By Sharon Roth Maguire MS, APRN-BC, GNP, APNP

While being a caregiver to unusual or so-called “difficult” behaviors, it is quite common for persons with dementia to display these types of behaviors and while many of these behaviors are predictable, like repetitive questioning, pacing, forgetting how to use common objects, etc., there are others that are more upsetting to both the caregiver and the individual with dementia. Agitation in the form of shouting, pushing, resisting care; spitting out food; urinating in inappropriate places, disrobing; wandering, etc., are the kinds of behaviors that are truly unsettling and should prompt investigation. Special note should be made of the fact that medication in the form of sedatives, tranquilizers, and other “behavior” medications like antipsychotics need not be the first step. Many of the medications given to help control these behaviors can cause more harm than good. It is true that in certain instances these types of medications are warranted, but far too often these medications are prescribed as a knee-jerk response when no or few other strategies have been attempted to reduce the problem or are continued for far too long without attempts to reduce the dosage or discontinue the drug.

Current thought on best practices with regard to understanding difficult behaviors in persons with dementia focuses on the concept of unmet need. As human beings, we all have certain, basic physical and emotional needs: air, food, water, sleep, comfort, love, safety, security, belonging, etc. Individuals with dementia continue to have these needs despite their disease; their disease, however, may make it more difficult for them to express or satisfy these needs. For example, if I no longer am capable of explaining an abstract concept like insecurity due to the cognitive impairment I have related to Alzheimer’s disease, yet I feel that way, how can I express it? If I have physical discomfort due to arthritis pain in my hips and lower back but cannot articulate the words to describe it due to the language impairment I have related to Alzheimer’s disease, how can I tell you that I am in pain when you try to get me out of my chair? I may “show” you by resisting, or withdrawing, shouting, striking out or any number of other ways that seem like difficult behavior. When in fact, I am trying to “tell” you that I have an unmet need: I am in pain; I need comfort.

As caregivers, you know your loved one well. You may be surprised when he or she does something out of character or behaves unusually. You may be tempted to respond abruptly or seek strong medication to curb the problem. Better strategies would include an analysis of the potential causes of the behavior focusing on unmet need. Some common themes related to physical need: Is your loved one in pain? Many older adults have chronic pain that research tells us is inadequately or even un-treated. The addition of a regularly scheduled mild analgesic may be of tremendous benefit. Could your loved one have an infection? The most common infections that we see in older adults with dementia are urinary tract infection, pneumonia, and skin infections from scratches or open wounds. This can be very uncomfortable for the individual and definitely contribute to exaggerated behaviors. You would need to see a physician for treatment of these. Could your loved one be dehydrated? As we get older, we have a diminished thirst response and coupled with common medications that older adults take, like diuretics (“water pills”) that further dehydrate them, you could see increased confusion. Is your loved one uncomfortable due to constipation? Again related to poor fluid intake and certain medications (add calcium supplements to the list), lack of exercise, and limited dietary fiber, older adults are at risk for constipation which can be very uncomfortable. Simple strategies like providing regular liquids throughout the day, adding fiber to the diet and a daily walk can help.

Some common themes related to emotional need: Is your loved one bored? Are they wandering or trying to leave your home to find something more interesting to do? Conversely, is the day too busy or too overwhelming and they are looking for more quiet time? The best days for persons with dementia are when they have balance between sensory stimulating and sensory calming activities. Is your loved one frightened of being left at home alone? Are they feeling sad or depressed? The research tells us that the rate of un or under-treated depression is quite high in older adults with dementia. Providing social times and opportunities for continued belonging are important; consider a pet, plant or an indoor garden to offer care responsibilities and purpose to the individual with dementia.

It may take some time before you are able to identify the potential causes of the challenging behavior, but understanding that it may be the result of an unmet need is an important first step. Unfortunately, there are behaviors that we may never be able to understand as they are part of the mystery of this challenging illness. Finally, it is very important to have a care team that accepts this approach to behaviors as well. Understanding challenging behaviors is key to meeting your needs as a caregiver!

If you need assistance in caring for a loved one with dementia or would like to consult with someone for more information or for suggestions feel free to reach out to Live Free Home Health Care in New Hampton, NH. Live Free Home Health Care provides medical in home elder care in Central New Hampshire. We have registered nurses and licensed nursing aides who are experienced in providing care to people with dementia. Contact us online or call us at 603-217-0149 to learn more about our home care agency.