Dementia is a term that brings to mind a pleasantly confused, grandmotherly figure—sweet, gentle and easy to redirect. Adult children believe and trust that Mom will only exhibit her most endearing qualities, be socially appropriate, and docilely follow the directions of her caregivers. But what happens when an already misfiring mind responds chaotically to the world around it, veering drastically from the peaceful path?
Dementia presents differently in different people. Existing pre-morbid conditions may adversely affect the face of dementia. Untreated mental illness, undetected substance abuse, and personality disorders all result in frenzied presentation. This presentation appears to be bizarre and disconnected from reality on its face—but is it?
There is a very common condition that is well-known in the lay and professional populations called colic. The strict medical definition of colic is a condition of a healthy baby in which it shows periods of intense, unexplained fussing/crying lasting more than 3 hours a day, more than 3 days a week for more than 3 weeks. There is much attention given to this condition and much to be learned from the coping strategies that have developed to address the needs of an inconsolable child. So let us return to a person suffering from atypical dementia and define what colic looks like in an adult.
Colicky dementia is unpredictable, inconsolable, and results in disproportionate behavioural reactions to the reality of the individual’s environment, inner health, and care giving. The individual exhibits a chronic state of anxiety, panic, and circular thinking that last for periods exceeding 3 hours a day more than 3 days a week for more than 3 weeks.
This condition ensnarls the individual in a continuous fight-or-flight response with their caregivers and the environment. This is more than a nuisance to the caregiver as it leads to serious caregiver stress, especially if they do not find ways to cope with the colicky behaviour.
The root cause of colicky dementia is discontent with the environment. The individual reacts with fear and panic when they feel unsafe or uneasy. They simply do not feel in control. Since they cannot communicate normally with their surroundings and those who care for them, they continue to misread the data input from their surroundings and those who care for them and react with escalating and circular panic. The fight-or-flight response has never had a clearer presentation than with colicky dementia. They resort to undesirable behaviours such as shouting, biting, crying and hitting in an ineffectual attempt to reduce the tension in their own mind.
We say we do not know what to do with this outburst-prone behaviour and yet we do. An older person who does not understand their environment is similar to an infant who has not yet learned to interpret or control theirs. Their dependence on their caregivers is universal. So why not learn from the strategies that have developed over time to help the caregiver cope and provide comfort for the colic that afflicts both worlds?
Coping with Colicky Dementia
The first thing to do is a complete and thorough assessment of the person to rule out medical conditions that are causing discomfort. One of the most common causes of dementia-related agitation is a urinary tract infection. They have difficulty communicating the symptoms of frequency, burning and pain. Instead, they become agitated, irritable and confused. Other conditions such as acid indigestion, sore feet, arthritis, and even hemorrhoids can be easily missed by the caregiver when the communication of symptoms is so foggy.
One also must do a psychological assessment to rule out contributing mental health conditions such as depression, bi-polar symptoms, and substance withdrawal. A person with dementia is also a person with a possible mental health history that cannot be ignored. Untreated mental illness can be the major contributing factor that results in colicky dementia. Imagine the person with an anxiety disorder such as obsessive compulsive disorder who is plagued with a short-term memory deficit that prevents them from completing their self-soothing rituals.
Family dynamics are also important when one sees the picture of colicky dementia. Even if the person with dementia does not understand all of the nuances of the situation, the emotional response to discord can be very clear. When there is a feeling of disharmony, the person can react with a need to try to control the situation with emotional outbursts of their own. Care providers must help to calm the environment and have the person feel as safe as possible.
What is it all about?
Changes in mood – Do the mood changes seem to coincide with environmental changes, the time of day, or in relation to food or sleeping patterns? For example, if your loved one is cranky in the late morning, watch to see if she or he is sending signals that you are missing—like an isolated yawn or eye rubbing, rocking, etc.
Reactions to different situations and environments – People often send signals that we just don’t notice. He/she might get over stimulated if too many people are around or become especially upset about schedule changes.
Differences in the quality and nature of the outbursts – At first all will sound the same; but, gradually, you will hear how the “I’m hungry” is very different from the “I’m tired.” Notice noise level, pitch and intensity of the voice as well as body language and facial expressions.
Learning what it takes to soothe and comfort an upset or unresponsive adult may take all of your skills of perception and awareness. Don’t give up if you are having a hard time figuring out what makes your loved one panic—he or she will probably keep trying to let you know.
Soothing and comfort measures are keys to help one cope with their environment
Assure that basic comfort measures are met
A clean/dry environment
Food and water
Employ soothing techniques
Rotating pleasant faces on picture viewer
Control over stimulation
Provide methods for self soothing
Textured cloth – blankets
Repetitive tasks – i.e., folding towels
Social engagement strategies
Reading to them
PET – pleasant experience therapy
Sometimes the problem cannot be fixed in the moment, but you can:
Keep them safe
Frequently check on them
Decrease the stimulation
Keep trying to soothingly reach out when receptive
Let them work it out in a controlled, safe, supportive environment
The family caregiver should:
Recognize your limits. Pay attention to internal warning signs when you are feeling overwhelmed. The sooner you spot your personal limits, the easier it is to plan ahead—for extra help, a break, an excursion outside or a quick pep talk from a friend or loved one.
Reach out for support. If you can, enlist help during the worst times of the day. Say yes when people offer to help with housework, meals or respite. Find a caregiver support group to talk to and get out of the house when you can.
You don’t have to be perfect. It would be impossible to be fully present and attentive to a person, especially a colicky person, 24 hours a day. Experts estimate that meeting the person’s needs at least one third of the time is enough to support healthy bonding and secure attachment. Don’t worry about getting it exactly right all of the time. Instead, try to relax and enjoy the times when your loved one is at peace.
Am I the reason they are upset?
Are you distracted, overwhelmed, and at a breaking point? If you’re stressed out and exhausted, you’re going to have trouble relating in a soothing, nurturing way. So it’s important to get the support you need. Extra support is essential if you are:
Suffering from a major illness or chronic health problems
Overwhelmed or fearful about care giving
Exhausted from lack of sleep
Feeling neglected, isolated, or unsupported
Colicky dementia does happen and it must be addressed head on. It is clear that recognizing the root causes and treating the client in a holistic manner can help. One must first assess the client for medical and psychological conditions as well as dysfunctional family dynamics. Utilizing some of the learned interventions from dealing with the colicky infant can help open simple, practical strategies for this population. Providing relief and support for the caregiver with 24/7 responsibility is imperative, regardless of the age of the dependent person. Watching for nonverbal signs of distress must be employed universally. There is an undeniable benefit in administering soothing techniques for all states of anxiety regardless of its origins.
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Shay Jacobson is the founder and president of Lifecare Innovations and the related companies, Lifecare Home Solutions and Lifecare Guardianship. She is a National Master Guardian and has recently been appointed to the National Board to serve a three-year term. Visit her Web site www.lcius.com