Caring for dementia requires patience, knowledge, and compassion. During the early stages, symptoms will be mild enough for patients to live on their own. However, as it progresses, they will gradually require more help. There will be physical and emotional challenges but understanding them will make it easier to find practical solutions. No two people experience dementia exactly the same way. Nevertheless, drawing on the knowledge of previous caregivers will prepare you to manage symptoms and support your loved one.
Dementia is not a single disease, but a cluster of disorders that damage a person’s memory, language, and reasoning, altering their cognitive abilities, until they can no longer care for themselves.
A small percentage of cases are caused by other diseases, such as Parkinson’s, Huntington’s, and Creutzfeldt-Jakob. Repetitive brain trauma may lead to dementia as well, though it takes years for symptoms to emerge.
When caring for dementia, early detection is critical. It allows patients to plan their future, arrange their finances, designate power of attorney, and explain the health decisions they want taken on their behalf. Most of all, it gives them a chance to connect with friends and family before being overtaken by the disease.
Early detection also opens treatment options. While there is no cure for Alzheimer’s, medication can slow its progress. Additionally, lifestyle changes may reduce the severity of symptoms.
Memory loss is the most noticeable symptom of dementia, but it affects almost every part of the brain. Symptoms appear in clusters. If two or more are present, the patient should seek help straightaway.
It is important to speak up when you notice symptoms in someone close to you. Persons with dementia often know something is wrong but are reluctant to seek help. Many times, knowing another person shares their concerns gives them the courage to see a physician.
Diagnosing dementia takes a long time. Patients will probably have to visit several specialists, including a neurologist, psychiatrist, psychologist, and geriatrician (a doctor who specializes in treating older adults). Their memory, language and problems solving skills will be tested. They may also be given a brain scan, psychiatric evaluation, and blood tests. What’s more, they will be subjected to several rounds of questions.
Caregivers should accompany loved ones on these visits. Not only for moral support, but to learn as much as they can about the patient’s condition. However, it is not your job to speak to the doctor. Let the patient do the talking. Only chime in if they do not know how to answer or to learn details about the tests they are going to receive. For example:
Most importantly, take notes. You are going to be given a lot of information you will need to consult later. Also, be sure to ask the doctors to jot down any instructions for you or your loved one. Lastly, do not accept documents written in medical jargon. Insist everything they give you be spelled out in plain English.
Once a patient has been diagnosed, there are three important documents they need to complete: HIPPA Release, Power of Attorney, and a Living Will. The release gives caregivers access to the patient’s health information. Power of attorney grants permission to make decisions on their behalf. And the last lays out their wishes regarding natural death.
In time, trips to the doctor will require more preparation. Tests, scans, and blood draws can leave patients anxious, confused, and combative. But by planning ahead, caregivers can minimize difficulties and put each visit to good use. Tips to keep in mind:
Caring for dementia is easiest when the patient feels in control. Let them talk and position yourself as their partner. Include them in discussions with the doctor. They can tell when they are being ignored or condescended, and it will make them upset.
Activity and self-management are the best ways of caring for dementia after a diagnosis. For the most part, patients will be capable of living alone and looking after themselves. Caregivers should check in and intervene only when the patient is tired or confused. Ask what activities they feel comfortable performing on their own and what kind of assistance they need. During this phase, your goal should be to work with patients to develop better habits and maintain their quality of life.
Planning out the day in advance eases the patient’s mental load. Schedules act as memory aids, prompting seniors when they forget what to do. Creating patterns also gives their days a familiar flow, which makes them less anxious. Some easy ways to help.
Despite their condition, people with dementia want to remain independent as possible. Caregivers should know that while their loved one understands they need assistance, they do not want to surrender their autonomy. Gentle but persistent encouragement will produce more satisfying outcomes and help them function better day-to-day.
Dementia patients benefit from being involved with friends, family, and community every bit as much as they did before. It undeniably makes them happier, and there is evidence socializing delays the onset of serious symptoms. Consequently, every member of the care team should be thinking of ways to keep them busy. For example:
Avoid downtime whenever you can. Patients do best when they remain active throughout the day. Above all, make sure they are occupied with something meaningful. Whatever they do needs to be fun, beneficial, or poignant.
No one can be available 24 hours a day. Caring for dementia requires a team. If family and friends are not available, consider hiring a home care service to come lend a hand. They can prepare meals, perform housework, and assist with tasks the patient can no longer perform on their own. A good caregiver will know when to step in and when to let the patient take care of themselves. Whatever home care service you hire, make sure they are kept up to date on the patient’s condition. That way, as things change, they know how to adjust their approach.
With dementia, changes in balance, judgement, and perception make the home environment increasingly dangerous. However, a few simple precautions will eliminate most of the risks and make it safe for loved ones to continue living on their own or with a caregiver.
In addition to these general precautions, some rooms have specific challenges that need to be addressed.
Firstly, start by adding a mat or safety strips in the shower, as well as around the sink, tub, and toilet – anyplace that gets wet. Secondly, add grab bars or a shower chair. A handheld shower head and long handled sponges might also be useful. Thirdly, put a foam cover over the faucet, to protect their head in case of a fall. Finally, consider installing grab rails by the toilet and putting in a raised toilet seat. In the later stages of the disease, you will need to lock up appliances and medication as well. It may also be a good idea to lower the temperature on the water heater.
Early in the disease, patients will be able to cook for themselves. However, a few adjustments will make it easier. For instance, grip extensions on the stove and kettle tippers to pour hot water. Similarly, a tray trolley to carry food and drinks. Most important might be a stove guard, which automatically shuts burners off if they have been left unattended. In the same way, timers can be used to remind patients when food is ready. Caregivers might also want to think about buying a perching stool, so patients with balance problems can sit while cooking and washing up.
Eventually, however, you will need to take further precautions. Put childproof locks on drawers and cupboards to prevent access to knives, scissors, matches, lighters, cleaning supplies, alcohol, and plastic bags. Then, install safety knobs on the stove, so patients cannot activate it. Lastly, throw away any food-shaped objects, like magnets. They might get eaten accidentally.
When the time comes, lock away all the soap and detergent. Use latches to keep patients from tampering with the washer or dryer. If they keep fiddling with the control knobs, it might be wise to remove them.
Because it is commonly used to store tools, sharp objects, and heavy machinery, garages are particularly hazardous. Lock away tools, equipment, and dangerous materials, such as:
In addition, remove or secure any scooters, bicycles, and vehicles. Leave the entrance closed and locked at all times. Dementia patients are not particularly noisy. They could wander in while you are working and get into an accident before you realize they are in danger.
To begin with, make sure it is well-lit and has a night light, in case the patient has to get up to use the bathroom. Do not install space heaters because they are a burn and fire hazard. Heating pads or electric blankets are safe, but only if the controls are kept out of reach. Finally, add a baby monitor so you know if they need help.
In the event that something happens, create a list of emergency contact numbers: police, fire, poison control, hospital, pharmacy, and the patient’s primary care physician. For quick advice, include the Alzheimer’s Association Helpline. Share the list with every caregiver who comes into the home and ask them to program it into their smartphone.
Finally, keep a first aid kit on hand. It should include the following items:
Additional supplies might be needed if the patient has other health conditions; for instance, a blood sugar reader if they are diabetic or an EpiPen to treat severe allergies.
Because of dementia’s effects on language, caregivers need to pay special attention to how they talk. This requires not only patience but understanding. The person will not always be able to express themselves clearly and will frequently lose their train of thought. Please understand they find this just as frustrating as you do.
Dementia patients will occasionally have a hard time finding the right words. They may substitute similar sounding words, “eight” instead of “plate” or “hat” instead of “cat,” for example. Or they may forget the word altogether. Regardless, it is best not to interrupt or help. Give them time to think of the right term or phrase on their own.
It will also be hard to remember what they have told you and what you have told them. Questions may be repeated several times. Conversations might peter out because they cannot follow your line of reasoning. In similar fashion, they might forget the subject of a conversation and trail off. To support them, try:
Resist the urge to prompt their memory (e.g., “Do you remember?”). When referring to objects and people, use proper nouns to avoid confusion. Say “Pass me the blue cup” rather than “Pass me that.” Tell them “Sally went to the store” instead of “She went to the store.”
Misconceptions start growing larger. Instead of forgetting the time, they might forget where they are or what year it is. Correcting them will only make them upset, so roll with it when it happens.
If you must explain something, use as few words as you can. Ideas have to be simple to be understood. Likewise, break tasks down as far as possible. Wait until they have completed each step before explaining the next.
By now, language skills will have deteriorated so far that sometimes they will not make sense. Sentences will be short and broken, with many gaps. When they search for words, they might not find them. This can be frustrating, but they are trying to communicate, so be patient. Useful strategies include:
As time goes on, they will talk less and ask fewer questions. Mental stimulation is still important, even at this stage, so draw them out whenever you can. Encourage them by holding their hand or patting their shoulder.
The further they decline, the harder it will be for them to understand other points of view. With that in mind, do not try and reason with them; it will only make them angrier. Instead, agree, then wait for them to calm down before proceeding with your planned activity. By the same token, do not contradict them or state they cannot do something. Let them do as much as they can and step in if they need help. When giving instructions, showing them what to do is better than telling them.
Dementia does not mean someone has to give up their driving privileges right away. They will still be safe on the road, at least for a while. However, caregivers will eventually need to devise travel plans. Driving can be stressful, but a few simple maneuvers will keep everyone safe and calm.
Without a doubt, the biggest danger is that they will take your keys and drive off. For everyone’s safety, it is best to hide your car keys until you are ready to go.
Short term memory loss and inability to recognize places leads to wandering, one of the most common and distressing symptoms of dementia. Roughly six out of 10 dementia patients wander at some point, even in the early stages. It is triggered by several factors, including:
There is no way to prevent wandering entirely, but caregivers can take steps to reduce the risk.
If a patient wanders away, do not panic. First, begin by searching the immediate area. Wanderers are generally found within 1.5 miles of the place they left. They tend to move in patterns, following the direction of their dominant hand. By and large, they are drawn to parks and green spaces. Look for them in locations they have visited before. However, if you have not found them after 15 minutes, call the police.
To lessen the danger, pay attention to basic needs: food, water, sleep, toileting, etc. When patients are comfortable, they are less likely to wander. Activities and exercise are great for curing restlessness, so keep them active. Take them on walks or get them to help with chores. Many times, you can predict when they are at risk. Restless feelings tend to peak around late afternoon, so watch them closely.
Neglect of basic hygiene is a common side effect of dementia. Along with names and faces, patients forget how to wash and clean themselves. For many, this development is unexpected, but it is one of the signs the disease has progressed to an advanced stage.
Dementia interferes with people’s ability to find the bathroom and control their bowels. First, mark the bathroom with a sign (TOILET) or a picture, or both. Second, watch for warning signs. If you catch patients fidgeting, pacing, or tugging at their clothing, it could be a sign they have to go.
Eventually, you will want to make toileting a routine rather than waiting for them to use it on their own. Walk them to the bathroom every 2-3 hours. Depending on circumstances, they may need your help pulling down their pants and sitting. However, you do not need to stay in the bathroom while they go. Wait outside and check back every few minutes until they are done. Hand them toilet paper if they forget. Urinary tract infections are common in people with dementia, so make sure they are properly clean. It is not unusual for them to walk away while their pants are down, so be aware. Finally, clothing that is easy to remove will make the process simpler.
If the patient is starting to have accidents, use pull up underwear before switching to adult diapers; it is less embarrassing. Also make note of the time the accident happened, so you can create a more effective bathroom schedule.
Dementia makes it difficult to remember procedures. When it comes to bathing, patients might recognize soap, but not what they are supposed to do with it. Therefore, you will have to guide them through the process.
Start by setting a bathing schedule. Two or three times a week is fine, unless they are having bathroom accidents, in which case it might have to be every day. Stick as close to their old bathing time as possible.
To begin, gather your supplies, prepare the water, and position the shower bench. Next, invite them in and explain what will happen. You will probably have to talk them through each stage as you go. Nevertheless, position yourself as their helper, not their boss. It makes things go smoother.
Once they are seated, hand them a sponge or washcloth. Even if they cannot use it, it makes them feel like part of the process. To minimize embarrassment, place a towel over their lap or across their chest and reach underneath it in order to scrub. When the time comes, place a washcloth over their face to prevent shampoo running into their eyes. In the event they do not like getting wet, start with their feet and work your way up. Lastly, talk, sing, whistle, or ask questions to put them at ease.
When dealing with dental care and dementia, prevention is key. Regular brushing, flossing, and cleanings will cut down on problems later, when going to the dentist is bound to make patients confused and frightened. For that reason, major procedures should be taken care of as soon as possible. Search around for a dentist who understands the patient’s condition. Then schedule checkups every 4-6 months until the patient can no longer tolerate them.
In the same way they forgot how to bathe, patients will forget how to brush and floss. Early on, caregivers can get patients to do it themselves by showing them the process. First, get everything ready before bringing them into the bathroom. Then ask them to watch as you explain step-by-step how to brush, starting by removing the cap on the toothpaste. Encourage them (“That’s it. You’re doing great!”). If they are having trouble, gently guide their hand. Instead of flossing, use a proxabrush to clean between their teeth. Remember, gums can be sensitive, so experiment with different brush types. Soft bristles generally work better. Keep an eye out for wincing, which might indicate a cavity or gum sore.
Later, patients will lose the ability to follow you. They might not even care whether their teeth are clean anymore. At any rate, you will have to take over brushing and flossing. Sit them down in a straight-backed chair while you stand behind. Next, cradle their head with one hand and brush their teeth with the other, using a small amount of toothpaste. Go slow and be gentle.
Dementia causes patients to wake up constantly during the night. Disrupted sleep is not only bad for their health, but it also leads to a range of problem behaviors. Patients cannot tell where they are in the dark, so they panic. This distress is compounded the next day when their tired minds become overstressed (Read more about late afternoon behavior).
Notwithstanding the mental difficulties, there are physical ones as well. If they get up to use the bathroom, there is a chance they might trip and hurt themselves. But before seeking help through medication, first try and solve the problem by creating a relaxed and comfortable sleeping environment.
The biggest obstacle to sleep is pain. If they are tossing and turning, check to make sure they are not suffering from an infection or injury.
Make sure there is a night light in the room. Light strips along the floor may help as well, especially if they illuminate the way to the bathroom. This not only prevents patients from tripping but helps them remain calm when they wake up. If after 15-20 minutes they have not fallen asleep again, get them up. Lying there will weaken the mental link between bed and sleep. Instead, try reading to them, listening to music, playing a simple game, or having a snack. No TV or computer screens though; the light disrupts their internal clock. If they are agitated, sitting and talking generally soothes them. Brushing their hair or rubbing their back might help as well.
Consult a doctor. They may be able to detect a problem you are not aware of. Conversely, they might be able to prescribe something to help get them through the night.
People with dementia have trouble making decisions. The more choices they have, the more overwhelming it becomes. To help, lay out two outfits and ask which they prefer. Keep the choices simple, such as a red shirt or blue shirt. Hold each one up as you ask.
In many cases, they will be able to dress themselves if you hand them their clothes in the order they need to put them on: underwear, socks, pants, etc. Talk them through the process, guiding their arms and legs if you have to. Concentrate on comfortable clothing that can be pulled on with minimal fuss. The less complicated it is, the faster it will go.
Do not be concerned about mismatched clothing. Do your best to make them look nice, but what matters is they are happy. By the same token, if there is an outfit they insist on wearing, buy extra. Only put your foot down if the clothes they pick are not suitable for the weather. Even then, be flexible. You can always take off a layer or bring a sweater or jacket.
Malnutrition is one of the side effects of memory loss. People not only lose the ability to cook for themselves, but also forget when they last ate. In latter stages, they may neglect to chew and swallow their food.
As has been noted, the best way of caring for dementia is to create routines. Serve meals at the same time each day and serve a variety of food. Make sure it has different colors and textures. Also, use plain dishes. Nothing with patterns. You want the food to stand out against the plate. Do not experiment with new recipes either. Prepare familiar foods in familiar ways.
Always eat with the patient, so they can follow your example, but not someplace noisy. You do not want them to become distracted or upset. Keep the table bare as well. No condiments, pepper shakers, or centerpieces – anything that could draw attention away from the food in front of them.
Serve one course at a time. Too many choices and they will not know where to start. Place only the utensils they need for each dish on the table. Conversely, if it is hard for them to use forks, knives, and spoons, let them eat with their hands. Additionally, use shallow bowls to prevent them from pushing food off their plate.
With dementia, meals can take a long time, but it is important you stay with them until they finish. Just because patients are putting food in their mouth, it does not mean they are eating. They might take a bite but forget to chew. If this happens, remind them. Demonstrate chewing. If that does not work, press softly on the jaw to get them started. Small bites and moistened food will ease the process.
Offer them plenty of liquids with every meal as well. Dementia patients sometimes do not respond to sensations of thirst and need help staying hydrated.
Late afternoon is difficult for dementia patients. Agitation, confusion, and anxiety become more pronounced. These feelings sometimes grow so intense patients push, strike, or curse at the people around them. Fortunately, not everyone experiences this type of behavior. It is primarily seen in Alzheimer’s patients, affecting one out of every five.
At the moment, physicians cannot explain why late afternoon is so triggering. They suspect dementia disrupts the person’s circadian rhythm (internal clock), which leads to problems late in the day, when they get tired. Because it occurs most frequently around sunset, these symptoms are known as sundown syndrome or “sundowning.”
On the positive side, there are steps you can take to prevent or mitigate this behavior. Learn more by reading our practical guide to sundown syndrome.
Certain types of dementia cause people to see, hear, or sense things that are not real. Hallucinations are most common in Lewy Body and Parkinson’s Dementia, but Alzheimer’s can trigger them as well. Of course, several other disorders can trigger them as well, such as kidney or bladder infections. Pain, alcohol, dehydration, or medication may also be responsible. With this in mind, the first thing to do when a patient starts hallucinating is take them to a doctor. Once physical causes have been ruled out, you can focus on coping strategies.
Hallucinations are brought on by a number of different factors. For instance, confusion, paranoia, and stress caused by excessive noise, unfamiliar faces, or new surroundings. Shadows, poor lighting, and darkness could cause patients to misperceive objects and spaces. Seeing patterns on the wall or reflections in mirrors and windows might also trigger delusions.
Not all hallucinations are troubling. If the patient is not upset by what they are seeing or hearing, then nothing has to be done. Talk to them, ask them to describe what they are seeing, but otherwise let it be.
On the other hand, if the patient is upset, do not attempt to persuade them what they are experiencing is not real. Instead say:
Next, try and shift their focus. Suggest moving to another room, having something to eat, or going for a walk. You could also ask them to help with a chore such as sorting spoons or unraveling wool. Likewise, if they have a favorite book or activity, bring it out.
Afterwards, once the episode has passed, consider altering the environment. Brighten the room. Remove mirrors, paintings, or patterned tablecloths. Lower the shades on the windows. Check for noises from other parts of the house; perhaps the TV or air conditioner is too loud.
If that does not work, medication may be a solution. Consult a physician and see if there are any pharmaceuticals they recommend. But be warned: these types of drugs can have significant side effects, so consider them a last resort.
Memory loss creates a great deal of anxiety. As their condition worsens, caregivers become the patient’s primary source of comfort, sometimes to the point where they cannot stand to be away from them for more than a few minutes. This leads to shadowing, a type of behavior where patients follow their caregivers from room to room.
Shadowing can be irritating. It robs caregivers of privacy. They complain they are being smothered and become desperate for time alone. As always, the first thing to do is remain calm. Understand that to the patient, the world is strange and confusing. Caregivers are reliable, one of the few solid pillars they can cling to. In view of this, the best way to respond is to keep them relaxed and engaged with meaningful activity.
Friends and family are a big help in these situations. They can sit with the patient or take them out for a few hours. Time alone lets caregivers recharge, so they can provide better care in the future.
Memory loss is not the only reason patients repeat the same question or behavior. Sometimes it is because they are afraid, depressed, or bored. They might be seeking reassurance as well, asking questions to confirm their memory is working.
Answering the same questions over and over can be exhausting. But knowing the reason can help you cope. For instance:
Above all, be patient. Speak in a calm and reassuring manner. Remember, it is likely they do not realize they have asked the same question already. They are looking for comfort, so provide it the best way you can.
Caring for dementia is taxing. The complex demands put both physical and mental strain on caregivers, which only grows as symptoms grow more severe. Excessive stress not only takes a toll on your health, but also affects the quality of your care. Most patients can sense when their caregiver is on edge, which subsequently increases the likelihood of problem behavior. Safeguarding your loved one requires being honest about your limits. Everyone is susceptible to caregiver fatigue. If your duties are preventing you from maintaining your well-being, an assisted living home may be the best option.
Caring for dementia grows even more challenging in its final stages. Eventually, patients will not be able to sit up, walk, or eat without assistance. Caregivers need to consider whether they have the physical strength necessary to look after someone in that state.
Patients in advance stages of dementia also need special equipment: ramps, wheelchairs, stair lifts, hospital beds, etc. This is a significant financial burden, but there are hidden costs too. According to a report by the AARP, caregivers are more likely to stop saving, go into debt, borrow money, and fall behind on their bills. Many of them end up looking for extra work or put off retirement in order to keep up with the expense. An assisted living home helps reduce some of these troubles.
An assisted living home gives families a chance to stay connected to their loved one while providing for their health. Our staff lives on the premises, which allows us to give patients close, personal attention every hour of the day. We understand their needs and adjust our schedule to suit their preferences. With a low care ratio of 3 to 1, we look after each resident like they were family.
Parentis Health’s Verona Court facilities offers a warm and intimate environment, with round-the-clock support. If you have a loved one suffering from dementia, it is time you learned about the benefits of our unique approach.