Understanding Dementia Behaviors
Alzheimer’s and other forms of dementia have a profound impact on the lives of people throughout the world. Worldwide, an estimated 50 million people had some form of dementia in 2017. In 2019, there were roughly 5.8 million cases of Alzheimer’s dementia just within the United States. As the proportion of the US population that is seniors grows thanks to longer life spans and a large, aging Baby Boomer generation, cases of dementia are projected to increase dramatically.
Those with dementia use extensive caregiving services since they usually require 24-hour supervision for several years at the end of their lives. Currently, over 16 million people, such as spouses and adult children, provide full- or part-time unpaid care to someone with dementia. This means that nearly 5 out of every 100 Americans are caring for someone with dementia without pay.
It’s common for caregivers to leave fulfilling or profitable careers earlier than they planned on out of love for a relative with dementia. Many caregivers are also themselves elderly and may not be in the best health. Whatever their age and situation, caregivers have to figure out how to help their loved one stay as happy, healthy, and hygienic as possible in spite of the gradual loss of communication, mobility, and self-care skills that comes with dementia. This responsibility can lead to elevated rates of depression and poor health in some caregivers due to a variety of factors like worry, isolation, and lack of rest.
Too often, dementia caregivers feel lost and overwhelmed as they witness their loved ones adopting new and troubling behaviors that they don’t know how to handle. To de-mystify the caregiving experience and make it more manageable, we’ve created a guide that will cover how to respond to many common dementia behaviors, how to improve your communication with those who have dementia, and where to look for more information on dementia.
The Basics of Dementia
If your loved one has recently been diagnosed with dementia, you may be struggling to understand the basics of what dementia is and what causes it. Remember that dementia is a general term referring to cognitive impairment, especially memory loss, that significantly changes daily life. Under this umbrella term, there are many kinds of dementia. Below we’ll explore some of the most common types, as well as some factors that increase a person’s risk for developing dementia.
Types of Dementia
The overlap of symptoms between different types of dementia is quite extensive, and keeping their definitions straight can be a challenge. Below we’ve included brief explanations of the most common kinds of dementia as well as resources that delve into the specific symptoms of each dementia.
Alzheimer’s symptoms start with minor lapses in memory that grow more severe over time and can grow to include things like hallucinations, vision problems, mood swings, and many other symptoms, leading to loss of independence. As with most dementias, not every patient will experience all possible symptoms. A hallmark of Alzheimer’s is the plaques and tanglesthat form in brain tissue and are thought to kill brain cells. This disease accounts for 60%-80% of the cases of dementia in the United States. The uncertainty in this number arises from the fact that there’s no universal test for Alzheimer’s. Doctors diagnose it by conducting interviews, giving written and verbal tests, and using brain imaging and blood tests to rule out other conditions. Read this article to learn more about Alzheimer’s symptoms.
Vascular dementia is brain cell death caused by reduced blood flow and damaged blood vessels within the brain. Cardiovascular disease and related problems like strokes are tied to this cognitive dementia, which may worsen gradually or suddenly, depending on the patient’s exact cardiovascular condition. The symptoms of vascular dementia depend on which areas of the brain are damaged by strokes, restricted blood vessels, and other problems. Patients may have problems with short term memory, reasoning and problem solving, muscle control, attention, mood, and more. It can be difficult to diagnose vascular dementia because it can present the same symptoms as Alzheimer’s. For more information on causes and symptoms, visit the Mayo Clinic’s article on vascular dementia.
Lewy Body Dementia
The exact cause ofLewy body dementia (LBD) is unknown, but the disease is known for its accumulation of abnormal alpha-synuclein protein deposits within the brain. Hallucinations are very common in Lewy Body dementia, as are problems with memory and dramatic fluctuations in the patient’s ability to pay attention to their surroundings. Movement problems such as tremors, falls, and fainting are also common. This disease is sometimes but not always tied to Parkinson’s Disease. The National Institute on Aging (NIA) estimates that about one million Americans have LBD. Read “What Is Lewy Body Dementia?” by the NIA for more information on signs, symptoms, and treatments.
Typically, dementia is described as an irreversible cognitive decline. However, some syndromes and conditions that cause dementia-like cognitive impairments can be partially or fully cured with swift medical intervention like surgery, a lifestyle change, or doctor-prescribed supplements. Examples of things that cause these “reversible dementias” include brain tumors, hormonal deficiencies, Korsakoff syndrome (a severe B vitamin deficiency usually related to alcohol abuse), many kinds of substance abuse, and improper nutrition. Diagnosing dementias such as Alzheimer’s often involves questions aimed at ruling out these reversible dementias.
Sometimes elderly adults will develop multiple kinds of dementia at once, a condition referred to as “mixed dementia”. For example, a patient with Alzheimer’s may suffer a stroke and experience additional or worsened symptoms from vascular dementia’s damage to a specific region of the brain. Mixed dementia can be difficult to detect since the symptoms of different kinds of dementia are often similar despite their differing causes. The Alzheimer’s Society in the United Kingdom estimates that about one in every ten people with dementia has mixed dementia.
According to the World Health Organization (WHO), there are many types of rare dementia besides the ones listed above, and the differences between them are often difficult to define. Nearly all follow a progression of early, late, and middle stages as defined in the above WHO article, but the causes of the symptoms may differ. Creutzfeldt-Jakob Disease, Huntington’s Disease, frontotemporal dementia, and HIV-Associated Dementia are just a few of the less common kinds of dementia.
Dementia Risk Factors
As scientists look into possible causes and cures for different kinds of dementia, they unearth new information about who is at the highest risk of developing dementia. Below we’ve provided some information on some of the most common risk factors known so far. It’s good to remember that this information reflects statistical risk, not actual experience for a given individual. Some individuals could have many risk factors and still not develop the disease.
Heart Disease and Diabetes: Some chronic diseases such as cardiovascular disease and diabetes, which themselves are frequently linked, are risk factors for dementia. The CDC provides more information on the connection between heart and brain health. Diabetes, especially Type 2, is thought to increase a patient’s risk of dementia because it can cause damage to blood vessels within the brain.
Genetics: Some forms of dementia, including rare early-onset Alzheimer’s, Huntington’s Disease, vascular dementia, and others have a genetic component. However, the role that genes play in the development of a disease is complex, involving multiple genes. Having a relative with dementia does not mean that you yourself will develop that dementia later on. Usually, the increase in your risk of developing dementia is moderate and may be reduced by lifestyle changes. If you want to learn more on this topic, the Alzheimer’s society has an in-depth reviewof the role that genes play in different forms of dementia.
Traumatic Brain Injury: Numerous studies show relationships between a history of Traumatic Brain Injury (TBI) and dementia. Some studies suggest that repetitive mild brain injury, such as is common in boxing, football, and some other sports, is linked to an increased risk of dementia. Studies of veterans’ long-term health outcomes suggest that TBI can increase the risk of developing dementia by as much as two times the risk for someone without a history of TBIs.
Lifestyle: Factors like inactivity, isolation, untreated mental health problems, poor nutrition, and substance abuse all seem to play a role in the risk of developing dementia. Based on these risk factors, the Alzheimer’s Association has published a lifestyle guide for brain health called 10 ways to love your brain. Reducing your risk takes dedication to a healthier life, but it doesn’t have to be complicated.
Understanding and Responding Appropriately to Dementia Behaviors
Dementia causes a series of significant personality and behavioral changes over time. These changes won’t occur in the same way in all patients or for all kinds of dementia. It’s also very common for some behaviors to come and go according to circumstances. Behaviors can range from merely difficult and annoying for the caretaker to outright unhealthy or dangerous for the patient and others.
For all of the behaviors below, it’s crucial to keep the senior’s medical team updated on changes. The appearance of a new behavior may warrant a physical exam to rule out undetected physical problems or the need for a medication adjustment. Read on to learn more about practical solutions and compassionate practices for responding to troubling behaviors.
Sundowning, also called late-day confusion, is the phenomenon of seniors with dementia becoming more active, confused, and agitated in the afternoon and into the night. They may be unable to sleep and they may wander and look for something to do. They might also experience emotional distress. Sundowning can cause caregivers to become sleep deprived if it continues late into the night.
How to Respond to Sundowning:
- Reduce Sedentary Daytime Behaviors: Try to get the senior on a better nighttime schedule by reducing the amount of sitting and napping they do during daylight. More exercise, a hobby, and more social time during the day may help the senior to be naturally calmer in the evening. Consistent daily schedules and scheduled calm activities at night will help, too, since dementia makes dealing with changing routines emotionally and physically challenging.
- Change the Lighting: Some theories suggest that using special light therapy boxes in the morning hours can help seniors’ circadian rhythms normalize, leading to better nighttime hours later. Lightbox therapy is also used for conditions such as seasonal affective disorder (S.A.D., a depressive disorder), and sleep disorders in people of all ages and health conditions. Getting morning sunlight, within reason and while being careful of over-exposure, may have a similar effect.
- Get Help: Contact your loved one’s doctor and ask if they have any suggestions for adjustments. Recognize that your loved one may simply need less sleep than they used to or than you do. Consider adding a nighttime helper to your care plan so that you do not become exhausted and unable to cope with your duties.
Wandering may be one of the first symptoms of dementia that relatives notice. Wandering can involve walking from room to room and not knowing why, leaving the house and walking aimlessly, or getting lost while driving or walking in a familiar place. As memory loss progresses, the names and landmarks of familiar places lose their meaning for the senior. While wandering within the home may not pose a real problem, wandering outside of the home can put a cognitively impaired senior in serious danger.
Causes of Wandering:
- Looking for a room, person, item, or activity
- Trying to get away from a stressful situation, including a noisy room or a person the senior does not recognize
- Feeling physically uncomfortable due to hunger or the need to use the restroom
- Trying to return to something remembered from the past such as a job
How to Respond to Wandering
- Invest in Security and Accessories: Door alarms, specialized “childproof” locks, or GPS enabled accessories can all prove useful for keeping track of a senior who is prone to wander. You can also provide the senior with a medical bracelet engraved with “[first and last name], dementia patient, [your address and your phone number]” so that they can be identified easily if they do wander.
- Limit Access to Vehicles: If there’s a car in the garage at the senior’s residence, it may be wise to keep the car keys out of reach. Seniors with dementia won’t remember that their doctors don’t want them to drive anymore.
- Ask If They Need Something: When the senior is wandering, you can ask if they are looking for the bathroom, a snack, a drink of water, or some other common item. Whether or not they were actually looking for any of these things, they may, in fact, need and/or welcome them.
- Alleviate Boredom: You may be able to minimize the senior’s urge to wander by providing meaningful and fun activities. Gardening, light exercise, a simple art or craft project, a puzzle, cooking- anything that they enjoy and can do safely with you inside or outside of the home. Such activities can help them to feel fulfilled and less restless.
Withdrawal from Social Settings
Seniors who begin to struggle with names or are frequently confused may be terribly overwhelmed by social situations, feeling shy, embarrassed, or tired. Their discomfort with socializing may also manifest as anger or worry. They may struggle to know what to talk about or feel unsafe talking to people they now view as strangers. It’s also very common for seniors in the early stages of dementia to be depressed, so the social withdrawal may be related to mood, which you may need to discuss further with the doctor.
How to Respond to Social Withdrawal:
- Modify Social Time: Modify social time to make it less overwhelming. This may include attending events with only a few other people present, staying a shorter amount of time, checking in with the senior to see how they are feeling, or choosing less noisy locations for socializing. You may also consider bringing along a comfort item for the senior- whatever it is they like best, perhaps a knitting project, prayer or worry beads, or any fidget device.
- Help Others Understand: Warn friends or family of things you know to be distressing to the senior. Explain the nature of dementia and the stage the senior is in to remove any stigma or misunderstandings that your social circle may have about communicating with your loved one.
Incontinence and Related Issues
Incontinence is the loss of control of bladder or bowel function, and it occurs frequently in the middle and late stages of dementia. Other problems related to urination and bowel movements, such as urinating in unconventional places (trashcans, potted plants, etc.) or not wiping adequately can also occur as a part of dementia. Frustration and distress can quickly surface for caregivers who don’t know how to help their loved ones and don’t know how to keep up with cleaning furniture, the floor, or clothes and bedding that are soiled.
Common Causes of Incontinence and Bathroom-Related Issues:
- Forgetting how to find the bathroom
- Having obstacles in the path to the bathroom
- Forgetting what the appropriate response to the feeling of needing to go is
- Being dehydrated, constipated, or having a urinary tract infection
- Having an undiagnosed prostate problem
- Being unable to express the need for help with bathroom tasks
- Medication interactions
How to Respond to Incontinence:
There may not always be a fix, per se, for incontinence caused by dementia, but there are many ways to improve the seniors’ ability to use the restroom more regularly.
- Speak with the Doctor: Call the senior’s doctor and discuss whether or not they need to be checked for a medical problem that’s causing loss of bladder or bowel control. The doctor may suggest switching medications or testing for infection. They may also give guidance on when it might be necessary to use incontinence products like adult diapers.
- Provide Cues and Clear Obstacles: Bathroom cues can include scheduled reminders from you (every one or two hours, for example), a label with a toilet picture on the bathroom door, or an offer to walk the senior to the bathroom from time to time. Clearing obstacles can include making the path to the bathroom free of clutter and leaving the bathroom door open and the seat cover up to make finding and using the toilet easy.
- Don’t Infantilize or Scold: For most people, the last time they had to help someone with using the restroom was when they were raising small children. For some, it may seem natural to revert to using childish words or even scolding when dealing with this incontinence. Both of these actions can be embarrassing to the senior, whether or not they can say so. Stick to adult words for biological functions, provide help without taking over more than is necessary, and don’t shame the senior for an accident.
Agitation and Anxiety
Agitation and anxiety can manifest as pacing, shouting, unkind words, physical violence, crying, panicking, fearfulness about once-familiar things, and more. This behavior may be a complete change from the person the dementia patient used to be.
Common Causes of Agitation and Anxiety in Dementia Patients:
- Untreated pain such as an undetected infection, sore, rash, toothache, or headache
- Hunger or thirst that the senior cannot verbalize
- Hallucinations that are scaring the patient
- Frustration from feeling rushed or talked down to
- Feeling disconnected from people and reality, feeling lost and alone
How to Respond to Agitation and Anxiety:
- Remain Calm and Respectful: If the senior is especially agitated, giving them some physical space or walking into the other room for a moment to calm yourself may be the best thing you can do. If you’re going to walk away for a bit, make sure your loved one is safe first. Once you feel calm, ask permission to help them, offer a kind word with a calm voice, and make eye contact. It may help you to remember that agitation isn’t personal or a true reflection of how the person feels about you. It’s simply a reaction to factors beyond the patient’s control.
- Meet Needs: As with most troubling behaviors, the cause of agitation may be their inability to communicate well about a need. Find out if hunger, thirst, uncomfortable clothes, pain, or the need to relieve themselves is causing them to act erratically. Try turning off music or television and altering the lighting to see if those changes help. Maybe the senior doesn’t remember the right word for their need or isn’t sure who to ask for help. Encourage them to point, mime, make a sound, or describe what they want.
- Provide Medication: Medication is never the first choice for treating agitation due to inevitable side effects, but sometimes a doctor will prescribe something calming. Antipsychotic drugs, for example, can be prescribed in cases where hallucinations are consistent and frightening. Be aware that sometimes you might try out a medication only to discover that it doesn’t work as intended for the senior. Communication with the doctor is vital.
Perseveration is a repetitive speech or action that arises from changes in the brain. A senior who has problems with perseveration might try to eat all the apples in the fridge, not realizing they’ve already had a few. They might say a word or phrase repeatedly or might repeatedly voice the same worry or question. Caregivers may become irritated or distressed by the repetition, and they may have concerns if the person is doing something that could lead to health problems.
How to Respond to Perseveration:
- Be Patient: Recognize that the impulse to repeat an action or question is probably entirely beyond the person’s control. If you notice that certain topics or items trigger perseveration, simply avoid discussing them or having them around unless necessary.
- Limit Access: If a certain object such as a noisemaker or food is the subject of preservation, and you deem it to be harmful, unhealthy, or too disruptive, consider putting the item in an out of the way place. It’s often especially important to keep sweets, alcohol, and supplements out of reach to avoid overuse.
- Distract: Try to steer the senior towards an alternative subject, action, or item. Do something enjoyable with them, get them out on a walk or bring up and old story from their past that you know brings them joy.
Paranoia, Accusations, and Hallucinations
Some seniors will experience hallucinations which may or may not be accompanied by paranoia, depending on the kind of hallucination. With or without hallucinations, paranoia is common. Confusion and changes in the brain can lead to mistrust. As the senior misplaces items of their own, they may become convinced that someone is stealing from them. Making accusations of family, friends, and even strangers is quite common. Make sure you keep your loved one’s doctor updated on these symptoms.
How to Respond to Paranoia, Accusations, and Hallucinations:
- Be Compassionate: When dealing with a hallucination, you can state that you don’t see what they see, but avoid trying to convince them that it’s not there. Don’t argue, just reassure them that they are safe. Turning on lights, closing curtains, or moving to another room may diminish hallucination. When dealing with paranoia, accusations, or hallucinations, assure them that you care that they are upset. Realize that accusations are just a symptom of the disease and aren’t intended to hurt anyone’s feelings.
- Help Them Look: If the senior has lost something and is accusing others of taking it,help your loved one look for it rather than focusing on the accusation they are making. Provide distraction if it’s unlikely that the item will be found, and consider replacing the item later if it’s something that the senior will repeatedly miss.
Seniors with dementia have problems related to foodfor a number of reasons. Changes in their brains may dull their senses of taste and smell, making food seem flavorless and boring. Loss of muscle control and strength can occur in dementia, too, making handling utensils or eating things like soup or spaghetti stressful. Sometimes vision and brain function issues can also lead seniors to have difficulty telling what is food, what is a plate, and what is the table.
How to Address Eating and Nutrition Problems:
- Focus on Favorites: Providing favorite foods may help seniors be more enthusiastic about eating. Having them help you with simple cooking tasks may also help them be more interested in the final result.
- Snacks: If eating is so stressful that the senior does not finish meals, add small, healthful snacks throughout the day. You could even keep prepared snack packs towards the front of the refrigerator for a senior who is prone to rummaging through the refrigerator.
- Simplification: For those having problems with fine motor skills or vision, a simplified meal that can be eaten with the hands without much effort is ideal. Using a plate color that contrasts with the food and a contrasting placemat or another surface beneath the plate can help those with vision problems.
Bathing and Grooming-Related Problems
Seniors who have dementia often forget to change to fresh clothes, bathe, brush their hair or teeth, clip their nails, or otherwise take care of their bodies. When reminded to do these things, some may show signs of anger, getting offended out of embarrassment or simply being frustrated. Seniors may cease to understand why self-care is important or how to do it, or they may intend to do it but lose their train of thought in the middle of a task.
How to Address Bathing & Grooming Problems:
- Provide Simple Direction: For things like brushing teeth and combing hair, provide as simple directions as possible, only giving the direction as it is needed. It may help to lay out what’s needed or to get rid of excess items so that making a choice isn’t visually overwhelming.
- Make Self-Care Comfortable and Fun: Pay attention to things that make your loved one light up, like specific colors, patterns, or fabric textures. Find a nail polish color that makes your mom happy or buy several Hawaiian shirts if that’s what your dad prefers, for example. Make getting dressed and looking put together fun if at all possible. More importantly, make it comfortable. Provide choices that are loose, stretchy, and that use easy buttons, Velcro, or elastic. Avoid pullover shirt styles that may require more coordination than the senior has.
- Schedule Appointments: Many seniors have difficulty reaching their feet and may develop overgrown nails or calluses that are painful. You may find it best to schedule pedicures to maintain proper foot care. Keeping up with hair cuts, while not strictly speaking a health concern, may help your loved one to feel confident. Consider having a professional visit the senior in their home if going into a noisy shop agitates the senior too much.
Loss of Inhibitions
Those with dementia may lose some inhibitions due to a number of factors. If they have frontotemporal dementia, their ability to reason and decide if something is appropriate or not can be seriously damaged. Even for those with other types of dementia, awareness of learned social norms fades, causing them to become more impulsive. Sometimes dementia causes an increase in sexual drive, although this is not universal and sometimes the opposite is true.
Common Signs that Loss of Inhibitions Is Happening Include:
- Generally rude or discriminatory comments to or about others
- Using uncharacteristic explicit language or profanity
- Talking with strangers in a very trusting or open manner
- Sexual comments, undressing, or inappropriate touch to self or others
How to Respond to A Loss of Inhibitions:
- Taking the Situation into Account: How you respond to a loss of inhibitions depends on what action the senior is taking and how harmful it may be to others or themselves. In the case of rude comments, you probably won’t convince the senior to stop, and distraction is your best option. It may be helpful to explain later to others that the senior didn’t understand how hurtful they were being. If your loved one is having a friendly conversation with a stranger, on the other hand, there may be no need to intervene unless you feel that he or she is giving out too much personal information.
- Dealing with Sexual Behaviors: A loss of sexual inhibitions may be nothing more than an occasional off-color comment. In this case, it’s best to steer the topic elsewhere or provide a distraction and apologize to anyone offended later. However, it can be more serious and even upsetting or aggressive. A senior with dementia should be well-supervised around children or anyone who might be disturbed, upset, or harmed by the senior’s lack of awareness of what is inappropriate. If as a caretaker you’re facing problems in this area and you are unsure how to handle it, speak with a doctor or a psychologist who specializes in elder care. Although it’s a delicate subject, speaking with a professional can help you formulate a better plan for how to respond in the future and how to keep everyone safe and happy.
Ten Tips For Communicating With A Person With Dementia
1: Use Tone of Voice and Facial Expression to Convey Calmness
Sometimes nonverbal cues are the most important way that the patient will be able to feel loved or reassured. If you’re telling a loved one that everything is okay when he or she gets confused, it’s important that he or she sees a smile and a kind look at the same time. Facial expression and tone of voice are far more universal than words. You may even find that staying emotionally engaged and putting in the effort to present a loving demeanor leads to loving nonverbal responses from those who no longer speak much.
2: Laugh Together
Traditional wisdom has long held that “laughter is the best medicine, ” and research seems to back that claim, at least when it comes to stress relief. Laughter has short- and long-term benefits for blood pressure, the immune system, and many other parts of the body. Being a caretaker is stressful, and suffering from a degenerative cognitive disease is as well, so be intentional about bringing gentle humor into both of your lives.
Laughing at yourself when you make a mistake can help your loved one know that you don’t take mistakes too seriously. Enjoying an old favorite comedy together during downtime could bring laughter and old memories. Telling a joke that you think your loved one will remember from the past can also help you share a moment together. Laugh at the antics of your dogs or cats; find joy in the little moments. Remember to never mock or laugh about topics that are sensitive for your loved one, and you can’t go wrong laughing together.
3: Use Reassuring Touch
It’s so easy for seniors with dementia to feel disconnected from the world around them. Their grasp of reality often doesn’t fit with the facts, creating mental discord on a regular basis. Sometimes people with dementia also experience abandonment or increased emotional distance from loved ones who are unsure how to interact with them.
One powerful, healing way to reconnect with a struggling, possibly depressed dementia patient is through touch. According to UC Berkeley, touch is crucial to human health, and massage therapy successfully reduces stressin those with Alzheimer’s disease. A massage, hand-holding, a touch on the arm, or a gentle tap on the knee may help shift the person’s focus from something stressful, providing instant relief and reassurance. Always, of course, be mindful of the person’s preferred personal boundaries.
4: Provide Names and Relationships Cues
It’s a good idea to casually but frequently provide information on people’s names and relationships to your loved one who has dementia. Being proactive about providing information saves your loved one the embarrassment of having to ask or of trying to cover their confusion. It may help them feel more comfortable making conversation. Of course, if they indicated that they don’t need help or that they find it embarrassing, don’t do it. What makes your loved one most comfortable is paramount.
When your loved one progresses to a late stage of dementia, you will also need to start identifying yourself for them whenever you approach them. Most experts advocate only approaching and addressing a dementia patient from the front so that they aren’t startled or disoriented. Approaching from the front and identifying yourself helps your loved one be at ease.
5: Don’t Argue About Reality
Your loved one will have more and more misconceptions about reality as their disease progresses. Paranoia, mistakes about what year it is, hallucinations, and problems keeping track of who people are or what is happening will likely cloud their perceptions. They may forget that they’ve already done or said something, and they may be offended if you contradict them. Feel free to express that you don’t see things the same way they do, but keep in mind that providing a distraction is better than arguing about the facts. It’s highly unlikely that you’ll be able to eradicate a delusion since the nature of the disease will prevent the retention of new facts.
6: Keep Questions, Choices, and Instructions Simple
Keeping seniors with dementia involved in their own lives as long as possible preserves their sense of dignity and keeps them mentally sharp longer. Making choices, expressing opinions, and preparing themselves for their day can positively impact their mood. The catch is that having to make choices that are too complicated will have the opposite effect. Being presented with five different options for a shirt to wear or a meal to eat will confuse and overwhelm many seniors, leading to agitation or withdrawal. Similarly, receiving instructions that have too many steps will have a negative effect on most. Limit a choice or instructions to just two items or one step at a time, provide visuals, or do the desired action alongside the senior so that they can imitate.
Most importantly, if you’re seeing that they are frustrated with choices or instructions, be prepared to simplify further and to ask yourself if you’re missing something. Maybe there’s a problem or fear you don’t understand. Maybe the senior has a definite idea about what they want and it isn’t a choice that you gave. If they’re having trouble with words, you can ask if they’re like to show you what they want. Be creative in communication, be patient, and be willing to change your plan if you realize the task or choice isn’t working for your loved one.
7: Avoid Talking Down To or Over the Senior
Do not assume that because your loved one struggles to understand the world that he or she won’t grasp when someone is talking about or talking down to him or her. Try not to make assumptions about how much your loved one understands. Help others understand how being talked about might be humiliating for your loved one. Alter your communication by speaking slightly slower and more clearly and by making lots of eye contact, but be careful of your wording. Strive to use words that preserve a sense of equality and dignity, avoiding anything that could sound patronizing.
8: Look for an Underlying Cause
Behavior is often just an expression of some kind of need or mood. It may not make sense logically, but whenever a problematic behavior occurs you can run down a list of possible triggers.
Common Triggers For Difficult Behaviors:
- Untreated pain or new health problems
- Feelings of isolation and boredom
- Feelings of overstimulation from noise, crowds, television, clutter, or other sources
- Fear of falling and feeling unsafe
- Declining muscle strength leading to frustration
- Hunger, thirst, or even malnutrition due to difficulty with eating
- Needing to use the restroom
- Medication side effects
Many of the above problems can be solved, and doing so may reduce symptoms of difficult behavior. Paying attention to triggers improves the quality of life for seniors who struggle to communicate. Ultimately, however, you cannot fully eliminate difficult behaviors.
9: Encourage Your Loved One to Use Gestures
When a word is too hard to find, or when your loved one stops speaking entirely, keep them communicating by encouraging them to use gestures. For those who aren’t very mobile, you might consider bringing choices close to them so they can reach for what they want. Encourage any gesture, mimicking, or facial expression that helps your loved one communicate. Although they are harder to reach at this stage, your loved one likely still has the capacity to enjoy attention, interaction, and having a measure of control over small daily choices.
10: Foster Connection Through Positive Sensory Experiences
Another tool you can reach for to improve communication and emotional connection is sensory experiences. A sensory experience- anything that engages the senses- can include enjoying music, taking an art class, scrapbooking, singing, dancing, nature walks, interacting with animals, gardening, cooking, and much more. Try a few different activities, and don’t be discouraged if the first isn’t a good fit for the senior’s tastes and abilities. If you find an activity that you can both enjoy, you may find that it brings you closer and keeps you both happier.
If you still have questions about caregiving and dementia, consider looking at the collection of resources below. We’ve pulled together some of the most well-researched and user-friendly websites available so that you can view articles, videos, and more on the topic of dementia.
|Resource Page||Source||Type of Resource||Topic|
|Caring for Yourself When Caring for Another||Center for Disease Control||Article||Caregiving Help|
|How Alzheimer’s Changes the Brain||National Institute on Aging||Video||Understanding the Brain|
|Common Questions About Participating in Alzheimer’s and Related Dementias Research||National Institute on Aging||Article||Research and Clinical Trials|
|Dementia||Medline Plus||Master List of Online Dementia Resources||Virtually All Dementia Topics|
|Dementia Care (including Alzheimer’s Disease)||U.S. Department of Veterans Affairs||Article & Resource Lists||Tips and Resources for Veterans with Dementia|
|Forgetfulness: Normal or Not?||National Institute on Aging||Article & Infographic||Information for Distinguishing Between Typical and Atypical Forgetfulness|