It is increasingly common these days to turn on the radio or television and hear a “Silver Alert”. Reportedly, six out of ten persons with Dementia will wander. Of all the Dementia behaviors, this one frightens families the most. Dementia sufferers get confused and can easily get lost when they wander outside of the home, even when they have spent many years in the same home.
If your loved person is no longer safe to be out alone, the first thing to do is “escape proof” the home. Locks, window and door monitors, security cameras and even baby monitors will help.
Wanderers usually have a purpose. That unfortunately often involves their own sense of memory, with caregivers left in the dark. Like other Alzheimer’s behaviors, look for the why and see if you can determine what makes your loved person want to leave. Does Mom think she needs to get to an appointment, pick the children up or go to work? Is she wanting to “go home”, at a time when where she is now has been her home for several decades?
If there is anything that you, the Alzheimer’s caregiver, don’t get enough of, it’s sleep. Consequently, if the one you are caring for is waking constantly, spending large amounts of time awake in bed, there are a few things you can do before resorting to medication for either of you.
- Maintain a regular schedule of awake and sleep times.
- Limit daytime naps.
- Take your loved person outdoors on a regular basis and try to add s a walk into that time.
- Eliminate alcohol and anything with caffeine, including soda.
- Make her bedroom restful and noise-free.
- Could Mom be in pain? Is she taking a medication that causes wakefulness?
Tip for Caregivers:
Ted’s wakefulness developed into a regular habit of leaving his bed and going into his wife’s room. He would then stand over, touch her and ask “Doris, are you awake?” Of course, she wasn’t. Ted would be back with the same question 5 minutes later. Frustrated, one night she jokingly said “Yes, but I am in the middle of vacuuming. Go back to bed and I’ll get you when I am done” Ted turned around and went back to his room. From that point on, every night she would be either washing dishes, sometimes ironing; or even tap dancing. This worked, and they both got relatively good sleep.
Eating , either too much or too little, can be a major problem when one has Alzheimer’s or some other dementia. If Mom is suddenly losing weight, there could be any number of reasons, including:
- Medications (these can affect the appetite and/or change taste)
- Taste and smell functions that often decline as we age
- Someone else is cooking, and it is not to their liking
- Inability to manage utensils
- Are they able to find snacks left for them?
- Dental problems may be affecting their ability to chew
- Are they getting enough exercise?
- Develop a sense of humor and some flexibility regarding meals; if Mom suddenly only wants to eat oatmeal for several meals a day, let her. Jazz it up with some fruit, crumble up bacon add a little protein drink. Try something new the next day.
- People with Alzheimer’s eat more when they are at the table with others. Take a break and eat your lunch with Mom.
- Eliminate meal time stress; keep the noise level down, shutting off the washer, dryer, and TV.
- Expect “accidents” and messiness; that’s what paper towels and napkins are for.
- Have healthier “snacks” available and visible.
- Serve food that is familiar and easy to eat.
When dealing with Alzheimer’s, one of the most common and difficult dementia behaviors is resistance to bathing. Someone who is already confused and feels total loss of control most likely will not get in a tub or shower willingly.
Investigate some of the reasons. Does the person feel unsafe? Are they able to see and comprehend the actual depth of water. Have they been shown the safeguards and grab bars? Ever been in a hospital and undressed in front of strangers? Imagine a stranger demanding you get naked and then pouring water on you for no good reason whatsoever!
There is an art to making Alzheimer’s patients feel comfortable when bathing. Involve them in the process of “getting things ready for a bath”. Picking out shampoos or wrapping a warm towel around their shoulders and then just sitting is very non-threatening and can ease the way when it is bath time. Attempt to find out their preferences—bath or shower; early in the morning or just before bed? Women, especially, may respond to “spa time” with soft music, “mood” lighting and nice bath products. Try doing a “dry run” in the tub or shower on the bath seat partially clothed with only a damp face cloth, maybe some moisturizer, but no running water.
Incontinence is one of the most difficult Alzheimer’s behaviors to deal with and most dementia patients will develop the problem by the later.
The first step in mitigating the problem starts with the physician to make sure there isn’t a physical cause for the incontinence such as a medication reaction. Urinary Tract Infections (UTI) are often silent in persons with Dementia. They may be in pain but are unable to verbalize what is happening. A sudden dramatic change in mental status is often a sign of a UTI and should be reported to the Doctor immediately.
If the person still manages the bathroom some of the time, certain things can improve the success rate:
- Remain calm and reassure them when they do have accidents.
- Provide clothing that is easy to remove (elastic instead of buttons or zippers).
- Make the bathroom easy to find and use (open doors, good lighting).
- Insure that they can they safely get to the toilet, especially at night (bed height, walking distance, or furniture impediments may create difficulties).
- Reduce fluids but only right before bed (manage your patient’s hydration carefully for persons with Alzheimer’s don’t always recognize thirst).
- Establish a consistent bathroom schedule (every two hours, or after each meal).
Eventually it may become healthier for the person with Alzheimer’s and less work for the caregiver if incontinence products are used.
Dementia Behavior: Repetition
Is anything more annoying than constant repetition of either words or some other behavior? Repeating the same actions or verbiage is usually because they just can’t remember they rearranged the bureau or told you that the mailman was coming. They are often merely trying to seek or impart some information but, due to the damaged brain cells, aren’t able to do so. Sometimes there is some important thought within them and they just get stuck.
As short term memories disappear, individuals with Alzheimer’s go back in time to memories from childhood. As toddlers, they learned the “naughty” words that were never to be used. But, when Uncle Joe coaxed them into blurting one out in mixed company, it got attention. Maybe a laugh while the parents looked on horrified or maybe punishment, but the reaction was memorable. The person with Alzheimer’s no longer recognize any significance -just that these words were important once.
Apparently, no one believes their parents ever had sex, flirted or had suggestive conversations, because when sexually-oriented behavior occurs, panic sets in. Mom did not suddenly become promiscuous and grandpa didn’t just become a dirty old man. I always ask families to investigate: “Where did your loved one think they were?” If Grandpa was making advances, “Who does he think he was propositioning?” “What were the actual the words? ”Most importantly, “Who does that person resemble?” Does the granddaughter he invited to go “spoon” look anything like his deceased wife 50 years ago?
Communication impacts every aspect of Alzheimer’s care. It is difficult responding to someone else’s reality and even professionals will sometimes slip and automatically correct someone who is confused. In fact, due to their cognitive disease, they really cannot comprehend your words.
As their Alzheimer’s progresses, there will be less coherent sentences, more fragmented thoughts, and eventually “word salad”. Decipher what you can, gently attempt to get them to expand when you think you know what they are trying to communicate, but constant requests to explain only causes added frustration. Put yourself in the position of a person with Alzheimer’s: imagine what it must be like to only speak Chinese with no one to understand you.
While hearing loss is common as we age, people with dementia are often examined by audiologists without success because their constant “What” is most likely a lack of comprehension. In the beginning of the disease process, people frequently miss one or two words out of four. As they further decline, they eventually reach a point where they understand one word out of four, which may confuse others in the conversation because the one word that is understood is usually taken out of context or used in a way that becomes accidentally humorous.
Tip for Caregivers
Short , simple sentences work best. Do not make multiple-part requests.. “Sit down and give me your foot so we can get your socks on” is way too complicated. Make each step a separate request.
Not all of our communication is verbal. Facial expressions, tone and body language may influence your loved person’s response even when you think you are doing a good job covering you frustration. This visual comprehension is often more effective.
Another point to remember is that our vision declines as part of the aging process. Persons with Alzheimer’s or with another dementia are often dealing with the lost “connection” that a normal person’s brain makes when they “see“ an object, and their brain identifies it and this increases as the disease progresses.
Someone with Alzheimer’s disease has less peripheral vision, poor depth perception and less ability to detect movement. The loss of color identification can create identification issues. Your white tile kitchen floor may suddenly frighten Mom as she walks in and sees “ice”. This inability to correctly identify objects can often lead to the assumption that the person is hallucinating.
Anger, aggression and agitation leave Alzheimer’s caregivers bewildered and frustrated, especially if this behavior is new to your loved person. The agitated behavior can be repetitive, making them appear restless. As an Alzheimer’s or dementia caregiver, you don’t always remember not to respond to verbal or physical outbursts, as this is part of the disease. Knowing how hard you try to take care of her, would Mom react this way if she were not brain-impaired?
These behaviors are frequently attempts to communicate things such as pain, hunger or fear. Good caregivers investigate, inquiring as to what might be the trigger that sets off the behavior. Is she being physical with an object such as her purse? Does she not recognize it as hers? Does she think someone stole from it? Concentrate on why this behavior is happening, not how you feel being on the receiving end. The answer to this particular symptom is to always show your compassion, with words and body language.
Tip For Caregivers
When these incidents occur:
- Comfort them; remind them that you are there with them.
- Make sure you don’t react negatively or show your frustration; it is unlikely they know the “why” of their behavior.
- Do something positive for and with your loved one: a cup of tea, or patting a dog. One of my favorites for men and women is a hand massage. A moisturizer such as almond oil has a pleasant smell (not too girly for guys) and feels really good. It calms and accommodates two senses: touch and smell.
While verbal aggression can be accommodated, physical aggression should never ever be ignored. Make sure you protect yourself and/or others who could be harmed. Remove items that could be used as weapons. Call your physician immediately and, if necessary, call 911 for help.
It is sometimes necessary to have an individual hospitalized.
As stated before, individuals who suffer from Dementia reside in their own state of reality. They fill holes in their memory with stories that are untrue but make sense to them.Because of their false beliefs (delusions), it is not unusual for them to become paranoid. They may believe that you are poisoning them, keeping them captive, or may not even be who you say you are. While a natural reaction might be to tell them how wrong they are, don’t. Don’t take offense, don’t argue, and let them tell you what they are thinking. No matter how incredulous their story may be, acknowledge what they are saying without judgment in a simple, straightforward way.
People in the later stages of dementia are often thought to be hallucinating. Hallucinations are the perception of something that doesn’t exist. Unlike paranoia, where the individual makes up stories to fit their version of reality, hallucinations can involve sight, sound or smell. They may hear voices, or see things that are not there, or they may be convinced of an odor undetected by anyone else. Vision loss as a result of Alzheimer’s disease is usually a prominent hallucinatory symptom, and not a result of delusional thinking. Limited depth perception as well as the misinterpretation of a color can be frightening. Patterns and designs can be disorienting and distorted perception can cause disorientation which might lead someone to bump into an object and insist it was a person. Medications and pain may also be a cause.
Tip for Caregivers
Great caregivers become great investigators and that ultimately makes their job easier. Discovering the cause takes time and patience, but the results can be better than an immediate fix, especially if that fix is medication.
- Do not argue or deny what they are seeing, hearing or smelling.
- Offer them comfort and help calm them.
- My favorite method: identify yourself, acknowledge their difficulty, and then distract while physically moving them to another location.
- As with all Dementia behaviors, take a few minutes and investigate. What are they really “seeing” or hearing. Do they fear the glass safety barrier because they can’t see it? Do they think they are standing on a cliff instead of the second floor balcony?
- Finally, if the hallucinations appear suddenly and are not relenting, call the physician, as this can also be a sign of a medical problem such as a urinary tract infection.
Many years ago, I convinced a geriatric psychiatrist to occasionally accompany me when I made home visits to clients we shared. Edith was a charming 90- year old with mild cognitive impairment who was being treated for depression. At the time, she was managing her disease in her Berkeley apartment with supportive services such as Meals on Wheels, and transportation and visits from church members. Her medication was adjusted after she reported a problem with sleep. She started complaining about a man outside, watching her every night. During our visit, Dr. T and I both walked in the bedroom, opened the blinds, and looked out through the canvas awning only to find the view blocked by a large tree. There was no place someone could actually look in. While we didn’t comment, she was perceptive enough to realize our disbelief and dropped down onto her bed, frustrated. I sat down next to her, and we chatted while Dr. T was in the kitchen . I turned toward the window and stopped short. I immediately had the Doctor come in and sit down and suggested he look out of one of the small uncovered windows above the blinds. Through that view one could clearly see that the fraternity porch had an “appropriated” Ronald McDonald (wearing a negligee, no less) standing on the roof above the lighted doorway. There was no doubt that after getting in bed at night, and without her glasses, she could see him.