Dementia affects between 17 and 25 million people worldwide and there are many types of the disease. Understanding the varying types of dementia is important and critical for both the patient and the caregiver. Not only will it allow for better planning, but it will also allow for more opportunity to include the diagnosed person in decision making before the disease progresses. The following is a list of the most common questions we receive on a recurring basis:
Dementia is a nonspecific term used to describe a person having changes in brain function that interfere with ability to function and do everyday activities. The person with dementia has problems in multiple areas of brain function. These problems can include memory, language, impulse control, ability to do things for self, personality, understanding of time, etc.
Types of dementia include: Alzheimer’s disease, vascular dementia, Lewy body dementia, Frontotemporal dementia (FTD) and mixed dementia (more than one type of dementia occurring in the same brain). Different types of dementia impact the brain in different ways, have different symptoms, cause changes in different abilities…in different orders…and at different rates.
Alzheimer’s disease is one type of dementia. It is a progressive and terminal disease. The changes typically occur slowly, over months and years, not hours and days. If the person has a sudden change in health status, living situation or caregiver system (for example, death of a spouse) he or she may appear to change quickly. The brain has actually been changing slowly but since the person was in a routine, the person’s abilities weren’t being challenged and he or she was relying on old patterns and memories to function.
The pattern and progression of the disease is predictable but the experience is individual and ultimately, the person’s entire life is affected by Alzheimer’s disease.
- Memory loss of recent events and information
- Confusion about place and time
- Familiar tasks become challenging
- Trouble finding words, finishing thoughts and sentences, following directions
- Decreased reasoning ability and altered judgment
- Changes in mood and personality, frequent mood swings, disinterest or withdrawal, suspicion
- Difficulty with complex mental tasks, planning, problem solving
- Aging happens to everyone. Dementia is always a disease; it doesn’t happen to everyone.
- With forgetfulness, new information can be stored; it may take more effort or practice, but new information can “stick”. With dementia, new information cannot be predictably retained.
- Forgetful people can use reminders, calendars, lists and to be able to do. With most dementias, these prompts cannot help after the earliest stages.
- Being forgetful makes an independent life difficult; having dementia makes independent life impossible.
- Being more forgetful
- Taking longer to learn new information
- Requiring more practice to learn new skills or technologies (you can do it, just have to try harder than you used to)
- Having more trouble recalling people’s names (more than you used to have)
- Knowing the word you want but hesitating, eventually finding the word (more often than you used to)
- Early treatment is more effective than waiting.
- Early and accurate diagnosis allows for better planning and opportunity to include the person with dementia in the process. Planning makes a difference in options the person may have as the disease leads to changes in abilities and needs.
Diagnosis is complicated and includes gathering lots of information, including:
- History of the changes
- Health history
- Medication review
- Physical exam (especially focusing on neurological and cardiovascular systems)
- Laboratory studies
- Imaging study of the brain (MRI, CT, PET)
- Cognitive assessment (what’s working well and what’s not working well)
- Emotional assessment
- Other tests (ECG, EEG etc. as indicated)
- In contrast to Alzheimer’s where other cognitive skills are affected, mild cognitive impairment (MCI) is defined by deficits in memory that do not significantly impact daily functioning. Memory problems may be minimal to mild and hardly noticeable to the individual.
- Writing reminders and taking notes allow a person to compensate for memory difficulties. Unlike Alzheimer’s where cognitive abilities gradually decline, the memory deficits in MCI may remain stable for years. However, some individuals with MCI develop cognitive deficits and functional impairment consistent with Alzheimer’s.
- Whether MCI is a disorder distinct from Alzheimer’s or a very early phase of Alzheimer’s is a topic of continuing investigation.
- The diagnosis of MCI relies on the fact that the individual is able to perform all their usual activities successfully, without more assistance from others than they previously needed.
Signs and symptoms include:
- Memory complaints include trouble remembering the names of people they met recently, trouble remembering the flow of a conversation and an increased tendency to misplace things or similar problems. In many cases, the individual will be quite aware of these difficulties and will compensate with increased reliance on notes and calendars. These problems are similar, but less severe, than the neuropsychological findings associated with Alzheimer’s disease. In some cases, the patient may have mild difficulties with daily activities, such as performing hobbies.
Progression of MCI:
- Certain features are associated with a higher likelihood of progression from MCI to Alzheimer’s. These include confirmation of memory difficulties by a knowledgeable informant (such as a spouse, child or close friend), poor performance on objective memory testing, and any changes in the ability to perform daily tasks, such as hobbies or finances, handling emergencies or attending to one’s personal hygiene.
Treatment of MCI:
- There is currently no specific treatment for MCI. As new medical interventions for Alzheimer’s disease are developed, these are likely to be tried on patients with MCI as well. If data from such trials indicates a beneficial effect in slowing cognitive decline, the importance of recognizing MCI and identifying it early will increase. However, it is important to remember some drugs may impair memory, especially in older adults.
- A general recommendation for individuals concerned about their memory would be to discuss these concerns with their significant other (friend, spouse, child, etc.), as well as their physician. Bringing the outside informant to the physician appointment is often very helpful in the evaluation process.
Alzheimer’s disease is a progressive, degenerative brain disease that slowly erodes memory and thinking skills, and eventually even the ability to carry out simple tasks. It is the most common cause of dementia. Alzheimer’s may occur in combination with vascular dementia, or other dementias.
- Vascular dementia is a subtly progressive worsening of memory and other cognitive functions due to chronic, reduced blood flow in the brain, eventually resulting in dementia. Clinically, patients with vascular dementia may look very similar to patients with Alzheimer’s, and the two diseases are very difficult to distinguish from each other. Vascular dementia may occur in with Alzheimer’s disease.
- Vascular dementia results from conditions that damage your brain’s blood vessels, reducing their ability to supply your brain with the large amounts of nutrition and oxygen it needs to perform thought processes effectively. Vascular dementia is a general term describing problems with reasoning, planning, judgment, memory and other thought processes caused by brain damage from impaired blood flow to your brain.
- You can develop vascular dementia after a stroke blocks an artery in your brain, but strokes don’t always cause vascular dementia. Whether a stroke affects your thinking and reasoning depends on your stroke’s severity and location. Vascular dementia also can result from other conditions that damage blood vessels and reduce circulation, depriving your brain of vital oxygen and nutrients.
Common conditions include:
- stroke (infarction) blocking a brain artery, narrowed or chronically blocking damaged brain blood vessels, increasing age, history of heart attack, strokes or mini strokes, atherosclerosis, high cholesterol, high blood pressure, diabetes, smoking, atrial fibrillation.
- Vascular dementia varies depending on the part of your brain where blood flow is impaired. Symptoms often overlap with those of other types of dementia, especially Alzheimer’s disease. Vascular dementia symptoms may be most clear-cut when they occur suddenly following a stroke. When changes in your thinking and reasoning seem clearly linked to a stroke, this condition is sometimes called “post-stroke dementia.”
- Another characteristic pattern of vascular dementia symptoms sometimes follows a series of strokes or mini strokes. In this pattern, changes in your thought processes occur in noticeable “steps” downward from your previous level of function, unlike the gradual, steady decline that typically occurs in Alzheimer’s disease.
- Vascular dementia can also develop very gradually, just like Alzheimer’s disease. What’s more, vascular dementia and Alzheimer’s often occur together. Studies show that people with dementia symptoms usually have brain changes typical of more than one type. Some doctors call this condition “mixed dementia.”
Vascular dementia symptoms may include:
- confusion, trouble paying attention and concentrating, reduced ability to organize thoughts or actions, decline in ability to analyze a situation, develop an effective plan and communicate plan to others, difficulty deciding what to do next, problems with memory, restlessness and agitation, unsteady gait, depression.
- Lewy body dementias include dementia with Lewy bodies (DLB) and Parkinson’s disease with dementia (PDD) and are the second most frequent cause of dementia in elderly adults after Alzheimer’s disease.
- Common symptoms include:
- problems with movement, visual hallucinations, fluctuations in thinking skills or attention, delusions, rigidity or stiffness, shuffling gait, slowness of movement, tremor, REM sleep behavior disorder: seem to act out dreams, repeated falls and syncope, transient and unexplained loss of consciousness, difficulties with depth perception, object orientation and directional sense, blood pressure fluctuations, heart rate variability, constipation, urinary problems, excessive sweating, decreased sweating/heat tolerance, dry eyes/mouth or swallowing problems
- They are often misdiagnosed, most commonly as Alzheimer’s if the person presents with memory problems, or Parkinson’s if the person presents with movement problems.
- Some people start out with movement problems (Parkinson’s) and later develop dementia (Parkinson’s dementia). Others start out with memory problems (Alzheimer’s) and over time develop features leading to the Lewy Body diagnosis. A small amount of people start with neuropsychiatric issues (hallucinations, behavioral problems, difficulty with complex mental tasks) leading to an original diagnosis of Lewy Body dementia.
- NOTE: Severe sensitivity to typical antipsychotic medications, sometimes prescribed for behaviors associated with dementia. They can cause increased problems with movement, confusion, and a syndrome causing fever, muscle rigidity and kidney failure.
Frontotemporal degeneration is a group of related conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These areas of the brain play a significant role in decision-making, behavioral control, emotion and language.
- Primary Progressive Aphasia is caused by degeneration in the areas of the brain that control speech and language. This type of aphasia begins gradually, with speech or language symptoms that will vary depending on the brain areas affected by the disease.
- Progressive Supranuclear Palsy is a degenerative disease of the brain leading to difficulties with walking and balance, problems with eye movements, changes in behavior, difficulty with speech and swallowing, and dementia.
- Corticobasal Degeneration is a progressive neurological disorder that affects nerve cells that control walking, balance, mobility, vision, speech and swallowing.
- Behavioral Variant FTD involves changes in personality, behavior, judgment. Behavior and poor judgment go unnoticed by the individual. Inappropriate and impulsive behaviors are common along with apathy and loss of initiative. Memory generally not affected.
- Mixed Dementia is a combination of two or more types of dementia. For example, Alzheimer’s disease and vascular dementia occurring at the same time.
What is early-onset Alzheimer’s?
Early-onset Alzheimer’s is an uncommon form of dementia that strikes people younger than age 65. When Alzheimer’s begins in middle age, misdiagnosis may be more likely. This rare form of Alzheimer’s affects work, finances and family.
Of all the people who have Alzheimer’s disease, about 5 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer’s, at least 200,000 people have the early-onset form of the disease. Early-onset Alzheimer’s has been known to develop between ages 30 and 40, but that’s very uncommon. It’s more common to see someone in his or her 50s who has the disease.
Some people with early-onset Alzheimer’s have the common form of the disease, and experts don’t know why these people get the disease at a younger age than others do. For most, however, early-onset Alzheimer’s runs in the family. They’re likely to have a parent or grandparent who also developed Alzheimer’s at a younger age.
Early-onset Alzheimer’s that runs in families is linked to three genes that differ from the APOE gene that can increase your risk of Alzheimer’s in general. The genetic path of inheritance is much stronger in early-onset Alzheimer’s. If you have a genetic mutation in one of those three genes — the APP, PSEN 1 or PSEN 2 — you may develop Alzheimer’s before age 65.
That’s a personal decision that only you can make. Anyone who’s considering it should pursue genetic counseling — to examine the pros and cons beforehand. For example, it may be helpful to consider how a positive test may affect your eligibility for long-term care, disability and life insurance. On the other hand, if you know you carry a form of the early-onset genes, you may be able to take steps to make it easier for you and your loved ones to cope with the effects of the disease.
There’s a perception that it does, but it’s not backed up by hard data. It depends on what endpoint you’re using in your measurement. If the endpoint is admission to a nursing home, that may occur earlier for the early-onset group — but only because their spouses or partners may have more things to deal with, such as children and jobs, than older spouses do.
For example, people who have early-onset Alzheimer’s often still have children at home. They or their spouses or partners may have elderly parents that need care, too. Often, people may find themselves overwhelmed with caring for elderly parents, the loved one with early-onset Alzheimer’s and their children all at the same time.
Fortunately, resources are available to support people with Alzheimer’s to care for themselves and function on their own as long as possible. Many resources are also available for caregivers. Support that can be essential when dealing with early-onset Alzheimer’s.
Accurate diagnosis is critical so that you can explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule. For family reasons it is even more crucial.
The diagnosis is fundamental in helping the family respond with appropriate understanding and compassion. In addition, a complete evaluation will rule out reversible forms of dementia that might improve with treatment.
Alzheimer’s disease has a tremendous impact at any age. But we don’t expect to see dementia at a young age, so problems emerging at work or home may be misunderstood. People with early-onset Alzheimer’s may lose relationships or jobs instead of being identified as medically ill or disabled.
Before your condition significantly affects your ability to do your job, talk to your employer. What you can do:
- Find out if you can switch to a position that better suits your emerging limitations.
- Familiarize yourself and your spouse, partner or caregiver with your benefits, and find out whether an employee assistance program is available.
- Explore what benefits may be offered to you under the Americans with Disabilities Act.
- If you feel overwhelmed, consider reducing your hours or taking time off.
The loss of intimacy is something poignant with early-onset Alzheimer’s. Many people who develop late-onset Alzheimer’s have already been widowed. But couples in their 40s or 50s are often in the middle of their lives together.
Spouses or partners face the possibility of spending many years without an active partner. Losing the romantic component and changing to a caregiver status complicates the relationship. Try to:
- Communicate about changes you’re experiencing and ways in which your needs also may have changed. Don’t be afraid to ask for help.
- Find new activities that you can enjoy together.
- Keep a folder of resources you may need as the disease progresses.
- Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.
A diagnosis of early-onset Alzheimer’s also can be difficult for your children, who may not understand what you may go through. Children may blame themselves, become angry or react in any number of ways. Try to:
- Find activities you can enjoy together.
- Stay engaged and talk with your children honestly about what you’re experiencing.
- Find a support group for children, and invite your kids to some of your counseling sessions. Make your child’s school counselor and social worker aware of your condition.
- Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They’ll appreciate your sharing your wisdom and memories.
People with early-onset Alzheimer’s often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers.
Some medical benefits and many social-support programs won’t provide assistance unless the person with Alzheimer’s is older than age 65. Younger people may need special waivers to get into such programs. What you can do:
- Talk with a financial planner and an attorney to help you plan for your future financial needs.
- Ask your employer whether early retirement is an option.
- Explore what benefits may be available to you through Social Security, Medicare or Medicaid.
- Organize your financial documents and make sure your spouse or partner understands and can manage your family’s finances.
Key elements of Alzheimer’s care are education and support. This is especially true given the unique social challenges of early-onset Alzheimer’s. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt.
Remember, you’re not alone. Many resources are available to assist you, your family and caregivers to cope with this disease. Options for support may vary depending on where you live.
Be sure in the early stages of the disease that you and your spouse or partner do research and establish a plan for managing the progression of your condition. Knowing you have a plan and have identified support and resources will help everyone in the future.