Understanding & Dealing With Dementia: A Practical Guide For Caregivers in 2024

With the onset of dementia in a loved one, you may quickly take on the caregiver role, if not look for a memory care community for longer-term care. This disease can come on gradually over time, with signs showing quite early. In other instances, it can progress very rapidly. But either way, no one is ever prepared to handle the challenges brought on by a dementia diagnosis. 

However, getting a good understanding of the disease and knowing how to approach a person with dementia early on can help you navigate this new world much easier. We have some tips on understanding and dealing with dementia that can help caregivers and family members face the challenges that come with such a diagnosis.

Dealing With Dementia: Tips for Communicating

Dementia is a biological brain disorder that progressively makes simple tasks very difficult for people. With memory and communication being two of the hardest-hit abilities in these patients, it’s critical to know how to communicate properly with them, making it a little easier for everyone involved. Here are a few things caregivers can do to help facilitate better communication with dementia patients.

Be Patient

It is very important to remember to always be patient with someone with dementia. They may take time to process questions being asked of them or to complete tasks, so patience is absolutely key. Pressuring someone to do something they don’t want to do or don’t know how to do at the moment can make them frustrated or even irate, so keep calm and let them take their time.

Speak Clear and Direct

To make sure they can understand what you’re saying, even if they are pretty well cognitively, speak slowly and in a clear tone. It can take a few times for them to understand you, and if that’s the case, try saying the same thing in a different way. Also, make sure you clearly state names (instead of he/she/they), places, and what you will do.

For example, instead of “Your son is here to visit. Why don’t you go sit with him for a while”, try “Your son, Gary, is here to visit with you. Let’s sit on the couch next to Gary and chat for a while.” 

A dementia diagnosis does not automatically mean there is hearing loss. Using loud voices when there isn’t a hearing impairment can be condescending and lead to irritation.

Use Positive Expression & Tone

Go into the conversation with very positive energy and attitude. Humor, smiles, laughter, and a good attitude can help guide the conversation in a way that keeps everyone engaged and happy. Using facial expressions, affectionate touch, and a happy tone of voice can help convey your message that otherwise might be missed if you were to speak and act very monotonously.

Minimize Distractions

For someone with dementia to really pay attention to the conversation, you may need to eliminate any surrounding distractions. Turn off the TV, radio, or shut the door to keep out any outside noise. Make eye contact and use non-verbal cues like sitting down if they are sitting, standing if they are standing, basically getting to that one-on-one level so they can easily pay attention to you and only you. This is very important when trying to help them complete a task like getting dressed, take some medication, or eat their food. If they lose focus, it can be difficult to get back on track.

Ask Very Simple Questions

Any questions you ask should be easy to understand and answer. Instead of saying, “Hi Richard, We were wondering if you might want to take a walk before going to eat your lunch this afternoon?” try “Richard, can we go for a walk?” or “Richard, it’s time to eat.” Always address them with their name and allow them a moment to process and react or answer the question.  You don’t want to overwhelm them with long-winded questions or by asking too many at once.

A great way to continue to promote independence and self-autonomy even as dementia progresses is to offer simple choices. For example, “Julio, would you prefer to wear your green shirt or blue shirt today?” When you give simple choices, you offer a supportive environment that allows your loved ones with dementia to still have some control over their life.

Reassurance is Key

People with dementia often feel confused, uncertain, and anxious. By always responding to them with reassurance, you can help confirm their behavior or responses in a positive manner. A reassuring look, response, hug, handhold, etc. can be essential to making them feel less anxious or confused.

Listen and Pay Attention to Queues

Caregivers will often say you need to listen with your whole body when it comes to caring for someone with dementia. This means that many of their responses may be non-verbal, so you can’t simply rely on them answering your question or responding in a straightforward way. By listening with your ears, eyes, and heart, you can pick up on these queues that can tell you what they are feeling or trying to say. Their behaviors and movements may tell you a lot more than what actually gets said—usually not much in the later stages where speech is severely affected.

It’s important as a caregiver to not take irritation and sometimes aggressive behaviors personally. This is often a sign of frustration and confusion about what is going on or why certain things are harder to do or remember. Reacting to aggressive behavior with kindness and compassion, and remembering that this behavior really isn’t targeted at you personally, will help both the person with dementia and the caregiver better cope with this challenging time.

Bring Some Nostalgia

One behavior sometimes found in dementia patients is their ability to remember things from long ago, but not something that just happened. Commonly, short-term memory is the first to go in people living with dementia. This leaves them with a seemingly uncanny ability to recall memories from many years ago, even if they cannot remember what happened earlier that day. Talking about nostalgic things like music from the times they were growing up or movies and actors they loved from back in the day can help them engage and share things they remember about their lives. Playing music and movies from their era can be a great form of therapy for them, and it really cheers them up and can improve their mental health.

Handling Troubling Behavior

One of the most complex parts of dealing with someone with dementia is their ever-changing behaviors that worsen over time. Both personality and behavior can drastically change in dementia patients and require some ground rules from the caretaker and loved one to navigate these changes. Handling these troubling behaviors requires the entire care team to be on the same page and make the appropriate efforts towards the person that won’t exacerbate the situation. Here are some critical things to do when dealing with these personality and behavioral changes.

Roll With the Punches. These behavioral changes may come on slowly over time or can be very abrupt. And the best thing you can do for yourself and your loved one is to accept what is happening and do your best to take what is given to you and roll with it. Avoiding the issues or being in denial of what’s happening will only hurt everyone involved.

Know What You Can and Cannot Change. In line with rolling with the punches, it’s essential to know that you cannot change this person. Their disease is taking over, and the progression will change their personality, behavior, and even physical attributes of their being. What you can change, however, is how you react and accommodate these changes. You may need to change your mindset many times as the behavior continues to change and their health declines—but accepting that is key to navigating this disease.

Seek a Medical Opinion. Sudden onset of behavioral issues or personality changes could be a sign of something medically wrong aside from dementia disease. Your loved one could be experiencing enhanced anxiety or depression or even be physically ill, and it’s being expressed subconsciously with drastic changes in their personality or behavior. So a visit to the doctor can be critical to ensuring they get the care they need as early as possible if this is the case.

Understand the Behavior. As verbal communication deteriorates in these patients, behavior becomes a key point of communicating their wants or needs. It’s important to realize their odd or destructive behaviors may have a purpose and reason behind them. A loved one with dementia may be feeling bored or under-stimulated, and so they will fidget more, move things around in their room, or not be able to sit still when they need to. Paying attention to repeat patterns of these actions can be vital in recognizing what the person with dementia is trying to say.

Be Flexible and Ready to Shift Quickly. Like we’ve stated before, these behavioral and personality changes can happen quickly and without warning. Caregivers and family members will need to be flexible and willing to shift their views or techniques at a moment’s notice. What worked last week with their behavior may change this week as the disease progresses or is paired with triggers that can make behavior and things like anxiety and depression worsen.

Know You’re Not Alone. For family members of people with dementia, it is understandably challenging to navigate the process. And you are not alone. Utilize the resources and the care teams available to you. They are pros, and this isn’t their first rodeo, so they can help you navigate the trials and tribulations that come with dealing with dementia in a beloved family member. There are also support groups and non-profits who can help families through this time with resources and support around the clock for whatever they may need: advice, grief counseling, a shoulder to cry on, and informative resources to ensure everyone’s needs are being met.

Dealing with a person with dementia is not often a one-size-fits-all approach with one way of doing things. This is because there are many symptoms and behavioral issues that can come with the disease that not everyone will have. It’s important to know what potential troubling behaviors there are and what to expect when or if they occur.

Wandering

Wandering is a prevalent behavior and one of the most concerning in dementia patients. Someone with dementia will simply walk aimlessly for many reasons, but if they are not in a secure location, they can wander outside and get severely lost without any idea of where they are or how to get back home. There are some critical steps to take that can keep your loved ones safe and provide a safe return should they wander far away from home.

• An exercise routine can help alleviate a need to wander if they are doing it out of restlessness. Dementia patients may just think they need to be out walking or doing something because they did it in their previous lives and will take off on their own. This subconscious act can potentially be remedied with regular and frequent exercise to ensure they get the stimuli they need physically.
• If this person lives in a home or your home, be sure to tell your neighbors about their condition and potential to walk off on their own. This can help build a team of people on the lookout if they ever wander away outside.
• Try preventing them from physically opening any doors to the outside. You can install child-proof door handles, and even locks installed up high or down low on the door. For more drastic measures, you can install locks requiring a key to open, but proper fire and safety measures must be taken so that they can be opened quickly in an emergency.
• Make sure your loved one always has some sort of identification on them in case of wandering. This may be a medical id bracelet that never comes off, or if they don’t like wearing something like that, people will often sew their ID details into clothing as a patch that can be quickly seen and recognized.
• And lastly, register your loved one or your patient with the Alzheimer’s Association 24/7 Wandering Support. This program will help families and first responders to quickly reconnect with a loved one who has wandered off. The program offers 24/7 emergency support, a medical id tag, a quick family notification system, and community support in the event of a large-scale search needed.

Sundowning

Sundowning is maybe something you’ve heard of even before dealing with someone with dementia. Sundowning refers to behaviors and personality worsening in dementia patients later in the day or as the sun is going down. It’s suggested that this may be because of the changes to their brain affecting their internal clock, and they don’t realize the difference between day and night any longer. Or, it can just be from them being tired from the day and being overstimulated. Some ways to combat sundowning or sleeplessness include;

• Adding more physical activity in the day and removing naps or more sedentary activities. This can help them tire and know when it’s time to go to bed.
• Pay attention to any environmental triggers or certain foods or drinks that fuel this sundowning behavior and keep them awake into the night. Eliminating sugar and caffeine, in general, can help with behavior even beyond sundowning and trouble sleeping.
• Help people with dementia wind down in the late afternoon with simple activities that relax them and alert them that it’s time to calm down and go to bed soon.
• Drawing the shades and turning on soft lighting in their room can also trigger this wind-down time.
• And suppose it’s terrible, and sundowning behavior occurs daily to the point where no one is getting any sleep. In that case, a prescription for something to relax them and aid them in sleeping in the evening can be critical to ensuring they get the rest they need.

Uncooperative

A recurring theme with dementia patients is their inability to cooperate when it comes to getting them to do things like eat, do an activity, get along with others, or just general daily tasks. This uncooperativeness can often result from them being scared, anxious, or just feeling out of control which is understandable as the disease takes over for them, and they lose that cognitive ability. Simply asking them to do something like getting dressed or brush their teeth will not get a proper response, most likely, so there are some things caregivers can do to help alleviate this and make it easier.

• Don’t rush them. If a task is coming up, like ensuring they get their dinner or head to an activity, it’s important to start the process sooner than later and go slow and walk them through the steps to accomplish the tasks.
• Always speak in a slow, calm manner that gives them the time to listen, process, and act. They will definitely be more uncooperative if they are feeling pressured or rushed into the task.
• Breaking things into easy-to-follow steps while thoroughly explaining each stage can help support your loved one in the process as they hear the instructions and can respond on their own time.

Agitation

Agitation is kind of an overarching term for someone with dementia as it encapsulates several behaviors from physical aggression to being over-tired and irritable. In general, people with dementia are likely going to feel agitated at one point or another, whether it be mild agitation or severe. Much like the rest of these behaviors, dementia patients can feel agitated after being triggered in one way or another.

They often feel scared, overwhelmed, and out of control, and when any of those feelings is exacerbated, it can trigger some agitated behavior. Keeping a loved one or patient calm at this moment is key to helping diffuse the behavior and navigate their frenzied mindset without it processing to something worse. Here are some tips for keeping someone calm.

• Keep a routine so there are never any surprises or sudden reasons that could agitate the person with dementia.
• Keep their room clean and organized, with necessary items easily accessible to them.
• Limit drinks and foods that can increase their heart rate and anxiety. (caffeine, sugar, junk food)
• Support their independence to do things as much as possible. They want to feel they are in control.
• Acknowledge their feelings of anger and agitation rather than ignore them or combat them.
• You may be able to redirect their attention to something else so that they forget the triggering event that caused their upset. Snacks, games, and tv can help calm them down.
• Always speak in a calm, reassuring voice. Never respond with anger—that will make things worse.
• Fill their room with things that remind them of their lives, such as family photos, nostalgic items, and more. Mention those items at the moment they start to feel agitated.

Sexually Inappropriate Behavior

These behavioral and personality changes due to the dementia disease, social queues, and moral compasses also fall away as the disease progresses. A person with dementia may not know what is right or wrong and can act out in very inappropriate ways, including sexually motivated actions. What we mean by sexually inappropriate behavior is displaying lewd behavior like masturbating or getting naked in public. They may also make sexually explicit remarks to people or even take it one step further and make sexual demands or inappropriate touching to others.

Even though we all know this to be the disease talking and taking over their social behaviors, it still makes for a very awkward situation for everyone. For these scenarios, it is critical to have an action plan of what to do, say, and how to prevent this behavior from happening again. This behavior can sometimes lead to removal from a memory care community, so approaching it the right way is critical. These behaviors are, like the rest, often triggered by something, and if you can find out what that is and remedy it, it can help rid them of these lewd behaviors beyond their control.

Verbal Outbursts

All of the above behaviors can culminate into aggressive, loud, and inappropriate verbal outbursts. People with dementia may curse at caregivers, family members, or even strangers. They may also threaten to harm someone or themselves, but these verbal acts of aggression have underlying sources such as fear, unexpected changes, feeling uncomfortable, etc. And yelling or shouting obscenities is how they are expressing those feelings. It is entirely normal but again, knowing how to calmly diffuse the situation and avoid triggers can help them maintain a calm environment.

Shadowing

And lastly, people with dementia may end up being little copycats. Shadowing is when a person with dementia imitates or follows someone, aka shadows them. This can coincide with sundowning behavior and occur later in the day after they’ve been overstimulated or overtired. They may be repeating back everything their caretaker or family member does, making it very difficult to get any instructions across and get them to stop.  To handle someone who is shadowing, distraction is vital. Offer a task for them to do and redirect their energy towards a card game or the tv, or something else that can calmly diffuse their shadowing behavior and funnel that energy elsewhere.

Dealing With Direct Symptoms Of Dementia

Dementia and other medical conditions such as strokes, Parkinson’s disease, and head trauma can cause neurological problems that come with specific symptoms such as incontinence and perseveration (repetitive speech). These symptoms are often directly correlated to patients with dementia and knowing how to handle them properly is key to managing the disease.

Incontinence

As dementia progresses, patients can begin to lose control over their bladder or bowels. These once subconscious feelings now take a lot of work to prevent having accidents. However, there are a lot of things one can do to assist someone with dementia with going to the bathroom.

• Remind the person regularly that they should go to the bathroom. They may need assistance, and it can be good to bring them to the bathroom every 2 hours or so.
• Don’t give them any liquids late in the day to avoid accidents during the night.
• People with dementia may simply not remember where the bathroom is, so by marking it with clear signs that include pictures they can see and immediately know which door is the bathroom.
• Purchase clothing that is easy to get on and off, like pants with elastic waistbands vs. buttons, so there is no struggle. And also, make sure the clothes are stain-resistant and easy to wash.
• Keep a close eye on their fluid intake with a schedule so that they can remain hydrated but also manage when they go to the bathroom.
• Purchase some incontinence pads or medication to help alleviate the worry of unexpected accidents, especially if they may not be near a bathroom for a certain amount of time.

Repetitive Speech

Language is one of the hardest-hit areas of dementia. People dealing with dementia will often lose their ability to speak fluently and sometimes begin to repeat words, questions, or statements over and over again. Like many symptoms of dementia, repetitive speech or activity can be triggered by stress, anxiety, or other external factors. So working to alleviate any stress or worry can help to combat this behavior. As a patient with dementia is repeating words, it can be difficult and frustrating to the caregiver who is wanting to explain something or get them to do something, so these tips can help them handle this situation.

• As with a lot of difficult dementia behaviors, approach the situation with compassion, reassurance, and calm comfort. Speak softly, directly, and offer a gentle touch to calm them down and re-center them.
• Distraction can do wonders: try using a snack or going for a walk to distract them.
• Don’t bring a ton of attention to the repetitive speech. Don’t tell them they keep repeating themselves because they may not be aware of it, and that will only escalate their anxiety levels.
• Putting reminders around their room for when meals are or if someone is visiting them can help prepare them for events and prevent any surprises that can trigger anxiety and fear.
• Know how to read their repetitive behavior. If it occurs every day before lunch, it could mean they’re hungry. If they also pace around the room as they do it, maybe they need to use the bathroom or are wanting to go outside.

Paranoia

Paranoia is another common symptom associated with progressing dementia. It’s important to know that this behavior of being suspicious or accusatory to loved ones is just the disease and shouldn’t be taken personally. Paranoia is directly tied to the anxiety and fear that is associated with dementia and requires the same prevention techniques and calm demeanor as the more combative behaviors. Paranoid behaviors might include thinking people stole money or items from them, looking for something that isn’t there, or being suspicious of caretakers or even family members.

• To avoid them thinking you stole their money, keep some change or dollars in their pocket that they can keep track of and feel comfortable knowing it’s in their possession.
• Help them look for the “missing object,” then transition into something else and distract them from the distress of having something “stolen.”
• Acknowledge their feelings and reassure them.

Hallucinations

In addition to paranoia and delusional thoughts, dementia patients can actually have hallucinations and visions. Their perception of reality and being can become skewed the more the disease progresses. It’s important that caretakers and loved ones know how to deescalate the situation. Some ways to prevent hallucinations can be to keep rooms well-lit and de-cluttered and calmly explain any scary noises or movement they see is just people walking by or planes flying overhead. Sometimes hallucinations are pretty harmless and do not cause the person any distress, in fact, sometimes the hallucinations seem to calm them. Consult with the proper care team or medical professionals specializing in their dementia to help determine the proper treatment or medication for your loved one to help cope and manage hallucinations.

Managing Daily Tasks & Responsibilities

Unfortunately, along with all of the troubling behavior we’ve listed so far, dementia will also progress to a point where they can no longer manage daily tasks and will need assistance with everything from eating nutritious meals to getting dressed in the morning. Here’s how you can help people with dementia manage day-to-day self-care and health and simultaneously promote a sense of control and independence.

Eating & Drinking

Nutrition and hydration are very important for people living with dementia. However, getting them to eat and drink takes precedence over that because undereating and drinking can contribute to even more complications such as urinary tract infections, weight loss, and fatigue. Some people with dementia even forget that they need to eat or drink, so it’s vital for caretakers to take steps to ensure proper nutrition and food consumption.

• Meals and snacks must be a part of a daily routine, and doing it at the same time every day can much more easily get dementia patients to want to eat and also expect to eat without any surprises.
• Keep distractions to a minimum at mealtime. Instead, create a calm atmosphere free of loud noises, TVs, and busy areas. Make it an event that makes them want to come to sit down and eat a meal.
• Before these people were dealing with the effects of dementia, mealtime was probably a very social thing for them, so sitting with other individuals or even the caretakers joining the meal can help make it a nice nostalgic time. Not to mention they may see a loved one eating and mimic the behavior as it reminds them to take bites as well.
• Pay attention to special dietary needs or sensory needs. People with dementia may often become sensitive to certain textures or even have trouble chewing. Keeping a menu limited to things they can easily consume can help a lot.
• In addition to that, voluntary movements like chewing and swallowing can become difficult in advanced patients. A simple gesture to remind them to chew and swallow can help guide them through the meal and help prevent them from storing food in their cheeks or risk choking.
• Be mindful of their weight. Keep a close eye on snacks and how much they are actually consuming in order to maintain a healthy weight. Be sure to report any significant weight gain or loss to their medical team. 

Bathing

Hygiene is another daily habit that can quickly decline as dementia progresses. It’s maybe one of the more difficult ones to manage, but it obviously must be done, and there are some helpful ways to ensure people with dementia are getting clean and maintaining proper hygiene, even if they can’t do it themselves.

• Install safety measures in the shower or bathtub such as a walk-in tub door, shower bench, handheld showerhead, grab rails and anti-slip mats, and a faucet that doesn’t get too hot or too cold.
• Be prepared to give just a sponge/towel bath if a regular shower or bath gets them upset. You can even utilize dry shampoo if hair washing becomes an issue.
• Get them a cozy robe and slippers for when they exit the shower or bathtub. Being nude without a covering after a shower can make them feel very vulnerable.
• Use their favorite scents, or non-scents if they are sensitive, that remind them of their life when they used to get ready on their own each day.

Dressing

As people age, with or without dementia, dressing can become a difficult chore. As they lose flexibility and dexterity, doing buttons and just pulling up pants can become very difficult. For patients with dementia, one of the best ways to help alleviate any stress with getting dressed and changing is to purchase very loose, comfortable clothing that is uncomplicated and easy to get in and out of. Not only does the physical act of getting dressed become difficult, but dementia can also bring sensory issues in the elderly. Tight-fitting clothing or items with itchy or strange textures can make them uncomfortable and trigger troubling behavior. Keep it simple, light, and easy.

The staff at Sunflower Communities knows quite well how to communicate with people with dementia in a way that may help them transition and finally find some peace in their daily lives. We understand the struggles that come with all stages of dementia, and communication being a big one. We can help facilitate the tools to help caregivers and family members navigate this new landscape. To get started with memory care built just for you and your loved ones, reach out to us today.