I have been taking care of my mom, who is diagnosed with advanced/severe Alzheimer’s, around the clock for the past two years. Right now my biggest struggle is how to deal with her saying, “please help me,” every 15-20 seconds for hours on end every morning. I’m just about at the end of my rope with this one, and in all appearances there is nothing she really needs. Can you please help with this?
–C.A.
Repetitive vocalizations and other repetitive behaviors can be caused by feelings of insecurity, fear, frustration, stress, anxiety, or depression.
Sometimes repetitive behaviors are in response to an unmet need or want. It is important for caregivers to check for any needs or wants, such as toileting, hunger, thirst, pain, a desired object, or meaningful activity. Figuring out what the person needs or wants requires careful observation of the person’s vocalizations, expressions, body language and environment.
Physical illness can be a cause of behavior changes and difficult behaviors. You should have a physician evaluate your mother to see if there is a medical issue contributing to her behavior. Pain is a common cause of repetitive requests for help. People with dementia often have difficulty telling others that they are in pain. If your mother has pain issues, a physician should determine the cause and treat the symptoms as well as the underlying cause if possible.
Another possibility is that her current medications might be contributing to her behavior. Perhaps the medications you give her in the mornings are causing stomach pain or upset. If that is the case, she may benefit from changing her medication regimen, giving her medications with food, or adding an anti-reflux medication. Some medications can actually cause repetitive behaviors as an adverse side effect. Discuss these possibilities with her physician, and work with a physician if adding or changing current medications.
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Combining behavioral interventions with drug therapy is often an effective approach for
managing behaviors. If you are concerned that your mother might be feeling anxious or depressed, you should consult a physician to have her evaluated, because there are effective medications for treating anxiety and depression. Anti-anxiety and anti-depressant medications have been shown to reduce repetitive behaviors. So discuss this possibility with her physician.
Another approach to preventing repetitive behavior is to look for a specific trigger or antecedent for the behavior, and then to modify that antecedent. In your case, your mother begins her repetitive behavior every morning. Perhaps something in her morning routine is triggering this behavior. Look for possible ways to break this pattern of behavior. One strategy is to change her morning routine. Try positioning her in a new place in the morning and doing things in a new order or new manner. Once you find a routine that does not trigger her repetitive behavior, adopt it as your new routine.
Keep in mind that people with dementia like routines and consistency. So if you do not already have a morning routine, then perhaps settling into a consistent morning routine will be reassuring to your mother. Keep a journal of daily activities and behaviors to help you figure out which strategies and routines were effective.
Perhaps her repetition is triggered by being left alone or separated from you in the morning while you prepare breakfast or do housework. Try having everything prepared the night before so that you can sit with her more during the mornings. Have her close to you as much as possible so that she knows she is not alone.
Respond to her emotions as well as her words. Acknowledge her feelings, and try not to show annoyance or remind her that she is repeating the same phrase. Offer plenty of reassurance and comfort. Use a calming tone of voice and comforting touch to tell her that you are there for her, love her, and will do your best to help her. Try using gentle touch, such as stroking her arms and forehead, to help soothe her. Studies have shown that rubbing relaxing fragrances, such as lemon balm oil and lavender oil, while massaging the arms and face can decrease anxiety and agitation in people with severe dementia. So select a relaxing fragrance of massage oil and try aromatherapy massage.
Another effective strategy is to distract her with a pleasant activity that she enjoys. Listening to favorite music is an effective way to calm repetitive and agitated behaviors. So try playing her favorite music before or shortly after her behavior begins. Other distractions include exercise, playing a game, offering a snack or beverage, going through old photos, and any activity that interests her. Activities that require repetitive behaviors, such as folding napkins, are often good distractions. Perhaps a familiar visitor in the morning will prevent her repetitive behavior. A visitor would provide a pleasant distraction and a chance to reminisce about happy memories.
Lastly, it sounds like you need to take care of yourself and your own level of stress. Your frustration is very understandable. Remember to take some time every day to relax and do some activities that you enjoy. It would help to engage in some type of relaxation exercise, such as deep breathing or meditation. Remind yourself that you are doing a great job with the very important and challenging role of caregiver.
Because of the high level of stress associated with providing care, every caregiver needs a break now and then. If you don’t have some form of respite care, you should consider asking family and friends for help, or look into professional respite care services, support groups, and volunteer organizations.
Here are some resources for you to consider:
• The National Aging Information Center offers the Eldercare Locator, which helps to find community assistance for seniors. Website: http://www.aoa.gov/naic/elderloc.html. Tel: 800.677.1116.
• The National Council on Aging (NCOA), National Adult Day Services Association (NADSA) offers a set of guidelines for adult day service programs. Website: www.ncoa.org. Tel: 202.479.6682. E-mail nadsa@ncoa.org
• ARCH National Respite Network provides a free search service to help caregivers find respite care in their local community. Website: http://chtop.org/ARCH.html
• The National Family Caregivers Association educates, supports, empowers and speaks up for family caregivers: Website: http://www.nfcacares.org. Tel: 800.896.3650
• Lotsa Helping Hands provides an interactive calendar and other functions that will enable you to organize your friends, relatives and neighbors into an effective support group: Website: http://archrespite.lotsahelpinghands.com/eldercare/home. Tel: 919.490.5577
• Meals on Wheels delivers meal services to people in need. Website: http://www.mowaa.org/Page.aspx?pid=183. Tel 703.548.5558.
• Alzheimer’s Association offers caregiver support as well as information about caregiving and resources. Website: http://www.alz.org/index.asp. Tel: 800.272.3900.
• Administration on Aging (AOA) provides a variety of programs and services related to aging. Website: http://www.aoa.gov. Tel: 202.619.0724.
• Senior Companions is composed of volunteers who provide companionship and assistance with caregiving. Website: http://www.seniorcorps.gov/about/programs/sc.asp. Tel: 202.606.5000
• LightBridge’s tips for managing caregiver stress. Website: www.LightBridgeHealthcare.com/tips/tips_caregiver_stress.aspx
Dr. Mindy Kim-Miller is a trained medical physician who provides useful, but general answers to questions provided by online visitors. While Dr. Mindy can not provide specific medical advice or services, we hope you find her responses useful in your personal education. All information is provided for informational and educational purposes only and is not meant to be a substitute for professional medical advice, diagnosis or treatment. If you suspect you have an illness or disease, or a health related condition of any kind, seek professional medical care with an appropriate health care professional immediately. Do not postpone or delay seeking treatment or disregard professional advice based upon the general answers provided by Dr. Mindy. Dr. Mindy’s advice is not intended to substitute for a visit to your personal physician or other qualified health provider. Any specific medical concerns or questions you may have should be directed to your personal physician or other qualified health provider.
