- Dementia patients experience changes in their behavior that affect caregivers; the most common behaviors are repetitive talking and actions, aggression, sleeplessness and wandering
- There are guidelines that may help caregivers better communicate with a dementia patient such as avoid criticism or arguments, be clear and concise, etc.
- Depression may bolster the risk of someone acquiring dementia
- The “Holistic Care Model” is a practical approach that focuses on mental and physical needs of the patient, and also takes into account the caregivers
As sapping and ungrateful as dementia often is towards caregivers, dementia nevertheless has a way of evoking new and heroic dimensions in serenity, endurance, and one-sided compassion.
This article thus pays special homage to caregivers of every kind, whether family, hired, professional or just good-hearted neighbors who occasionally drop in on the folks next door to give a few moments of respite to the caregiver of a person with dementia.
The vast majority of dementia patients experience changes in their behavior during the progression of their disease. Here are some of the common behaviors that affect caregivers the most:
Repetitive talking and actions: Repetition is common in persons with Alzheimer’s disease and other types of dementia, and if caregivers don’t take it in stride or with a sense of humor, it can drive them over the edge.
Types of repetitive activities include a barrage of the same question, or calling out to someone. For example, “Where is Johnny? Where is Johnny?” or, simply. “Johnny! Johnny!” And yet more repetitive actions can include rubbing a particular spot on the table, emptying drawers, or trying to leave the “safe zone”. There can also be physical factors that trigger the repetitions: hunger, thirst, or the desire to go outdoors may prompt a person with Alzheimer’s to bang on the door or fiddle with the lock.
Alternatively, the patient with Alzheimer’s or other dementia disease can follow you around for hours on end, or repeat endlessly a phrase like “I want to go home, I want to go home.” In Memory Care wards across the nation, these behaviors are part and parcel of every day living.
Memory loss accounts for many of such activities; the patient with Alzheimer’s forgets that they just used the same phrase or emptied the drawer. Being over-anxious and restless is another factor: they may fret about Johnny being lost or in trouble. Besides, many repetitive activities are simply pacifying or soothing to the agitated person with Alzheimer’s or most other types of dementia. The calming effect of an activity may thus prompt the individual to keep repeating it.
To alleviate situations like that, caregivers need to remain calm and perhaps redirect the patient by setting up a new activity or game, or by answering a few of the questions in different ways. It also helps if the caregiver can identify what underlies the activity, particularly when it is something that can be remedied, like thirst, hunger, the need to go to the bathroom, pain, or some other similar condition.
Aggressive behavior: Margaret had finally gotten accustomed to her father not knowing who she is. But when Dad one day suddenly gripped her by the arms and growled at her menacingly, the experience left her terrified. And when, following that first event, her dad embarked on habitually cursing, growling, grabbing, lashing out and hitting, it was time to rethink her decision to keep Dad at home “for the duration”. Home obviously wasn’t doing him any good, and her mind turned to the memory care ward of the assisted living facility near her.
Aggressive behaviors, like repetition, are thought to be linked to forgetfulness, and to the frustration of having memories of people and events slip away. The side effects of prescription drugs are also considered a prime risk factor.
Sadly, of the near five million people who currently suffer from Alzheimer’s, admittedly the most prevalent of the various types of dementia, more than half will exhibit aggressive behaviors at some point in their disease’s progression. And Alzheimer’s disease is projected to impact more than 16 million people by 2050.
Once again, it behooves caregivers to first cancel out physical triggers such as pain, hunger, being cold, or feeling unclean following a bout of incontinence. And like with responses to other behavioral changes (subsequently discussed), caregivers of patients with Alzheimer’s disease do best by remaining calm, not being argumentative, and letting their body language and pitch of voice do the calming talk.
Sleeplessness: Sleep issues are known to be caused by the impact of Alzheimer’s on the damage in the brain’s biology. And while studies continue to find other possible risk factors, more than that is not known about restlessness at night. The best that caregivers can do in that context is to avoid stimulants, add exercise to the daily regimen, bring about an environment that is conducive to sleep, and manage naps and sleep time routines as effectively as possible.
Wandering: the majority (6 in 10) of dementia-driven individuals will at some point wander, making wandering the second most prevalent symptom after memory loss. Sleeplessness, and physical urges like thirst, hunger or the need to go to the bathroom, may cause a dementia patient to simply pick up and go. Another much studied behavior is known as the “I want to go home” syndrome, reflecting on individuals with Alzheimer’s disease simply wanting to go back to a real or imagined childhood home.
Alzheimer’s and related dementia diseases have a progressive and degenerative impact on the brain that produces changes in the patient’s personality and behaviors. In particular, changes in the ability to adequately communicate bring additional and often frustrating difficulties to the process of caring for a loved one with dementia.
Here therefore are a few guidelines that may help caregivers better communicate with a patient with Alzheimer’s disease and thereby bolster their ability to handle other adverse behavioral changes.
- Be supportive in more ways than one: When your dementia patient is trying to tell you something, assume a reassuring, unhurried stance. Show that you care, that you are fully there for them, and encourage your patient to talk or otherwise express their feelings. And whatever the circumstances, let the patient know that it’s okay, and that you are not annoyed.
- Facts don’t help, but feelings do: For the most part, mid-to-late stage Alzheimer’s patients can’t articulate their thoughts or follow your logic. They do however react positively to sensory connections, expressed by way of a gentle voice, a soothing touch, a gentle massage, calming music, and other comforting actions.
- Body language: Again, words don’t matter as much as voice, attitudes and body language. Look the Alzheimer’s patient gently in the eye, speak directly and softly, using a friendly tone and demeanor, and use trial and error to discern those little things that enable you to successfully convey pleasant feelings. Let your own aura of calm and tranquility transfer to the patient.
- Mirroring: Often involuntarily, Alzheimer’s patients tend to mirror the caregiver’s feelings at any given time, or what you’re trying to do. In some cases, they will follow you around and imitate your every action. You and the Alzheimer’s patient can benefit from that, just by showing, rather than telling, what you want them to do.
- Avoid criticism or arguments: It never pays to argue with a person with dementia, or correcting their behavior. Instead, try to read the signs and discern what feelings they are trying to express. When the patient shows signs of anxiety, it pays to just remain calm and use other soothing techniques.
- Be clear and concise: Don’t use complex language or abstractions, and don’t give multi-step instructions, or ask fluid questions that offer options. Instead, keep it simple, one step at a time, and use pointers or cues as to what you want the patient with dementia to do. For example, if you want the patient to arrange cards in a certain way, arrange the first few cards yourself as pointers.
- When the patient gets upset: When your Alzheimer’s patient gets agitated, try changing the scene or the dynamics of what you are doing. Try something like “let’s go get some cookies”, or put some quiet music, or turn the TV on. This is known as “redirecting”, and it is effective when a subtle change in the mood is warranted.
- Go easy on yourself: Forgive yourself every time you deem that you took the wrong path in a given situation, perhaps producing more anger and frustration in your dementia patient. Wrong judgments are part and parcel of caring for a dementia patient, and you should simply move on and not feel guilty about judgments made in good faith.
It is easy enough to spot the symptom of depression among persons with Alzheimer’s. But wait a minute, is depression a sign of dementia, or does it actually cause the degenerative malfunction in the brain?
Ashley Morgan, PhD and neuropsychologist at the Morris Psychological Group in Parsippany, New Jersey, says emphatically that it is the burgeoning dementia that actually causes the depression.
Other researchers have a different viewpoint: depression, they say, releases cortisol, a “fight or flight” neurotransmitter and a stress-relieving hormone that, when allowed to linger in our system, damages brain cells and causes Alzheimer’s or some other type of dementia.
Not so fast, says Paul Schulz MD, an associate professor of neurology at the University of Texas Medical School in Houston, who advances the theory that because depression may alter brain volumes, it bolsters the risk of someone acquiring dementia.
After many years helping families with the home care and other living options for their parent with dementia, here is my own take on why it is dementia, and forgetfulness in particular, that causes depression, and not the other way around:
“Grandma used to be a vivacious, witty, and very eloquent person,” recounted the grandson of one of the care recipients we took care of at my home care agency, “So, when memory issues began to set in, she commonly became unable to find the right words fast enough to match her thoughts. And when she was no longer able to talk intelligently with her friends, a chronic frustration set in that caused her to isolate herself and dive into a nasty depression.”
He paused a little at that point and then added. “Now that’s not something I could take to the bank, but I bet that a vast number of people get thrust into depression when early-stage Alzheimer’s disease prevents them from being able to speak coherently, conjuring up embarrassment, shame, withdrawal and yes, depression.”
It was Hippocrates, the great Greek philosopher and “Father of Modern Medicine” who, some four centuries B.C., proclaimed that “The natural healing force within each one of us is the greatest force in getting well and having good health. As such, Hippocrates was the first great medical mind to espouse the holistic care model.
Current physicians who specialize in treating dementia are the first to acknowledge that each patient brings a unique set of givens, and that there is no silver bullet, no magic wand, that works for all dementia patients.
In the same way as the Hospice revolution changed the way we treat terminally-ill individuals, the philosophy of “looking at the whole person” emerged and is gaining popularity by the day. It is frequently referred to as “the holistic care model”, a practical approach for mental and physical health that focuses on what is still working well with the dementia patient, and takes into account the health, cultural, spiritual and other needs of all those associated with the patient, and particularly the caregivers of persons with Alzheimer’s.
Patient-focused dementia care: The holistic approach, a form of patient-centered dementia care, enhances the dementia patient’s individuality by aiming to boost uplifting sentiments, nurture what each dementia patient can still do, and further their independence.
In practice, the physician healer incorporates into the care plan the dementia patient’s physical as well as psycho-social and spiritual well-being.
The holistic approach to dementia care advances the thesis that people with dementia still have an innate yearning to connect with ordinary folks, and their caregivers can build on that by using the patients’ life experiences to bolster that connection. They can reintroduce their dementia patients to their own personas and help them recover a feeling of control. In this form of constructive focus, patients with Alzheimer’s can appreciate meaningful activities instead of packaged programs.
To cite an example, if a person used to enjoy gardening in a previous and healthy life, the caregiver can simply make available a few garden tools together with plant pots, soil and seedlings to give their charges a reinvigorated feeling of drive and achievement.
A key component of the holistic approach to dementia care builds on the ability to continue with past social activities and lifelong joys. For instance, if in the past, a person used to walk barefoot around the house and in the yard, then they should be permitted to tread barefoot on a sunny day in the back yard.
As a result, little things like that endorse patients’ will to rise to the occasion, and that in turn boosts their self-esteem and alleviates the stress and anxiety that is often an integral part of their dementia.
I see you from my little perch as you try to keep Mom clean and well nourished, her nails manicured, her hair brushed, her demeanor calm and steady. I see you as you try to keep your own family going, preparing meals for everybody, tending to this one and that other one, assuming the incredible responsibility -the hefty burden- on everyone’s behalf.
There is a whole universe of things I want to say to you. I can try to condense them all with a little “thank you”, but that seems meaningless compared to the aloneness of what you do, to your endless feeling that life has passed you by, and that you are irretrievably in that vortex that we call caregiving.
From my little perch in elder care, I see the dozens of caregivers in the memory care wards, going in near-frenzied motion from one hall to the other, from one room to the next, trying to dispense comfort here and there, trying to make life for others a little less painful, a little more dignified.
I know you well. I worked with you for an eternity. I know that there are many times when you feel the lives you lead are beyond normal, and that this predicament of yours will never end. I can hear your silent screams on those moments when you lose control, when all you want is to go home and bury yourselves in sleep.
I know how you take refuge in your lists of what needs to be done every day, and how you never cry. Yes, there are times when you burst into tears when a friend asks you how you’re holding up, but you never cry, not during your hard and often abusive shifts at work.
I know how you sometimes look at yourself in the mirror and wonder how on earth you let yourself go like that, and what on earth you did that precluded you from all the normal joys of ordinary life.
I know you well, and I see you everywhere. You keep humanity going. What would we do with our seniors with dementia without you? What would become of them, those millions of people who also didn’t do anything to deserve their sort.
I want to say thank you. I want to salute you, despite the fact that I recognize that in the face of your daily grind, what I say will sound jarred and empty.
Still, on behalf of the millions that you care for, their families and friends, on behalf of all of us, I pay tribute to you, our caregivers, whether family, hired, professional, or simply neighbors who look in on you with the sole desire to give you a few moments of respite.