Dementia: The Challenges of Memory Loss

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“Dementia” is a term used to describe more than 70 conditions that result in loss of memory and logical thinking. Alzheimer’s disease is the most common form. Vascular dementia is the next most common (it is most often caused by a stroke or by a series of small strokes). Parkinson’s disease, Lewy Body dementia, or long-term alcohol abuse can also bring on memory problems. Some forms of dementia are temporary or treatable. Most are not. And most are progressive, meaning they get worse over time.

Memory loss affects not only the person who has it, but also family members. People with dementia usually end up needing lots of assistance. In the later stages, they cannot live on their own.

Below are articles to help you get a better sense of dementia symptoms and what you can do to make it easier on everyone involved.

What is dementia?

treeslosingmemoryleaves_fotolia_80738791-700x400“Dementia” is the word used to describe loss of memory and logical thought. The ability to plan, remember, and make well-reasoned decisions is essential to living independently. More than half of elders 85 and older have a condition that results in dementia symptoms.

Depending on the cause, dementia symptoms can include

  • loss of ability to remember new information or recent events. Your family member may ask the same question over and over. He or she may repeat the same story 10 minutes after telling it.
  • confusion and loss of logical thinking. Inability to remember also affects the reasoning part of the brain. This is where we track that “a” leads to “b” which leads to “c.” For instance, dealing with numbers and calculations, such as adding and subtracting, frequently becomes a problem with dementia. This type of muddy thinking is also common with depression.
  • bad judgment and loss of wisdom or “common sense.” Weighing the pros and cons of a situation is mentally taxing. Your family member may have trouble zeroing in on a decision. For instance, ordering at a restaurant may become frustrating. You may find that your parent purchases unnecessary or unusual goods. Poor judgment may also make your family member vulnerable to scams and con artists.
  • Difficulty with multistep activities. Complex activities are especially hard when you can’t remember what you’ve just done. Early signs of dementia may include problems making a meal or balancing the checkbook.
  • Getting lost or disoriented. Your relative may get lost in familiar places. He or she may not be able to follow directions easily.
  • Reduced verbal skills. Difficulty finding words is a sign of dementia. We all have trouble with this now and then. But persons with dementia frequently substitute odd or unrelated words when they can’t find the one they want.
  • Loss of interest in usual activities/hobbies. This is also a sign of depression. Depression and memory loss frequently occur together. (It’s depressing to be losing your mental abilities!) And the muddy thinking of depression, especially in an older adult, can seem at first glance to be dementia.

Dementia is a collection of symptoms. It is not a diagnosis. In fact, there are many causes of dementia. This is one reason it is important to have your family member evaluated. You want to identify which condition is at the root of the memory problem.

Some dementias can be treated and cured. The most common causes of temporary dementias include

  • drug reactions. Confused thinking may be a side effect of medication. Or it may result from a combination of drugs. Even over-the-counter and herbal remedies can cloud one’s ability to think logically.
  • medical conditions. Diseases of the kidneys or liver, for instance, can cause memory problems. People with especially high or low thyroid levels show symptoms of dementia. As the medical conditions are treated and cured, the dementia also goes away.
  • infection. A high fever can cause confusion. This is especially true of infections in the brain. Cure the infection and you’ve eliminated the dementia.
  • nutritional deficiency or dehydration. Lack of B vitamins, particularly B12 and thiamin, can result in confused thinking. So can insufficient fluid intake.
  • long-standing alcoholism. This form of dementia is treatable if caught early. Once the damage is done, however, the dementia symptoms can continue even if the person quits drinking altogether.
  • emotional distress. Anxiety and depression can affect thinking as well as mood. Fortunately, these conditions can be treated.

Other dementias are not curable. But the worsening of the symptoms can be slowed down with medication. For instance, there are medications that can help with Alzheimer’s disease. Drugs that lower blood pressure and prevent blood clots can reduce the frequency of strokes, which are the cause of vascular dementia. Some people have more than one memory loss condition. As an example, it is not unusual for older adults to have both Alzheimer’s disease and vascular dementia.

If your loved one’s doctor reports “symptoms of dementia,” request further testing and a full diagnosis. Ideally, get a referral to a neurologist. A thorough work up includes special tests of thinking, blood tests, and a brain scan (CT or MRI).

Once you know the cause, you can then take action to cure the condition or at least slow down the decline in memory. The sooner you find out, the better.

Has your loved one been given a formal diagnosis? If not, which doctor could you talk with to ask for a full assessment?
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How dementia affects family life

If your family member has memory loss, he or she is at the least, confused. The inability to remember and track what’s going on is very confusing. And it can be scary. Your relative may become angry or fearful. His or her personality may change. And so might behaviors. For instance, people with middle stage dementia frequently lose their social inhibitions. As a result, they lose their manners. This can lead to actions that are embarrassing and very confusing for families too.

Research indicates that caring for a person with memory loss is extremely stressful. A diagnosis of dementia, more than other conditions, takes its toll on the family. Dementia caregivers are much more likely to be depressed. They also are more likely than other caregivers to develop significant health problems. If your relative has dementia, you need to be extra careful to mind your own health. And you need to develop strategies for coping with stress.

More than with other conditions, your role will change over the course of the disease. Although working together as a team is optimal in elder care, it is not as easy in the case of dementia. In the earlier stages, it is important that your relative be involved in decision making. As the disease progresses, however, he or she will lose the ability to make reasoned decisions. Determining when and how to phase out responsibility for decision making can be challenging. A care manager can give you a sense of your family member’s level of dementia. He or she can help walk you through the diagnosis process. A care manager can also help you find resources now and to plan for the future.

Even if your relative’s dementia is not curable, there are things you can do to make daily life more pleasant for all of you. The articles below outline the general stages of dementia, with tips pertinent to each one. It’s also very important that you reach out and get help. Caring for someone with dementia can be physically and emotionally taxing. You need patience, strength, and regular breaks from caregiving.

Remember, you don’t have to do this alone. At Concordia Visiting Nurses, we understand dementia. Give us a call at 724-352-6200 or 724-869-8669; or toll-free 1-877-352-6200 or 1-866-869-8669. We’d be happy to help with resources for you and the person you care for.

Who can you talk to about your needs as a family caregiver?
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Early stage of dementia

Many older adults worry about dementia. The aging process normally includes some forgetfulness, but dementia is quite different.

Normal forgetfulness involves

  • reduced ability to multitask. The aging brain simply needs to slow down and do one thing at a time. It may take longer to do things, but they do get done.
  • slower recall. An older adult might not remember a word or event right away, but will eventually. It might take a few minutes, or hours, but the memory will surface.

Dementia is more disorienting. It involves the inability to make new memories. It’s like a blank slate. The memory just isn’t there. It didn’t stick. Dementia also involves losing the ability to do even common activities, such as use a phone or make change. Tasks that require multiple steps will become increasingly difficult.

The early stage of dementia is often one of confusion, fear, and depression. Even if there is no formal diagnosis, the person with the problem usually senses that something is wrong. And he or she may still have enough self-awareness to understand the consequences of a disease such as Alzheimer’s. It’s equally likely that the person may not recognize their own decline. They just don’t recall recent events. It’s nothing they are doing on purpose. It’s not like they can “try harder.” They can’t. The memory simply didn’t form.

Below are some common signs of the early stage of dementia. (Your family member may show some of these symptoms, and not others.)*

Memory and thinking skills

  • Forgets recent events
  • Loses things
  • Easily distracted
  • Problems with numbers (adding, subtracting, balancing the checkbook)
  • Problems with planning and organizing

Communication

  • Trouble finding words or names
  • Repeats questions or stories soon after saying them

Behavior and mood

  • May become depressed, withdrawn, or irritable

Daily self-care

  • Eventually needs help with household affairs, such as cooking and cleaning (signs of a possible problem: scorched pots or moldy food in the refrigerator)
  • Trouble managing money (signs of a possible problem: shut off notices from the utility company. Very susceptible to scams and con artists)
  • May have trouble taking medications as directed
  • May get lost or confused when driving or walking, even in familiar areas

* Signs and stages adapted from a publication of the Alzheimer’s Association – Greater Illinois Chapter.

Primary issues, tips, and concerns of the early stage:

  • You may not know there is a problem. Your family member may just seem a little less “with it.” People are very adept at compensating. And if your relative is married, a spouse may naturally take up the slack.
  • Early diagnosis is important. Medications are available that can slow the progression of the symptoms. And it may be that your loved one’s confusion is caused by something such as depression, which can be cured. The sooner your family member gets tested, the sooner treatment can begin.
  • Deciding who to tell and when. Many people feel ashamed of a diagnosis of dementia. And some people or situations may become uncomfortable once a diagnosis is disclosed. This is a very personal decision.
  • Concern about driving. Driving requires thinking and good spatial skills. Dementia impairs both of these. The person with dementia is not likely to even recognize they have a problem. Everyone will eventually need to retire from driving. Knowing exactly when to stop is complicated. Read our article about driving safely and talk with the doctor.
  • Depression is big. Depression can cause many of the same symptoms as dementia. And, a person with memory problems can get very frustrated and feel very blue. Especially after a formal diagnosis, it is not uncommon for the patient to become depressed. The good news is that depression can be treated. Staying on top of the depression can at least lessen the number of factors contributing to your relative’s confusion or distress.
  • Join a support group. People in the early stages of dementia have special problems and needs. So do their family members. Gathering with others can provide a tremendous amount of comfort for you both. You are also likely to learn valuable tips for handling common situations.
  • Important legal and financial decisions. This is the time to make decisions about financial and medical matters. Now, when your loved one is still able to assess options, he or she should complete an advance directive. Your relative should also arrange for a will or living trust. He or she should assign a person to handle finances when managing money becomes too difficult. See our article about proxy decision makers in Your Changing Role.
Which of these challenges is the most pressing? Which of these tips appeal most?
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Middle stage of dementia

This stage of dementia can be very emotional. Your relative may or may not be aware of his or her condition at this point. The world is simply very confusing and very disorienting.

To your family member, it may seem like nothing is reliable. This may bring on paranoia. Your relative may put something away and have no memory of having done so. When he or she cannot find it, the only conclusion that makes sense is that it was stolen.

Emotions run high. When the reasoning part of our brain can no longer function, we fall back on instinct.

At this stage, your relative may become a danger to self and others. For example, your family member may not recognize an emergency. He or she may not know what to do or who to call. Your family member may not even remember how to use the phone.

Driving is no longer safe at this stage. And cooking may be a fire risk if your loved one forgets and leaves the stove on. Your relative’s ability to live independently is questionable.

Although memory and logical thinking are impaired, it is important to remember that your family member can still enjoy life. Activities just need to be simplified. They need to be broken down into single-step processes. If you focus on what’s still there, rather than what’s gone, you will see opportunities for joy. For instance, your family member’s sense of humor may be much the same. And if you can be tolerant of repeated stories, he or she can get great pleasure out of revisiting the past.

Below are some common signs of the middle stage of dementia. (Your family member may show some of these symptoms, and not others.)*

Memory and thinking skills

  • Difficulty with short-term and long-term memory
  • Forgets parts of his or her personal history, especially more recent years
  • Trouble solving simple problems
  • Easily disoriented

Communication

  • Trouble tracking conversations
  • Difficulty forming complete sentences

Behavior and mood

  • More easily upset or withdrawn

Daily self-care

  • Needs practical help with dressing, bathing, and taking medications
  • Slowed walking and reaction time
  • No longer safe to drive
  • Easily becomes fatigued

* Signs and stages adapted from a publication of the Alzheimer’s Association – Greater Illinois Chapter.


Primary issues, tips, and concerns of the middle stage:

  • Routines are important. Your family member will still want to be involved in life. He or she may be able to do things out of habit or long-term memory. Sticking to routines, therefore, is very comforting. As much as possible, do things at the same time in the same way each day.
  • Reduce clutter, noise, and stimulus. With memory failing, much of life seems “new.” But this can be tiring. Having to process lots of information at once can be overwhelming. For instance, taking your relative to a boisterous family gathering might not go over well. Instead, strive for calm, unhurried situations. Your loved one will feel much less stressed if things are kept simple.
  • Emotional sensitivity is high. People with dementia are very perceptive emotionally. They may not be able to follow the words in a conversation, but they “read” tone of voice and body language. In a tense situation, your relative will become tense. If he or she is treated like a child, your family member will likely become indignant. Just because the mental processes do not work well does not mean that a person has lost the memory of being respected, or of what a respectful or disrespectful tone of voice sounds like. Without memory or reasoning, your family member is relying on instinct to get through the day. He or she will seek basic feelings of safety and connection.
  • Do not insist that your relative try harder. Forgetting is not about laziness or lack of practice. It’s the result of the disease that is causing the dementia. Your family member’s version of events is very real to him or her. Discounting it or trying to prove their version never happened will only build anger and mistrust. Instead, accept that your relative sees things the way he or she does and work around it as best you can.
  • Memory cards can help with anxiety and caregiver frustration. People with dementia often get anxious and will worry about a particular issue. They will ask the same question over and over. No matter how often they hear the answer, they don’t remember it, so they ask again. This can wear down the patience of a saint. Research has shown that if you write the answer to a question on a piece of paper, such as an index card, and make a point of putting the memory card somewhere special (a purse or on the refrigerator door), people with dementia can often remember to go look for the answer. At the least, when they ask their question, you can remind them that the answer is on the card and where they should look. You are spared answering the same question over and over, and they are empowered to get relief from their worries.
  • Social inhibitions are gone. Your relative may do things that are very natural but cause others embarrassment. For instance, your mom may take off her clothes if she is hot. Your dad may comment that someone is ugly or has bad breath. Families report that coping with embarrassing behaviors is one of the more stressful aspects of caring for a relative with dementia. Look for clues or triggers that have caused past incidents. This can help you foresee, and prevent, a future event or outburst. Explaining to others that your relative has dementia can also help ease the embarrassment. Once people understand, they can be very compassionate. Keeping a sense of humor never hurts.
  • Getting lost. This is the stage when your family member may still have enough physical strength to walk long distances, but lacks the ability to remember how to get home. If you have not yet registered your relative for the Safe Return program, it is wise to do so now. This program provides your loved one with a bracelet that identifies him or her as a person with dementia and includes contact information. It also helps law enforcement personnel identify and find your relative if he or she should wander away. This may be time to put locks on doors or even install an alarm so your relative cannot leave the house without alerting whoever else is living there.
  • Bathing is an issue. Bathrooms are cold. Water is noisy. The tub may be slippery. Soaping down and shampooing hair is actually a complicated process. If your family member is a modest person, he or she may feel uncomfortable having help with bathing, even from a spouse. Heat the bathroom first before bathing. Run the bath before your relative comes into the room. Install grab bars and nonskid mats and use a bath bench to help your family member feel less fearful of falling. Have bathtime occur at the same time of day. Mornings are often best when your parent is less fatigued. Try rinse-free soap. And remember, sponge baths in the bedroom are often an easier, and equally effective alternative to baths and showers.
  • Nighttime restlessness. About 20% of persons in the middle stage become agitated or restless at night. Restless behavior may start in the late afternoon as the sun goes down and extend until the wee hours. There are many theories why this occurs, but no one knows for sure. The best remedies are to have a physically active day and discourage an afternoon nap. Turning on lights around 3:00 p.m. and leaving them on low throughout the night may help. Reducing or eliminating sugar and caffeine late in the day can ease restlessness. If nighttime restlessness persists, talk to the doctor. As with any disturbing behavior, some other factor may be causing discomfort or anxiety.
Which of these challenges is the most pressing? Which of these tips appeal most?
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Late stage of dementia

At this stage, your relative may seem very inwardly focused. The late stage is when he or she may no longer recognize family members. Or, your relative may mistake you for someone known in childhood. Confusing the present with the past is common. But your loved one will remain very sensitive to the current environment. The emphasis of this stage, and in the final stage, is to keep your relative feeling loved, known, and safe.

People in the late stage of dementia tend to be very aware of all their senses, so they find enjoyment in

  • happy or soothing music
  • pleasant smells
  • pretty pictures
  • tasty foods
  • clothing or objects that are soft to the touch
  • affection and gentle massage

In this stage your family member is definitely not able to live safely without 24/7 assistance.

Instinct is a primary driver. Your relative no longer has control over his or her environment. But he or she will be very perceptive emotionally. If you exude love and show caring with your body, face, and tone of voice, your relative will likely respond in kind. When he or she becomes anxious about something, even if it seems ridiculous, show concern. Your relative needs to know that you are trustworthy, that you are an ally. If the person you care for becomes anxious, you can often distract him or her away from the cause of concern and substitute a positive, engaging activity.

Communication is severely impaired in the late stage. Your family member will have difficulty understanding what others are saying. He or she will likely talk less and less. What’s said may sound like nonsense. But listen for possible symbolic meaning. “I’ve been robbed” is a poetically accurate depiction of memory loss. “I want to go home” is often not so much about location as a longing for the sense of comfort that “home” represents. Studies have been done during which elders with dementia free associate, draw, and dictate their thoughts. They can be surprisingly insightful.

Below are some common signs of the late stage of dementia. (Your family member may show some of these symptoms, and not others.)*

Memory and thinking skills

  • Mixes up recent and past events
  • Doesn’t remember friends and relatives
  • Unable to follow a two-step command

Communication

  • Cannot carry on a meaningful conversation
  • Speaks in phrases. Words and sentences are often disconnected.

Behavior and mood

  • May not be able to recognize pain or hunger or the need to go to the bathroom
  • May express unmet needs by yelling/calling out
  • Difficulty engaging in activities

Daily self-care

  • Unable to live independently. Cannot dress, bathe, or use the toilet without assistance.
  • Unable to control bowel and bladder
  • Problems with balance and coordination
  • Sleeps often

* Signs and stages adapted from a publication of the Alzheimer’s Association – Greater Illinois Chapter.

Primary issues, tips, and concerns of the late stage

  • Emotional outbursts. Loud noises, cursing, refusing to cooperate, and even aggressive behaviors are usually a sign of pain or distress. It can be physical pain or emotional pain. Persons in the late stage of dementia usually cannot tell you what they are feeling. Look for nonverbal signs of physical pain, such as groaning, a furrowed brow, rapid breathing, or grabbing or clutching a part of the body. If there is no obvious physical problem, it may be something internal, such as a bladder infection. It’s wise to check with the doctor if outbursts are a problem. There may be a medical condition at the root of it. Or the source of the problem may be in the environment.
  • Look for triggers. Usually there is a purpose behind distressed behavior. Think about what was happening just before your relative did something strange or difficult. Was there pressure to get something done in a hurry? Did you ask him or her to do something that was perhaps too complicated, had too many steps? Or think about what need your family member might be trying to fulfill. For instance, wandering or restlessness may reflect a need for physical exercise. Anger or agitation may be a response to feeling out of control of a situation.
  • Use distraction techniques. One advantage of forgetfulness is that you can use the short attention span to distract your relative from a triggering situation. Perhaps there is a distressing program on the television. Maybe he or she was frightened by a noise or a picture. You can either remove the distressing object or suggest another activity and then take your family member to a different room to complete it. Distraction works best if you acknowledge your relative’s feelings first and establish a loving, nonverbal connection. Hold his or her hand, touch a shoulder reassuringly, and make eye contact. Then you might say something like, “I can see you’re upset. I would be too. Let’s go outside and check on the bird feeder.”
  • Accommodate their preferences. It’s easier to let your relative do what feels natural to them than it is to try to force them to do things differently. If carrying a baby doll gives purpose and a sense of meaning and comfort, then let the doll be part of the family. Your creativity and flexible responses can do much to generate an environment that feels safe and loving to a person who is confused and potentially scared much of the time.
  • Find “useful” activities. Even people with very clouded thinking like to participate and feel like they are helping. Folding towels, sanding wood, sorting coins, stringing beads, or sweeping the walkway…these are all familiar activities that can be comforting and very absorbing for a person with dementia. Plus time spent on these safe activities gives you a break. (Hint: The activity does not have to be literally useful. You can take the hamper full of folded towels to another room, and jumble them up again. Then come back and ask if your relative can help you by folding this load of laundry.)
  • Use short sentences and show rather than tell. As language capabilities diminish, your loved one can get easily confused. If you want your relative to do something, break it down into simple steps. Or better yet, show your relative what to do, one step at a time.
  • Wandering. Your relative may exhibit restless behavior. This can include walking aimlessly for hours. Or he or she may continually talk about needing to get home. Your family member may be searching for something and be unable to say what it is. Putting up signs for the toilet, the kitchen, and the closet can help your loved one stay oriented. Getting regular exercise can burn off extra physical energy. If you are worried about safety, something as simple as a “stop” sign on the door or a yellow ribbon across it can keep your relative inside. Plastic “child-safe” doorknob protectors can be useful, as can a home security system if you are worried about nighttime wandering outdoors. Many people with memory problems have trouble spatially. Sometimes a black mat placed in front of the door will be mistaken as a large hole and dissuade a person with dementia from crossing over it.
  • Following you from place to place. This is often called “shadowing” and it can be very unnerving. As your family member becomes less capable, he or she will want to stay beside you. Your presence provides a sense of safety and security. Providing verbal and nonverbal comfort and reassurance can help. Also, distracting your relative with an engaging activity can give you some moments alone.
  • Mealtime problems. Although your relative may still have an appetite, he or she may have trouble with the mechanics of eating. Using a fork or knife becomes too complicated. It may be better at this stage to change to finger foods. And a “tippy cup” or one with a built-in straw may be easier than a regular glass or cup for fluids.
Which of these challenges is the most pressing? Which of these tips appeal most?
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Final stage of dementia

The focus of the final stage is completely on comfort care. Most physical abilities are so limited at this point, that your relative may spend most of his or her time in bed or in a chair. And language abilities are so impaired that he or she is not likely to be able to engage much. Keeping your relative clean and content is the highest priority.

Below are some common signs of the final stage of dementia. (Your family member may show some of these symptoms, and not others.)*

Memory and thinking skills

  • No awareness of past or future

Communication

  • Unable to speak, or uses only a few words

Behavior and mood

  • A “flat affect,” meaning an inability to show emotion

Daily self-care

  • Needs to be fed, bathed, and have diapers changed
  • Unable to walk without assistance
  • Little desire to eat and may have swallowing problems
  • Sleeps much of the time

* Signs and stages adapted from a publication of the Alzheimer’s Association – Greater Illinois Chapter.

Primary issues, tips, and concerns of the late stage

  • Meaningful visits. If your relative is no longer able to converse, visits can be awkward. This does not mean that your presence is without value. Your loved one can still benefit from tender contact with family members. Although speech may be limited, he or she probably still has use of the five senses: touch, taste, smell, sight, and hearing. Touch and affection are especially meaningful in this stage. Rubbing lotion on hands or feet, cuddling a pet together, or simply holding hands in loving silence can be very reassuring. Singing favorite tunes or hymns or reading poetry or favorite passages out loud is another way to spend time together. You can go outside and enjoy the smells and fresh air of nature, the sounds of the birds, and the feel of the sun on the skin. Even bringing items that smell good (perfumes or flowers) or favorite foods can create joyful sharing of a pleasant activity. An act as simple as brushing your relative’s hair can convey love and caring.
  • Hallucinations and delusions. Hallucinations involve seeing things that others do not. Delusions are beliefs that are not founded in fact, such as fear that someone is trying to break into the house. Both are common in the final stage. Telling your relative that their visions or beliefs are not true will only breed mistrust. Instead, you can choose to go along with what they perceive if it seems harmless enough. Or, you can offer verbal and nonverbal reassurance that your relative is safe. You can then state what you are seeing and use distraction techniques to remove triggers. Keeping a room well lit can reduce shadows, which are often a source of unfounded fears. Playing soothing music might help. Medication is also an option if your loved one seems especially distressed.
  • Non-verbal signs of pain. Keep your eyes and ears open for groans, frowns, rapid breathing, and/or clutching or grabbing parts of the body. Sudden restlessness or emotional outbursts may also be signs of pain, including a bladder infection or other internal condition. If your loved one cannot be soothed, then it is wise to call the doctor to rule out a medical cause.
  • Poor appetite. Whereas the late stage involved problems with the mechanics of eating, in the final stage your relative may not have much desire to eat. This is a natural part of the process. Food may have to be pureed. But even if you use a spoon to feed your loved one, he or she may simply not be interested.
  • Difficulty swallowing. Part of the decline of dementia often involves forgetting how to swallow correctly. Food, and especially liquids, can go down the wrong way, into the lungs. There are products you can buy that will thicken liquids to stimulate the natural swallowing reflex. This enhances the likelihood the fluid will go into the stomach rather than the lungs.
  • Repeated pneumonias. Food or liquid that gets into the lungs can cause infections there. As swallowing becomes more difficult, food more frequently goes down the wrong pipe and creates what is called “aspiration pneumonia.” This is often the actual cause of death for persons with dementia. It is a painless way to pass. The body simply becomes unable to bring the lungs back to a level of health needed to survive.
  • Consider treatments carefully. Because people in this stage cannot make decisions for themselves, you will need to rely upon the decision maker established in your relative’s advance directive. Hopefully the decision maker knows your relative’s personal values enough to make treatment decisions based on what your relative would want. Painful procedures and difficult side effects are hard for a person with dementia to understand. Often they are scary. Especially because the final stage means the natural end is near, you may choose instead to allow your confused loved one a better quality of life. The focus is on staying comfortable rather than subjecting him or her to tests and activities that will be scary, potentially painful, and will only prolong the inevitable.
  • Ask the doctor about hospice. Hospice care can be ordered by a doctor and is completely covered by Medicare. It involves a team of professionals, including a doctor, a nurse, a social worker, and a chaplain. They have special training in keeping patients comfortable all the way through the dying process. The hospice team understands the special needs of patients who are in the final stage of dementia. In addition, they can help you make decisions you may be called upon to make because your family member is no longer able to express health care preferences.
Which of these challenges is the most pressing? Which of these tips appeal most?
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Getting help

Although many different conditions cause dementia, one thing is certain: you need help to care for a person with memory loss. As your relative’s symptoms get worse, the emotional and physical demands will tax your ability to remain healthy yourself. Surprising situations arise. There are difficult ethical decisions to confront. Your relative may do things that you never would have imagined. It can be crazy making! This is why you need the balance of help from others. In addition to reading our article about Finding Help, we suggest the following:

  • Get a diagnosis. Some causes of dementia can be treated. Some medications can slow the progress of symptoms. Even if there is no cure, these medications can result in a better quality of life for you and your loved one. Getting a diagnosis involves many different types of tests. Talk to the doctor about a dementia evaluation. A care manager can help guide you through the process.
  • Educate yourself. Once you have a diagnosis, learn as much as you can about the condition. Ask the doctor for printed information. You can also go to the website of the national organization dedicated to that illness. Find those websites in the Specific Conditions section of our Educating Yourself page.
  • Develop a plan for managing your stress. More than any other condition, caring for someone with dementia demands a lot from family caregivers. Create a plan to manage and reduce your stress. Read our article about coping with stress. It’s filled with suggestions from experienced family caregivers. Family caregivers who feel stressed have much greater health problems than those who do not feel stresses. The key is good stress management.
  • Join a support group. The Alzheimer’s Association offers support groups for all family members coping with dementia, even if the care receiver does not have Alzheimer’s disease. There are even support groups for persons who are in the early stages of the condition. Many other organizations offer disease-specific support groups for family members.
  • Look for support services. In the early stage, your family member may be able to live independently, with the help of support services. For instance, a bonded bill-paying service can handle balancing a checkbook and organizing monthly bills for payment. A care manager can do an evaluation to help you identify the level of dementia and which local services would offer the most appropriate support.
  • Take breaks. Everyone needs breaks. It’s not selfish. It’s essential! Dementia caregivers are frequently the subjects of stress research because caring for someone with memory loss is incredibly stressful. Take time away on a regular basis. You will be a better caregiver when you return. And you will increase your stamina for the long haul. Whether it’s an hour or a couple of days, you need time when you are free of caregiving responsibility. Arrange to have friends or family visit with your family member. They can take him or her to the park, to church, or out for a drive. Or, some places provide daytime activities and supervision for persons with dementia. Some even help with transportation. They provide pick-up and drop-off services right at your door.
  • Consider in-home care. Having help come to the home is the first choice for many families. However, it can be expensive. And there are challenges to hiring paid caregivers on your own. Our article about finding help can guide you. Talking with a care manager can also be helpful. These professionals understand employment laws. They can help you select a paid caregiver suited to your family member’s needs and resources.
  • Consider a new living situation. There may come a time when your relative needs more round-the-clock support. A long-term care facility may be more cost effective than in-home care. Many different levels of care are available. Assisted living facilities meet the needs of persons who are still fairly independent. Dementia facilities provide security and specially trained staff to care for persons in the later stages of the disease. A care manager can do an assessment of your loved one and talk to you about local options that fit your unique situation.
  • Support the spouse or partner. If your relative lives with a “significant other,” that partner is likely under a tremendous amount of stress. Dementia causes profound changes in personality and behavior. Your relative may no longer recognize his wife or her husband. He or she may treat the spouse rudely or make overtures to others. The relationship is likely to become very one sided. The “well spouse” does all the giving and the person with dementia only receives. And he or she may receive without showing any gratitude. The manners part of the brain simply stops working. A spouse or partner often must function like a nurse while dealing with his or her own feelings of loss and frustration. If this is a later-in-life union, the demands of caregiving can be especially challenging. Add to this a partner’s own health problems and the combination can put your relative’s spouse at risk. In fact, the illness and mortality rate for stressed partners of persons with dementia is significantly higher than for partners whose loved ones do not have dementia. For all these reasons, stress relief is especially important for caregiving spouses and partners.
Who can you turn to for support at this time?
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