This Is Dementia: Stages, Types, Treatments, & Care
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Do you know which dementia stages are associated with significant personality changes? How about which types of dementia cause hallucinations? Did you know that there are other forms of dementia besides Alzheimer's disease?
Here's why it's important to educate yourself about dementia: Prevention, in many cases, may be possible. And for anyone already showing symptoms, it's crucial to understand what may lie ahead as the condition progresses. Friends, loved ones, and caregivers can provide much better support (and minimize their own stress) by having good information and giving this subject the full attention it deserves.
In this article, you'll learn about several aspects of dementia, including its potential causes, the signs to watch for, how it's diagnosed, and how it can be treated and managed. You'll also learn how to live with someone who has dementia and provide compassionate care in a way that maintains their dignity. You'll even discover reasons for hope.
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Dementia vs. Alzheimer's Disease: What the Terminology Means
The difference between dementia and Alzheimer's disease is that dementia is a general category of symptoms and Alzheimer's disease is a specific disease diagnosed within that overall category. Dementia is an umbrella term for several types of disorders that involve life-disrupting cognitive decline. Alzheimer's disease is the most common form of dementia, but many other forms also exist.
So a person can have dementia without having Alzheimer's disease. A person can also have multiple kinds of dementia (a condition known as "mixed dementia"); Alzheimer's disease may be just one of them.
In short, a person with Alzheimer's disease has dementia. But a person with dementia doesn't necessarily have Alzheimer's disease. Either way, the outcome is usually the same. A person with dementia retains consciousness but progressively loses their mental abilities, leading to a severe inability to perform basic daily activities. Memory, communication, reasoning, and motor functions can all be affected.
The Most Common Types of Dementia
It's essential to understand the differences between various dementia types to give the patient the appropriate care. But pinpointing what kind of dementia a person has can be challenging since different forms of dementia often have overlapping symptoms. In many cases, a completely accurate diagnosis can't be made until a patient passes away and an autopsy is performed.
Here are the most common forms of dementia you should know about.
As the most common type of dementia and the sixth-leading cause of death in the U.S., Alzheimer's disease poses major challenges for patients, loved ones, caregivers, and the nation's healthcare system. Alzheimer's is currently a terminal disease, meaning that it is fatal and irreversible; no cure exists. So the toll it takes can be overwhelming for everyone involved.
Like most other forms of dementia, Alzheimer's disease comes on gradually. People with this disease tend to appear perfectly normal during the earliest stages. But as the disease progresses, the symptoms slowly become more obvious and life-altering. Every patient is different, but some of the most characteristic symptoms of Alzheimer's disease include:
- Memory problems (especially when it comes to remembering new information)
- Trouble using words to communicate
- Confusion and disorientation
- Impaired thinking and poor decision-making
- Strange, out-of-character behavior
- Emotional problems, such as sadness, fear, or anxiety
- Lack of interest in previously enjoyed hobbies
- Trouble completing routine tasks and daily activities
- Restlessness and agitation
- Impaired motor functions, such as trouble walking and swallowing (mostly during advanced stages of the disease)
Researchers continue to make discoveries about what happens to the brains of Alzheimer's patients. They've already discovered that this disease causes changes to a person's brain at both a structural and cellular level. At the structural level, the disease impairs the limbic system first, followed by the cerebral cortex and then the brain stem. The disease can also prevent the formation of new blood vessels in different parts of the brain. At the cellular level, the disease progressively destroys a person's brain cells (known as neurons). As neurons die, affected areas of the brain start to shrink. Two proteins are thought to play a role in that process:
So for people with Alzheimer's disease, it's like their internal "lights" are slowly being dimmed and shut off. And there is currently no way to turn those lights back on; the damage is permanent. That's what makes Alzheimer's such a scary illness. Plus, the damage often begins ten or more years before any symptoms emerge.
Here are some additional facts about Alzheimer's disease:
Vascular dementia is another prevalent form of dementia. But many people with vascular dementia also have Alzheimer's disease. With medication and lifestyle changes, you can treat vascular dementia and slow down its progression. However, the damage that's already done cannot be reversed. And the condition itself cannot yet be cured. With vascular dementia, symptoms generally vary a little depending on the underlying cause.
Vascular dementia is caused by interruptions to the flow of blood in a person's brain. Those interruptions can be due to strokes or build-ups of fatty material that result in the narrowing of blood vessels. Some patients have both problems. Symptoms of vascular dementia can include:
- Memory loss
- Trouble organizing thoughts and coordinating actions
- Difficulty with decision-making
- Struggles with problem-solving
- Trouble communicating verbally
- Personality changes
- Loss of bladder control
- Mobility problems
- Numbness or weakness in a particular area of the body
Not everyone who has a stroke develops vascular dementia. But having a stroke does increase your risk. Roughly one-third of stroke survivors who previously had no dementia eventually develop this condition—often within one year.
Lewy Body Dementia (LBD)
As the second most common type of degenerative dementia, this sometimes-overlooked disease affects many people—about 1.4 million people in the U.S. alone. But it can be very difficult to diagnose since it often occurs alongside Alzheimer's disease or vascular dementia. It can even occur alongside Parkinson's disease. Patients with LBD can display a wide variety of symptoms. Some of the most distinctive signs of Lewy body dementia can include:
- Visual hallucinations
- Symptoms that get better or worse from one moment (or hour) to the next
- Physically acting out violent or vivid dreams at night
- Staring with a blank facial expression
- Shaking while walking
- Standing or moving stiffly, slowly, or with a shuffle
Other symptoms often include the same ones displayed by Alzheimer's patients or those with vascular dementia. In the brains of people with LBD, abnormal protein deposits (known as Lewy bodies) accumulate and make it difficult for neurons to communicate. As the disease progresses, more and more neurons die, causing all kinds of cognitive, behavioral, and physical problems, particularly at the most advanced Lewy body dementia stages.
Frontotemporal Dementia (FTD)
Unlike other types of dementia, FTD doesn't usually cause memory problems until late in the disease cycle. That's because it first attacks the parts of the brain that control speech, personality, thought, and behavior. FTD is considered a group of dementias, with each type affecting a person in particular ways. For example:
Many people with FTD also experience muscle weakness and trouble with physical movement. The underlying cause of FTD is currently unknown. However, in some patients, certain genes may play a role. And some FTD patients have abnormal accumulations of proteins (called Pick bodies) in their brains.
Other Forms of Dementia & Dementia-Like Illnesses
In addition to the types of dementia outlined above, it's a good idea to know about some other conditions that can cause or mimic dementia. For instance, many adults develop mild cognitive impairment (MCI). Having MCI means that, for their age, they have slightly greater-than-expected difficulties with speech, memory, or decision-making. However, those problems don't yet rise to the level of dementia. Other people may develop dementia or dementia-like symptoms as a result of conditions like:
Causes and Risk Factors
Did you know that dementia is not a normal part of getting older? It's true. Old age—by itself—does not cause dementia. However, old age is one of the top risk factors for dementia since most people who suffer from it are older than 60. But as you'll see, there are at least 20 potential causes of dementia, which should be more accurately referred to as risk factors. For most types of dementia, the root cause remains somewhat of a mystery. Plus, what causes dementia in one person may differ from what causes it in someone else.
For now, the best that researchers can say is that a wide range of medical, genetic, environmental, and lifestyle factors may cause Alzheimer's or dementia of other types. But the genetic component brings up a good question: Is dementia hereditary? Here's the answer: It depends. Most forms of dementia are not hereditary—at least not in any direct way. Most dementia patients don't have any parents or grandparents who had the condition. However, some rare forms of dementia can be passed on to children or grandchildren. They include:
In a small minority of patients, genetics play a very direct role in the pathophysiology of dementia. But what about the greater majority? What might contribute to the development of dementia in everyone else who gets it? We already know that old age and family history are top risk factors. But as dementia research progresses, all kinds of additional risk factors continue to be linked with an increased chance of developing dementia.
None of the following risk factors guarantee that a person will get dementia, but they can make it more likely. Here are some of the biggest factors worth knowing about:
- Heart disease
- High blood pressure
- High cholesterol
- Heart infection
- Traumatic head injury
- Brain inflammation
- Down syndrome
- Parkinson's disease
- Some autoimmune diseases
- Prolonged stress
- Alcohol abuse
- Drug abuse
- Poor diet
- Lack of physical activity
- Social isolation
- Intellectual boredom
- Low educational attainment
- Excessive exposure to certain chemicals or minerals
Some researchers have also found a link between proton pump inhibitors and dementia. Proton pump inhibitors (PPIs) are a class of medications used for treating a variety of gastrointestinal illnesses such as chronic indigestion, ulcers, and acid reflux. They work by reducing the amount of stomach acid a person produces. A JAMA Neurology study found that among frequent, long-term users of a PPI, dementia was 44 percent more likely to develop than among those who only took a PPI occasionally. So a link may exist between PPIs (like Prevacid, Nexium, Aciphex, Protonix, and Prilosec) and dementia, but taking one does not guarantee that you will develop a cognitive disorder. It's just one more risk factor.
Some researchers believe that hearing loss and dementia may be linked. Cognitive decline may speed up when an older adult loses a significant amount of their hearing. The constant strain of trying to hear and understand what's being said may put too much stress on the brain or even affect a person's brain's structure at the cellular level. Plus, social isolation is a risk factor for dementia, and hearing loss can make people want to avoid going out or socializing.
What to Look For: Early Signs of Dementia
Since dementia usually comes on gradually, it's easy to miss the early indicators. Plus, some types of dementia start damaging a person's brain long before any symptoms appear. For example, preclinical Alzheimer's is a stage that can last a decade or more without any obvious hint of disease. However, in some cases, dementia can appear to come on all of a sudden—mostly among people with certain types of FTD, vascular dementia, or CJD.
Dementia primarily affects seniors and the elderly. But it can also affect those who are still in their prime working years. Early-onset dementia is the term used when it strikes younger people. The age for early-onset dementia varies, but it's always under age 65 and frequently falls in the range of 50 to 64. People much younger than that can also get dementia.
Since different cognitive disorders can affect different people in different ways, it's important to be aware of a fairly wide range of possible symptoms. That way, you'll have an easier time recognizing potential problems before they progress to a more advanced stage. In the beginning, a person may display just one or two of the following indicators.
Early Signs of Dementia Checklist
What Happens as Dementia Progresses
As people approach the more advanced dementia stages, they become more like strangers to those who know and love them. Their personalities often change significantly, making their family members feel robbed and heartbroken. And they become unable to perform activities of daily living without assistance. Eventually, their minds and bodies fail entirely.
During mid-stage dementia (also known as moderate-stage dementia), the symptoms grow more intense and restricting. A person may show many of the symptoms already described, but they will be increasingly hampered by them. By this point, dedicated dementia care is almost always necessary. For people at this stage, memory issues, behavior, and decision-making become more problematic. And they often start needing assistance with tasks like eating, going to the bathroom, bathing, and getting dressed. They also may wander haphazardly, have delusions, grow suspicious of other people, and take compulsive actions.
During late-stage dementia (also known as severe dementia or end-stage dementia), a person's brain is so damaged that even basic bodily functions are affected. Patients at this stage need 24/7 care since they are totally dependent on their caregivers. Their abilities to move, speak, swallow, breathe, and control their bowels and bladder are often severely limited, to the point of failure in many cases.
It's sad but true: A person can die from dementia. Most types of dementia are fatal since they're currently incurable. But, aside from rare forms of dementia, it can take anywhere from three to 20 years for dementia to progress from diagnosis to death. Whether you're talking about Alzheimer's disease, LBD, FTD, or vascular dementia, life expectancy after the first onset of symptoms varies from patient to patient. What researchers do know is that the biggest factors involved in the life expectancy of dementia patients include:
An older person can live with dementia for between roughly four and 11 years, depending on their age. Here's how that breaks down for seniors and elderly people, according to a study in The BMJ:
- 65 to 69 years old: 10.7 years
- 70 to 79 years old: 5.4 years
- 80 to 89 years old: 4.3 years
- 90 years old or above: 3.8 years
How Dementia Is Diagnosed
Unfortunately, a single, 100-percent-accurate test for dementia doesn't exist yet. And many cases of dementia can only be completely confirmed with an autopsy. That means doctors often have to make a "best guess" determination and classify their living patients as having either "possible" or "probable" dementia. So, how is dementia diagnosed in patients who are still alive? It requires multiple steps.
First, a doctor will take a comprehensive medical history. A thorough physical exam will then be performed, which might include simple neurological tests for evaluating things like speech, coordination, eye movement, and reflexes. The doctor will order lab tests to help rule out other illnesses and check various health markers such as blood counts and nutrient and hormone levels. The tests will not be invasive. They will be based on blood and urine samples. A brain scan may also be ordered, especially if the doctor suspects vascular dementia. A brain scan may also be ordered, especially if the doctor suspects vascular dementia. Finally, the patient will participate in various tests for assessing mental ability.
Several aspects of a patient's mental abilities are usually evaluated, including:
The clock-drawing test is another simple assessment tool that's often used. A patient is asked to draw a traditional round clock with all the numbers and hands showing a specific time. Any errors in the hands or numbers placement indicate cognitive problems that need to be further evaluated.
A doctor will also usually ask a patient's loved one or caregiver about any abnormal behavior or abilities changes. Once the doctor has gathered all the results and information, they will either diagnose the patient or refer them to another medical professional for additional evaluation.
Dementia Rating Scales: What the Stages Mean
After a patient has been diagnosed with a particular kind of dementia, the disorder's progress needs to be rated and tracked. The most basic way to rate a patient's dementia is to use the three-stage method, which was touched on earlier in this article. As a reminder, the three general levels of dementia are:
The three-stage scale is useful for general communication. But many caregivers and healthcare professionals prefer to use other, more specific types of scales when rating and tracking the progress of their patients' dementia. The following scales are often used because they can help provide better guidance when it comes to anticipating and figuring out a patient's care needs:
Global Deterioration Scale (GDS)
This scale includes seven stages. It's mostly used for Alzheimer's disease since it places a large focus on memory and cognitive decline. It isn't as useful for types of dementia that don't involve memory loss in their early or middle stages. But since Alzheimer's disease is the most common form of dementia, this scale is widely used.
Based on the GDS, the seven stages of dementia are:
Clinical Dementia Rating (CDR)
This five-stage rating system is popular in the field of dementia research. It can also be used for a wider range of dementias. Researchers and some clinicians use the CDR to quantify how severe patients' symptoms are. They evaluate cognitive and functional symptoms related to memory, personal care, community interaction, sense of time and place, hobbies, home life, problem-solving, and decision-making. The five stages include:
Functional Assessment Staging (FAST)
The GDS is focused more on a patient's memory and cognitive ability. The FAST system is more narrowly focused on a patient's practical ability to carry out daily activities. (The same patient can be rated at one stage on the GDS and a different stage on the FAST scale.) As with the GDS, the FAST scale is intended to track the decline of Alzheimer's patients. But since it has a slightly different focus, it can also sometimes be applied to other kinds of dementia patients. This scale includes seven main stages, with multiple sub-stages in levels 6 and 7. The stages are:
Treatments and Prevention
In the vast majority of cases, a person cannot recover from dementia. Rare exceptions exist, but only for people who have symptoms of dementia caused by uncommon disorders that can be fully treated. There is currently no cure for dementia caused by Alzheimer's disease, LBD, or vascular dementia. However, many forms of dementia can be partially treated or even slowed down. The earlier a person is diagnosed, the easier it is to optimize their treatment and manage the symptoms going forward.
Depending on the particular patient, dementia treatment can involve several different components. For some patients, treatment for dementia occurs alongside treatment for other medical conditions, including illnesses that may be contributing to their cognitive decline. Doctors and caregivers often strive for a balanced approach that addresses the need to manage cognitive symptoms as well as physical and psychological symptoms. In many cases, the following treatments, therapies, and lifestyle changes can help with dementia:
Possible Future Treatments
Even though a cure for dementia doesn't currently exist, there is reason to hope. Scientists and researchers continue to discover potential new avenues of treatment that may lead to a cure within the next few decades. So if you or someone you love has been diagnosed with dementia, it may be worth looking into clinical trials for experimental or leading-edge treatments. A few examples of promising treatment possibilities being researched include:
For those of us who haven't developed dementia, it's worth considering how we might be able to prevent it. When you look at the many risk factors for dementia, it becomes pretty clear that we have the power to control some of them. For example, taking the following actions may reduce a person's risk of getting dementia:
- Stop smoking
- Eat a diet that's heavy on all kinds of fruits and vegetables
- Get daily exercise
- Treat high blood pressure
- Lose weight if obese or overweight
- Treat and control diabetes
- Minimize sources of stress
- Treat depression and anxiety
- Wear a helmet during certain activities to help prevent head trauma
- Stay curious and keep learning new things
- Maintain close friendships and family connections
- Have fun and socialize often
One more thing: Get your hearing checked and use hearing aids if necessary. An AARP article reports that about two-thirds of Americans develop hearing loss by age 70.
However, hearing aids are only used by about 15 to 20 percent of people with clinical hearing loss. By maintaining your hearing, you may be able to further reduce your risk of developing dementia.
How to Care for Loved Ones With Dementia
Aside from medical care and lifestyle changes, the best treatment for dementia may be companionship. After all, a person's dementia will almost always progress despite everyone's best efforts. But that person is still a human being with an emotional inner life and a need to bond with caring people. Dementia patients still deserve the best quality of life we can give them.
Of course, that is often easier said than done. People with dementia can be very difficult to live with. And being a caregiver can take a real toll on your well-being, not to mention your finances. The Alzheimer's Association report mentioned earlier notes that over 16 million people in America take care of dementia patients without getting paid. Eventually, many family caregivers require extra support or need to turn the care of their loved ones over to professional long-term care services, such as those provided by:
Are you in the position of needing to care for a friend or loved one with dementia? Planning ahead and knowing what to expect can make the whole experience go a little smoother. It won't be an easy job, but many caregivers have discovered how to successfully get through each day with grace, adaptability, patience, creativity, and compassion. Here are some tips to get you started:
1. Find a support group for caregivers.
Every caregiver has both good and bad days. It's perfectly normal to feel overwhelmed by the challenges of caring for someone with dementia. But that's why it's essential to take care of yourself too. Your own physical and emotional well-being should be a top priority. Think of it in terms of being on an airplane: If the cabin loses pressure, you're supposed to put on your own oxygen mask before helping others. If you don't follow that simple rule, then you risk failing everyone. It is appropriate—and recommended—to seek support.
Let a support group be your oxygen. You may be surprised by how many caregivers and family members of dementia patients feel the way you do. You can learn from their mistakes and successes while bonding over shared challenges and coming up with new solutions together. All kinds of organizations offer support groups, resources, and services for those living with or caring for people with dementia. For example, check out the Family Caregiver Alliance or the Alzheimer's Association.
2. Seek to understand troubling behaviors.
Living with a person that has dementia is hard. It can help a lot to learn about the disease and why it makes people think and act the way they do. Trying to recognize why certain behaviors happen and learning not to overreact or take things personally is also helpful. In many cases, problematic behaviors will have an underlying cause that you may be able to do something about. For example, certain behaviors may stem from drug side effects, pain or discomfort, embarrassment, fear, boredom, overstimulation, hunger, thirst, fatigue, or needing to use the toilet. Like babies, many dementia patients aren't able to express what they need. They are trying to cope with circumstances that are out of their control.
When caring for a person with dementia, you can sometimes help change their behaviors by making simple modifications to your own behavior. (Maybe the person is reacting to something you say or do. Or maybe there's something "off" about the person's environment, such as too much noise from a TV show you're watching.) With other behaviors, it's often better to find creative ways to accommodate them rather than try to control them. Always remember that it's the dementia, not the person. Be prepared to go with the flow and calmly, creatively, and reassuringly deal with each situation, which may involve problematic behaviors like:
- Repeating the same words, sentences, sounds, or actions over and over again
- Resisting help, especially with bathing, going to the bathroom, or getting dressed
- Acting aggressively, either physically or verbally
- Wandering off
- Refusing to eat or drink
- Following, imitating, or interrupting you or other caregivers
- Acting jealous or paranoid
- Refusing to sleep at night
- Acting inappropriately, especially in a sexual way
- Urinating or defecating in places other than the bathroom
3. Establish a daily schedule and consistent routines.
Dementia patients need a lot of structure in their lives since their world often feels out of control. By creating predictable routines, you can help a person with dementia thrive as much as possible. The more familiar something is to the person, the greater the chance it will be stored in their long-term memory, helping offset some short-term memory loss. In that way, daily routines can have a grounding effect, providing relief from anxiety and reducing troubling behavior frequency. As much as possible, when developing a schedule and choosing routine activities, focus on the person's preferences and past favorites (i.e., what he or she liked doing before getting dementia).
4. Approach conversations the right way.
Besides dealing with behavioral problems, talking to someone with dementia is often one of the most challenging aspects for loved ones and caregivers. Conversations can quickly become frustrating if you enter into them with unrealistic expectations. That's why patience is one of the biggest keys to getting the most from face-to-face interaction. (Remember that you're speaking to someone who still has emotions despite their declining cognitive function.) In order to have positive interactions, many professionals recommend that you talk to a person with dementia by:
- Minimizing noise or other sources of distraction
- Speaking at their eye level
- Smiling and maintaining regular eye contact
- Holding their hand
- Speaking slowly, in a tone that's reassuring
- Using short words and sentences
- Avoiding open-ended questions that may be hard to answer
- Waiting for him or her to finish speaking before you say something new
- Paying attention to their body language for signs of discomfort
- Not correcting or arguing about their factual errors or false memories
- Putting more emphasis on positive feelings than on accurate information
- Changing the subject or moving to a different setting if he or she becomes agitated
- Using old photo albums to encourage conversation
- Staying upbeat and using simple humor when appropriate
- Being comfortable with extended moments of silence
5. Stay flexible and provide meaningful activities.
You won't always be able to stick to the daily routine. On any given day, your go-to strategies may not work. So you need some back-up plans in case the person you care for resists the usual activities. Plus, remember this: A person may have dementia, but he or she still needs opportunities to do things that create a sense of purpose and accomplishment. The nature and complexity of those opportunities will change as their dementia progresses, but everyone deserves to feel valued. And it doesn't have to be complicated. Even seemingly ho-hum activities can provide meaning in the life of someone who's losing cognitive function.
Daily routines should, of course, always include self-care activities like getting dressed, eating, taking medications, bathing, and resting. But they should also incorporate opportunities related to "work" and leisure—activities that provide a sense of being productive or a feeling of pure pleasure and enjoyment. Again, try to figure out activities that may be relevant to the person's life before he or she started experiencing cognitive decline. Here are just a few examples of possible activities for people with dementia:
- Going on walks, including with animals
- Weeding a garden
- Doing simple chores like dusting, vacuuming, folding laundry, making the bed, raking leaves, watering plants, or putting away groceries
- Petting a dog or cat
- Singing favorite songs
- Doing simple chair exercises
- Helping with food preparation
- Working on a simple jigsaw puzzle
- Finger painting
- Rolling yarn into large balls
- Playing Bingo or simple card games
- Sanding wood blocks
- Sorting objects like coins, buttons, stamps, poker chips, or nuts and bolts
- Listening to music or relaxing sounds
- Socializing with friends or family members
Books About Dementia Worth Checking Out
It isn't easy to live with dementia or to watch someone you love fade away from it. But support is available. And more effective treatments—or maybe even a cure—may be closer than any of us imagine.