- Individuals with dementia can 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 person with dementia, such as avoiding criticism or arguments, being clear and concise, etc.
- Depression may bolster the risk of someone acquiring dementia, but dementia may also lead to depression.
- The “Holistic Care Model” is a practical approach to caregiving that focuses on mental and physical needs of the person, and also takes into account the caregivers.
As devastating as dementia often is for individuals and their caregivers, dementia nevertheless has a way of evoking new and heroic dimensions in serenity, endurance, and what can sometimes feel like 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 person next door to give a few moments of respite to the caregiver of a person with dementia.
Part I: Dementia Behaviors
The vast majority of individuals with dementia experience changes in their behavior during the progression of their disease. Here are common behaviors that can 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!” 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, a person with Alzheimer’s or another type of dementia 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 a common occurrence of daily living.
Memory loss accounts for many of such activities, as people with Alzheimer’s may forget that they just used the same phrase or already emptied the drawer. Being over-anxious and restless is another factor: they may fret about Johnny being lost or in trouble. In addition, 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 should try to remain calm, be patient, and perhaps redirect the person 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 the reason underlying 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 may be verbal or physical and are thought to be linked to forgetfulness, and to the frustration of having memories of people and events slip away. Aggressive behaviors can also be side effects from some prescribed medications or can arise as a result of physical discomfort, environmental factors, or communication difficulties.
Of the near five million people who currently have Alzheimer’s disease, the most prevalent type of dementia, more than half will exhibit aggressive behaviors at some point in their disease’s progression.
Once again, it behooves caregivers to first address and eliminate any physical triggers such as pain, hunger, being cold, or feeling unclean following a bout of incontinence. And as with responses to other behavioral changes (subsequently discussed), caregivers of individuals with Alzheimer’s disease do best by remaining calm, not being argumentative, and using calming body language and tone of voice.
Sleeplessness: Individuals with dementia often experience difficulty sleeping or changes in their sleep patterns. Researchers do not completely understand why sleep disturbances occur with dementia, but they seem to be caused by the impact of dementia on the brain. And while studies continue to find other risk factors for poor sleep, including depression, more than that is not known about restlessness at night. The best that caregivers can do in this context is to avoid stimulants, add exercise to the daily regimen, treat any pain, 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 individuals with dementia will at some point wander from the home, 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 person with dementia to simply pick up and go. A common occurrence is known as the “I want to go home” syndrome, when individuals with Alzheimer’s disease may not recognize their current surroundings and want to go back to a real or imagined childhood home, causing them to stir about and wander. Wandering can be very scary for caregivers, as it can have dangerous and sometimes fatal consequences for individuals with dementia. Some things you can do if your loved one wanders include: secure the environment, increase physical activity during the day, use ID tags and tracking devices, and let your neighbors know about your loved one with dementia and his or her tendency to wander.
For more information on common behaviors in those with dementia and potential solutions for how to respond, see our article on Dementia Behaviors.
Part II: Communicating with a Person with Dementia
Alzheimer’s and related dementia diseases have a progressive and degenerative impact on the brain that produces changes in the person’s personality and behaviors. In particular, changes in the ability to adequately communicate bring additional frustration and challenges to the process of caring for a loved one with dementia. It is also important to remember, as frustrating as it is for you as a caregiver, it can be quite devastating and upsetting for your loved one to experience these communication difficulties as well.
Here therefore are a few guidelines that may help caregivers better communicate with a loved one with Alzheimer’s disease and thereby bolster their ability to handle other adverse behavioral changes. Most importantly, better communication can also improve quality of life and daily experiences for both individuals with dementia and their caregivers.
Eight Tips for Communicating with a Person with Dementia
- Be supportive in more ways than one: When your loved one is trying to tell you something, assume a reassuring, unhurried stance. Show that you care, that you are fully there for them, and encourage him or her to talk or otherwise express their feelings. Be patient. And whatever the circumstances, let the person know that it’s okay and that you are not annoyed.
- Facts don’t help, but feelings do: For the most part, those in the mid-to-late stages of Alzheimer’s cannot articulate their thoughts or follow your logic. This doesn’t mean they can’t sense your feelings and tone. They can still react positively to sensory connections, expressed by way of a gentle voice, a soothing touch, a gentle massage, calming music, and other comforting actions. As Maya Angelou once said, “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
- Body language: Again, words may not matter as much as your voice, attitude, and body language. Look the person 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 them.
- Mirroring: Often involuntarily, people with Alzheimer’s disease tend to mirror the caregiver’s feelings or activities at any given time. In some cases, they might follow you around and imitate your actions. Instead of getting frustrated, try to see how you can benefit from that, 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 correct their behavior (especially if it’s harmless). Instead, try to read the signs and discern what feelings they are trying to express. For example, when the person shows signs of anxiety, try to 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 too many options. Instead, keep it simple, one step at a time, and use pointers or cues as to what you want the person with dementia to do. For example, if you want the person to arrange cards in a certain way, arrange the first few cards yourself as pointers.
- When they get upset: When your loved one 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 can be 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 loved one. Wrong judgments are part and parcel of caring for a person with dementia, and you should try to move on and not feel guilty about judgments made in good faith. Just be sure to learn from your “mistakes” and react in a different way next time. Don’t be afraid to ask for advice or assistance.
Ask an Expert
Is depression a stronger symptom in certain types of dementia?
Depression can be present in any patients with dementia, but people with Alzheimer’s Disease Dementia and Huntington’s Disease Dementia are particularly known to present signs of depression as early symptoms. Experts have estimated that up to 40% of people who suffer from Alzheimer’s also suffer from severe depression. This may be due to the progressive nature of Alzheimer’s disease, and the psychological consequences of knowing one is losing cognitive function. Depression in Huntington’s Disease, however, is not typically due to the disease diagnosis. People with HDD suffer from injuries to the brain and subsequent changes in brain function, which often lead to psychiatric disorders like depression.
I’m living with a loved one with dementia. Should I make any adjustments to the interior décor?
Home modifications are a required component of “aging in place.” Modifications to the home can lower environmental press, which is defined as “the basis of the varying demands environments place on the person,” and such a decrease in environmental press can create a “Zone of Maximum Comfort.”
Some questions to ask while considering changes to be made to the home include: Are the pathways well lit? Are there handrails on the steps? Is the door knob easy to use? Are stairs/handrails in good condition? Is there adequate lighting? What is height of sink, mirror and toilet? Are med cabinets accessible? Do rugs have non-slip tape underneath them?
How can I prevent my loved one from wandering away from me in public?
It can be difficult to keep track of someone who suffers from severe dementia, especially if they have aggressive tendencies. The most affordable and effective system to use is “Safe Return”, a nationwide identification system that is operated by the Alzheimer’s Association. The program provides the dementia patient with an engraved ID bracelet or necklace with a phone number to call if they are found. Their name is also inserted into a national database that has a 24-hour call center which can be accessed to sound an alarm that the person is missing, and to send an alert when they are found.
Part III: Depression: Symptom or Risk Factor?
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?
The findings are mixed. 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 argued that depression releases cortisol, a “fight or flight” neurotransmitter and a stress hormone that, when allowed to linger in our system, damages brain cells and contributes to Alzheimer’s or other types of dementia. And we know that depression can have negative consequences on our health.
It may not be one or the other. The current understanding in the field is that late life depression may contribute to dementia risk, but dementia also seems to lead to depressive symptoms.
Ask Grannie’s Grandson about Depression
“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.”
Individuals with early stage Alzheimer’s are understandably prone to feelings of depression. They are typically aware of the changes happening to their brain, over which they have no control, and they are typically not happy about becoming a burden to loved ones.
Part IV: The Holistic Care Model
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 person brings a unique set of givens, and that there is no silver bullet, no magic wand, that works for all people with dementia. Just as all people and all personalities are different, so are all people with dementia.
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 person with dementia, and takes into account the health, cultural, spiritual and emotional needs of all those associated with the person, and particularly the caregivers of persons with Alzheimer’s.
Person-focused dementia care: The holistic approach, a form of person-centered dementia care, enhances the person with dementia’s individuality by aiming to boost uplifting sentiments, nurture what each person with dementia can still do, and further their independence. This is an important shift of focus from what individuals can no longer do, or their cognitive deficits or disability, to focusing on the positive and their remaining abilities and qualities.
In practice, the physician healer incorporates into the care plan the person’s physical as well as psychosocial 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 others, and their caregivers can build on that desire by using the person’s life experiences to bolster that connection. As the disease progresses, caregivers can reintroduce their loves ones to their own personas and help them recover a feeling of control. In this form of constructive focus, people with Alzheimer’s can appreciate meaningful activities instead of pre-packaged programs.
For example, if a person used to enjoy gardening in his or her life, the caregiver can provide a few garden tools together with plant pots, soil and seedlings to give their loved ones a reinvigorated sense of purpose and contentment.
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 enjoy walking barefoot around the house and in the yard, then they should still be permitted to tread barefoot on a sunny day in the back yard. Continuing with prior activities can boost self-esteem and help alleviate feelings of stress and anxiety that are common in dementia.
Part V: Final Thoughts – Dear Caregiver
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 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 sometimes unrecognized shifts.
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 for our seniors with dementia without you? What would become of them, those millions of people who also didn’t do anything to deserve this fate.
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. Thank you.