frantically try to compensate for memory loss with bizarre behaviors, often linked to feelings and memories from their past).
Being aware of these physiological changes in the brain as well as some of the challenging behaviors that follow may help alleviate painful misunderstandings that a loved one with Alzheimer's is doing something to intentionally upset caregivers, and foster a peaceful co-existence throughout the progression of this disease.
8 Challenging Behaviors - And How to Cope
There are many ways that Alzheimer's manifests within different individuals and dealing with these behaviors can be as complex as the individual. It might exacerbate pre-existing traits, such as stubbornness, or serve as the catalyst for actions that are completely out of character. The authors of, "The 36-Hour Day," Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H. list a few common behaviors exhibited by individuals with Alzheimer's and tips for dealing with these challenging situations.
- Losing, hoarding, or hiding things. Often, Alzheimer's sufferers simply forget where they place things, other times they hide items for safekeeping -- an action triggered by a disease-induced paranoia.
Quick tips: Refrain from asking your loved one for the whereabouts of the item. Avoid future mishaps by keeping valuables at bay and locking some cupboards and drawers to limit hiding places. Check conspicuous places such as under mattresses and pillows and be sure to look through wastebaskets before disposing of trash. If your loved one is exhibiting paranoia, do not doubt the reality of their reports. Instead agree and give a reasonable explanation of what happened.
- Wandering. Alzheimer's patients may wander as a result of getting lost, being in a new setting or while attempting to find someone or something they've imagined. This can also be a sign that your loved one needs exercise, is suffering from boredom, is upset by something, or needs to use the toilet. Regardless, wandering is a serious symptom that makes living alone quite dangerous.
Quick tips: Watch for patterns to indicate what might prompt the pacing. Does this happen when they are asked to take a bath or at the same time each day? Frequently reassure loved ones of their whereabouts. Secure the home with locks or motion detectors and use nightlights in bedrooms and bathrooms to cut down on confusion in the dark. Be sure that your loved one wears a bracelet detailing contact information and stating that they are "memory-impaired," and have them carry a pocket card with simple instructions such as a telephone number to call.
» Learn how new technology can track Alzheimer's patients.
- Inappropriate sexual behavior. Accidental self exposure and aimless masturbation sometimes occur, but demands for sexual activity is very rare and is the direct result of brain damage.
Quick tips: Keep your reaction in check and calmly bring your loved one to the bathroom or help them put on a robe. If fidgeting with genitalia, simply bring them to a private place or distract them by giving them something else to do.
- Repetitious questions and actions. Sometimes Alzheimer's patients ask questions repeatedly because they forget the answers and sometimes it's a result of a worry they cannot express. On the other hand, repetitive behaviors, such as folding the same towel several times, are simply the brain "getting stuck."
Quick tips: Typically the individual with Alzheimer's does not want the answer to the question they are asking repeatedly. Often they are looking for reassurance or something to do. Try reassuring them with a phrase such as, "Everything is okay." To offset repetitive actions, touch can help break the brain out of a pattern and encourage them to engage in a new activity.
- Clinging. As a means of security and surrogate memory, those suffering from dementia often stick very close to caregivers, sometimes to the point of invasiveness.
Quick tips: Set a timer when leaving the room, letting your loved one know that you'll be back before the timer goes off or give them a task to keep them occupied, such as winding a ball of yarn. Lock the bathroom door when necessary, and be sure that you have a support system to give you enough personal time outside of caring for your loved one.
- Complaints and insults. Often the person closest to the one suffering from dementia gets the brunt of hurtful comments and behavior. Honest bluntness or misinterpretations of the situation such as, "My daughter locks me in here all day," are much like that from a child who hasn't learned manners yet or tries to make sense of a situation with limited knowledge.
Quick tips: It's important to understand that even though the person might look well, they are sick and brain function is altered. To avoid heated interactions, do not deny or correct the comments. You can explain behavior to visitors and try to change the subject or distract your loved one with something else.
If you and the person suffering from dementia have always had a tumultuous relationship it may be more difficult to view these complaints or insults objectively. In such a case it is often helpful to seek outside assistance from a therapist or senior care advisor who specializes in this work.
- Stubbornness and uncooperativeness. At times, obstinate behavior is a reaction to not remembering why it's being done, such as taking medication when they don't realize they are sick.
Quick tips: Stay flexible and compromise to avoid arguments. Use pleasant directives instead of inviting confrontation with open-ended questions and be sure that requests are understood. Simple reminders, such as "Can you smell our supper cooking?" often help. Or, offer incentives for completed tasks, such as ice cream following a doctor's appointment.
- Apathy or depression. Someone suffering from Alzheimer's may withdraw and lose zest for life, feeling listless and unmotivated. Depression can also be expressed through crying jags, weight loss, or fatigue.
Quick tips: Acknowledge your loved one's feelings and discuss these behaviors with their physician, as depression can often be treated with medication. Encourage activity that can be completed successfully and compliment the accomplishment of even the smallest tasks. Music, animals, or old photographs often serve as wonderful props to lift spirits.
Tracking the Challenging Behaviors
According to Joanne Koenig Coste author of "Learning to Speak Alzheimer's," the most useful tool for dealing with these behaviors is to keep a disease behavior log. While this may seem daunting along with all of your other responsibilities, it may help clearly identify underlying causes and alleviate future incidents. For instance, you might discover that your loved one is actually experiencing hallucinations from medications as opposed to misperceptions common among Alzheimer's patients.
Overall, keeping in mind that the disease is the culprit to blame for undesirable behaviors, not the person, will help you provide the compassionate care so vital to those suffering from Alzheimer's. Validating your loved one's very real emotions before redirecting behaviors and avoiding responding to nonsensical requests with a resounding "no" can also mitigate catastrophic reactions and help patients maintain a sense of dignity. Wayman says, "Frequently, caregivers can redirect behavior simply by communicating on the level of the person with dementia. Visit their dementia wonderland' by addressing past memories as if they were current memories." For instance, when a loved one insists that her sister (who died 20 years ago) is picking her up to go shopping, ask her what time instead of explaining that her sister is deceased. Wayman's book suggests several ways to create these "meaningful moments" and better connect with loved ones suffering from dementia.
Care for the Caregiver
Nearly 15 million Americans provide unpaid care for those with Alzheimer's or another form of dementia. According to the Alzheimer's Association, the demands placed upon the caregiver of an Alzheimer's patient can often feel overwhelming, causing a gamut of emotions ranging from anger and guilt to loneliness and depression. It also can take incredible physical tolls. In fact, it's estimated that this physical and emotional impact constitutes a whopping $7.9 billion of the healthcare costs in the U.S. Therefore, it's essential that caregivers maintain their personal life and self-care whether this means time with friends, treating yourself to an indulgence, exercise, or seeking out support groups and counseling. Mary Stehle, licensed social worker and Senior Care Advisor at Care.com says, "A person with Alzheimer's who has lost the ability to understand and communicate through language is always looking for cues from us as to how to interpret the world. They are constantly reading our tone of voice, facial expressions, and body language. When we are tired, stressed, and resentful, they pick up on this and it often impacts them negatively." So it's important to remember, putting yourself first is not an act of selfishness, it cultivates better care for your loved one with Alzheimer's. For helpful suggestions and support groups near you, visit the Alzheimer's Association or National Family Caregivers Association.
» Read our Caregiver Guide to Alzheimer's
» Find a caregiver who specializes in Alzheimer's by searching our elderly care providers near you.