Managing Dementia Behaviors Is Easier Than You Think
Medical students are often taught, “When you hear hoofs, think horses, not zebras”. Zebra is a metaphor for symptoms, a condition, illness or disease that may be obscure, rare, scary or difficult to manage. The way to identify the sound of the hoof beats is to rule out the zebra. Maybe managing a dementia patient’s behavior is as easy as riding a horse as oppose to a riding a wild zebra.
I think a lot of people just attribute the unexplained behavior to the disease itself and think nothing can be done whether it is Alzheimer’s disease or another form of dementia unless we medicate them. When a person in our care exhibits behavior that is less than desirable, we need to learn how to rule out other illness or environmental factors before we react. A behavior is a reaction. There may be reasons for undesirable behavior that are in our control.
A person with dementia still has feelings, perceptions and reactions. Because dementia causes problems with communication, although they have a particular pain in a specific place, they may not be able to tell you what the problem is or where the problem is coming from.
Here are just a few reactions or behaviors a person may exhibit when communicating their needs becomes a problem:
- Repetition of an action, phrase or word
- Shadowing (following you like they are attached to your hip)
- Calling out (but what they are yelling makes no sense)
- Going to the closet and putting on 5 shirts
- Anxiety and agitation
- Difficulty/ resistance/combativeness when trying to get them into the shower or tub, get them dressed, get them on the toilet
- Exit seeking
All of these reactions may be exhibited because there is an unmet need, a change in routine or environment or an untreated condition that may be from a totally different illness.
Rule out the following potential problems:
- Pain- Their dentures don't fit well because of a change in weight, causing mouth sores; headache (a very common problem), belly ache, ear ache, sore throat, arthritis, gout, nerve pain from diabetes, toothache.
Pain may cause agitation, crying, combativeness, resistance. Do a thorough assessment looking for sores, swelling, discoloration in the mouth, skin. Have they been around someone else that has been sick? Observe them while they walk or move in some way, watch their face for cues. Do they have other health conditions that cause pain and if so, are they being adequately treated for that pain? Have they taken their medication?
- Need to use the bathroom/need to be changed
Even though someone seems incontinent, it may be because they can’t get to the bathroom because of an urgency issue, UTI, can’t find the bathroom. Maybe they are incontinent and are feeling uncomfortable. This may cause agitation, wandering, exit-seeking, disrobing, crying or calling out.
- They are over-stimulated
Taking a person with dementia out of their normal routine and environment, too many visitors, a trip to the mall may be too much for them. More is not always better with dementia (unless we are talking about hugs or compliments). What may have once been an enjoyable or regular part of their day is now frustrating. This may result in agitation, anxiety, exit-seeking, crying, calling out.
- They are bored
Make sure to include some stimulating activity in their routine each day. Have a day and time that visitors may come to see them. Boredom may cause crying, calling out, repetition, agitation, wandering, exit seeking, shadowing.
- They are hungry
Maybe they didn’t have enough to eat because they are having a hard time chewing because they dentures don’t fit like they used to fit, maybe they lost their dentures, maybe they slipped the dog their sandwich when you weren’t looking, maybe they are having a hard time swallowing so rather than swallowing their food, they have pocketed their food in the sides of their mouth and spit it out. Maybe they didn’t like what you made for lunch?
If they seem hungry all the time or seem to be having a hard time chewing and swallowing, have a dentist check the fit of their dentures, keep pets in another room while they are eating, if they seem to be having a hard time swallowing, pocketing their food, drooling or if you hear little coughs while they are eating; let their doctor know immediately so that they may evaluate whether they are swallowing properly. It is common with various forms of dementia to lose the ability to swallow properly. As we age, our ability to taste changes. If someone seems to have a poor appetite, try sweetening their food or let them have their dessert first. The sweetness will actually stimulate their appetite.
Hunger may cause agitation, crying or calling out, wandering
- They have indigestion/ate too much
As dementia progresses, it is common to lose the sense of being full. Watch them while they are eating, keep foods secured (locks on cabinet doors and refrigerator) and serve meals and snacks at regular intervals every day.
Over-eating or indigestion may cause pain, it may cause problems with their blood sugar.
It may cause agitation, crying, calling out.
- They don't like what they are wearing
Dress them as they would have dressed themselves. Minor changes may need to be made so that it is easier for them to dress themselves or make it harder to undress themselves. Give them a choice each day of “this red outfit or this blue outfit”. Keep only a few outfits where they may access them.
Having an opinion about your choice of outfits may cause disrobing, putting 5 shirts on at once and agitation.
- Their clothes are too tight or itchy
A person with dementia may gain weight or girth for many reasons – inactivity, they are eating between meals, they are making poor food choices, their metabolism is slowing down, they are constipated, they have another health issue at play.
Wearing clothes that is too tight may cause them to disrobe and become agitated. If there is an unusual gain in weight that can’t be explained, make a doctor appointment to rule out serious health concerns.
- Their shoes are too tight – their toe nails are too long, there is edema/swelling
If someone is living in a facility, the first thing I would find out is, “Are they wearing their own shoes?” Are they seeing a podiatrist regularly to have their toe nails trimmed? Do they have another health condition like congestive heart failure which may cause swelling of their feet? Have they stopped or started a new medication?
Improper fit of shoes or pain in the feet may cause pain, agitation, anxiety, combativeness, resistance to care.
- They are cold or hot
An elderly person is more sensitive to changes in temperature. Their skin is thinner, there is less muscle to keep them warm. Being cold or hot may cause crying, calling out, combativeness, disrobing, wearing 5 shirts at once, exit-seeking
- Medication interaction or missed medications
Have they started a new medication? Are you sure they are swallowing their medication? Make sure that with each doctor visit, you give the doctor a complete list of all medications, over-the-counter medications or supplements. Just because something is “over-the-counter” or “natural” doesn’t mean it can’t interact with medications they are already taking. ALL medications, vitamins, supplements are chemicals or cause a chemical change in the person’s body. A medication interaction may cause unpleasant symptoms and could also interfere with the benefit of another medication.
Missed medications or a medication interaction may cause pain, side effects, change in mood, change in weight, change in ability to carry out activities of daily living, their ability to ambulate, change is alertness or cognitive function.
This may cause crying, calling out, combativeness, resistance to care, agitation, anxiety, depression, hallucinations, delusions, disrobing, wandering, delirium, shadowing
- Low blood sugar or high blood sugar
The goal should always be to maintain a stable blood sugar. A rise or dip in blood sugar can cause wide behavioral changes from anxiety and agitation to lethargy, sadness, crying, and combativeness.
- Urinary Tract Infection, Fever/ Infection
A urinary tract infection becomes a more common problem for someone as they age and/or becomes incontinent. Keeping a person hydrated and making sure that they are toileted regularly is often easier said than done. Keeping them on a routine and schedule of meals and hydration, regular trips to the bathroom, keeping the area clean and dry, changing them will help to cut down on frequency of a UTI.
A UTI and/or fever may cause delirium, delusions, hallucinations, agitation, anxiety, wandering, exit-seeking, combativeness, loss of appetite.
Certain medications, diarrhea, high sodium and/or not getting enough to drink or eat are a few reasons for dehydration.
Learn the side effects of the medications and prescribed treatments they are taking. Remember that although someone may dislike drinking a cup of water, there are other ways to hydrate like eating fruit, ice cream, jello, soup.
Dehydration may cause a person to become lethargic, delirious, cause agitation, mood swings.
Sundowning is a term used to describe a change in behavior and/or cognition that happens during a particular time of day for a dementia patient. If you notice a pattern for the change in their behavior at a particular time of the day, try to adjust activity for that general time. If a person is sundowning, the key is to keep them calm or engaged in a pleasant, peaceful, soothing activity at that time of the day. Slow your activity down at that particular time of day as well and take a few minutes to get them seated, give them a hand massage with some lavender lotion, make sure they are hydrated, they have used the bathroom, turn off the tv, put on some soothing music, give them a snack. Think about what they would have been doing that time of day in their earlier life. A housewife might have been getting dinner ready – let her set the table or peel potatoes. A man might have had a routine when he came home from work like putting on his slippers, having a drink and reading the paper.
Start at the top of the list of potential problems and work your way to the bottom - from their head to their toes. There are some easy solutions to some of the potential problems.
Consider this: as a person ages, their weight changes, muscle deteriorates, skin thins, there is atrophy throughout the body – from their brain to their toes. An eighty-five year old person isn’t as able to handle stressors to the body and brain like they did when they were twenty-five. If a person doesn’t have dementia, they can figure out why they are hot without needing to take all their clothes off. A person with advanced dementia may not have the ability to determine the cause of their discomfort or communicate that they are hot so we need to be looking for non-verbal cues. Some of their behaviors may need something more than a change to their routine or environment to make them pain-free or less anxious. That is when it’s time to let the doctor in on what is going on. Never assume that a repeated, troublesome behavior or change in their condition is just part of the disease. Keep a journal of all changes in behavior and share them with the doctor.
Medical or behavioral zebras, like a real zebra, may be hard to manage or control. Don’t assume that it is a zebra that can’t be managed or jump on Google – where all symptoms point to wild zebras to look for a diagnosis or solution. Simple changes in routine, or developing a routine may be all you need to reign in the horse. When all simple changes or solutions fail, let the doctor figure out whether it is a zebra or horse.