What You Know Makes a Difference
There may be as many as 5.3 million people with Alzheimer’s disease living in the United States. But if you care for someone with Alzheimer’s or another dementia, your person is more than a number. Here’s help, for you and the person with dementia.
What you need to know. . . .
The term “dementia” describes a progressive, degenerative decline in cognitive function that gradually impairs memory and the ability to learn, reason, make judgments, communicate and carry out daily activities. Dementia itself is not a disease but a broader set of symptoms that accompanies certain diseases or physical conditions. Dementia can be caused by a number of different conditions; it is a symptom of neurodegenerative diseases like Alzheimer’s, frontotemporal dementia or corticobasal degeneration. Other physical conditions may cause or mimic dementia, such as depression, brain tumors, head injuries, nutritional deficiencies, hydrocephalus, infections (AIDS, meningitis, syphilis), drug reaction, and thyroid problems. While it often includes memory loss, memory loss by itself does not mean that a person has dementia. Dementia affects 17-25 million people worldwide.
Individuals experiencing dementia-like symptoms should undergo diagnostic testing as soon as possible. An early and accurate diagnosis helps to identify reversible conditions, gives patients a greater chance of benefiting from existing treatments, and allows them and their families more time to plan for the future.
Alzheimer’s Disease is the most common of the dementias. It 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 other types of dementia. At least 50% of those with AD are not yet diagnosed.
The changes caused by Alzheimer’s disease 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 AD.
Frontotemporal Dementia (FTD)
Frontotemporal dementia 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, behavior verbal control, emotion and language. Common forms of FTD:
Primary Progressive Aphasia (PPA)
PPA 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 of the brain areas affected by the disease.
Progressive Supranuclear Palsy (PSP)
PSP 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 (bvFTD)
Behavioral Variant FTD involves changes in personality, behavior and judgment. Behavior and poor judgment go unnoticed by the individual. Inappropriate and impulsive behaviors are common along with apathy and loss of initiative. Memory is generally not affected.
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 older adults. Common symptoms include problems with movement, visual hallucinations, and fluctuations in thinking skills of attention.
- It is not the same as Alzheimer’s disease -some similar symptoms, others are very different
- Early symptoms are frequently be missed or misunderstood, even by medical professionals.
- The use of certain medications (anti-psychotics, anti-anxiolytics, sleep aids, Parkinsonian meds) needs to be more carefully considered, due to possible very serious side-effects for people with DLB
- Progression of DLB may look very different than other forms of dementia.
- It is possible to have a combination of DLB and other dementias, especially common is DLB plus Alzheimer’s Disease.
- It can begin at much younger ages than typical Alzheimer’s (50-55 versus over 70)
- It may look more like Parkinson’s Disease than a traditional dementia
- It will seem to ‘come and go’ in early stages, you may wonder if you are imagining things.
- Unexplained rigidity, falls, loss of consciousness, or problems with hand use, or difficulty swallowing are often the first symptoms noticed, combined with episodes of visual hallucinations or delusions. New learning and memory problems are generally not the first problems noted.
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 with Alzheimer’s dementia.
Multi-infarct dementia (MID), or vascular dementia is is a deterioration of mental capacity caused by multiple strokes (infarcts) in the brain. These events may be described as mini strokes, where small blood vessels in the brain become blocked by blood clots, causing the destruction of brain tissue.
The onset of MID may seem relatively sudden, as it may take several strokes for symptoms to appear. These strokes may damage areas of the brain responsible for a specific function as well as produce general symptoms of dementia. As a result, MID is sometimes misdiagnosed as Alzheimer’s disease.
MID is not reversible or curable, but detection of high blood pressure and other vascular risk factors can lead to a specific treatment that may modify MID’s progression. MID is usually diagnosed through neurological examination and brain scanning techniques, such as a computerized tomography (CT) scan or magnetic resonance imaging (MRI).
- It is not the same as Alzheimer’s disease
- It has different causes and there are different types
- The risk of progression can be reduced
- It can look very different for different people
- Medical management will be different than for Alzheimer’s disease
Early signs might include: • 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
Common Symptoms and Changes
- Mood: defensive, depressed, impulsive or indecisive
- Mobility: impacted usually later in the disease
- Getting lost
- Making mistakes with words, finances, decisions
- Understanding: difficult to interpret information, gets “off target” easily
- Language issues: word finding difficulty
- Sensory changes
- Changes depend on where in the brain damage occurs so each person and each disease is different
- Changes are often sudden, inconsistent and less predictable
Dementia with Lewy Bodies
- Fine motor changes: using hands, swallowing
- Mobility problems: rigidity, tremor, falls, periodic limb movements
- Fluctuations in abilities and function
- Memory inconsistent
- Attention/executive function
- Visual/Spatial changes
- Impulse and behavior control
- Disinhibition ( food, drink, sex, emotions, actions)
- OCD type behaviors
- Temporal-language loss: cannot speak, cannot understand what is said
- Frequently occurs in younger people (50’s, 60’s)
Normal aging includes: Being more forgetful…for you Taking longer to learn new information…again for you Requiring more practice to learn new skills or technologies (you can do it, just have to try harder than earlier) Having more trouble recalling people’s names (more than you used to have) Knowing the word you want but hesitating (different for you).
1. Aging happens to everyone. Dementia is ALWAYS a disease; it DOESN’T happen to everyone.
2. 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.
3. Forgetful people can use reminders, calendars, lists and to be able to DO. With most dementias, these prompts CAN’T help after the earliest stages.
4. Being forgetful makes an independent life difficult; having dementia makes independent life impossible.
Diagnosing Alzheimer’s Disease
Alzheimer’s disease can be definitively diagnosed only after death, by linking clinical measures with an examinations of brain tissue and pathology in an autopsy. But doctors now have several methods and tools to help them determine fairly accurately whether a person who is having memory problems has “possible Alzheimer’s dementia” (dementia may be due to another cause) or “probably Alzheimer’s dementia” (no other cause for dementia can be found).
To diagnose Alzheimer’s, doctors may:
- Ask questions about overall health, past medical problems, ability to carry out daily activities, and changes in behavior and personality
- Conduct tests of memory, problem solving, attention, counting, and language
- Carry out standard medical tests, such as blood and urine tests, to identify other possible causes of the problem
- Perform brain scans, such as computed tomography (ST) or magnetic resonance imagine (MRI), to distinguish Alzheimer’s from other possible causes for symptoms, like stroke or tumor
These tests may be repeated to give doctors information about how the person’s memory is changing over time.
Early, accurate diagnosis is beneficial for several reasons. It can tell people whether their symptoms are from Alzheimer’s or another cause, such as stroke, tumor, Parkinson’s disease, sleep disturbances, side effects of medications, or other conditions that may be treatable and possible reversible.
Beginning treatment early on in the disease process can help preserve function for some time, even though the underlying disease process cannot be changed. Having an early diagnosis also helps families plan for the future, make living arrangements, take care of financial and legal matters, and develop support networks.
In addition, an early diagnosis can provide greater opportunities for people to get involved in clinical trial, scientists test a drug or treatment to see if that intervention is effective and for whom it would work best.
-Alzheimer’s Disease Education & Referral (ADEAR) Center, A Service of the National Institute on Aging, National Institutes of Health
Early Detection and Treatment
Mild Cognitive Impairment (MCI) is a cognitive state where the individual has had more decline than would occur with normal cognitive aging, but is less than the decline seen with dementia. With MCI, the individual is often aware of the decline, but has not yet experienced the functional consequences that significantly interfere with everyday life.
Everyone who has Alzheimer’s dementia (AD) had MCI first, but in most cases they weren’t aware of it. This is the critical point for diagnosis and intervention.
Researchers are working hard to develop a number of different ways to predict who will develop AD, and ideally to identify them before they have AD (ideally at the stage of MCI or sooner).
Considerable research has focused on identifying a number of biomarkers (including specific genetic risk factors) that make one more susceptible to developing AD. Ultimately, however, the diagnosis comes from an assessment of the individual’s cognitive and functional abilities, most typically in the form of neuropsychological tests.
The importance of early detection is that, at this time, there is no way to reverse the effects of AD. So the only alternative is to slow the progression before it occurs. Therefore, the sooner it is diagnosed, the sooner the intervention can occur.
There are four approaches for potentially improving the lives of those with MCI and AD.
- Diet: Research has shown that the MIND diet (a Mediterranean diet combined with a diet to reduce hypertension) can have substantial effects on slowing cognitive decline.
- Physical exercise that is appropriately geared to your physical health can also minimize cognitive decline.
- Mental exercise involves challenging your mind.
- Pharmacological management using a cholinesterase inhibitor (e.g. Aricept, Exelon, Razadyne) and/or neural protector (e.g., Namenda).
The major risk factor for Alzheimer’s dementia is age. MCI is also a risk factor for developing Alzheimer’s dementia (In contrast to Alzheimer’s dementia where other cognitive skills are affected, 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). Other risk factors:
- Atherosclerosis (fats and cholesterol, lining of arteries and inflammation). Low density lipoprotein (LDL; “bad” cholesterol). This raises the risk for vascular dementia and Alzheimer’s dementia.
- Poorly controlled diabetes
- Poorly controlled hypertension
- Head injuries, especially with loss of consciousness
- Alcohol use (large amounts = high risk)
Engaging the mind: Regular mental exercise is thought to enhance neurogenesis. Emerging data suggest effects similar to low dose pharmacological interventions.
Physical Exercise: Physical exercise increases protection of brain cells (neurons) and increases production of new brain cells.
Diet: Eating healthy foods has been found to be protective for brain health. Specifically, diets such as the “MIND” diet (Mediterranean-DASH) is a dietary intervention for neurodegenerative disease. This diet is a combination of the Mediterranean diet and one developed for cardiovascular health (DASH: Dietary Approaches to Stop Hypertension).
This 15 component diet is divided into two groups:
10 are “brain healthy food groups”: Green leafy vegetables, nuts, berries, beans, whole grains, fish, poultry, olive oil, red wine and
5 are considered the “unhealthy groups”: red meats, butter/margarine, cheese, pastries, sweets, fried or fast food.
Diagnosis Makes a Difference!
Early diagnosis is important and accurate diagnosis is critical!
- Early treatment has been shown to produce improved results than waiting until later in the disease progression.
- Early and accurate diagnosis allows for better planning and the opportunity to include the person with dementia in the decision process.
- Early planning makes a significant difference in the options a person may have as the disease leads to changes in abilities and needs.
What You Do Makes a Difference!
What YOU do makes a difference…to the person with dementia… to your other partners in the journey of caring…to your community and…to those who come after you.
Accepting the Challenge
Our training DVD, Accepting the Challenge, is a multi-disciplinary training program used throughout the world to help both professional and family caregivers provide the best dementia care possible. Its content, divided into 4 modules, provides interactive classroom lectures and demonstrations including interactions with people with dementia. The DVD continues to be marketed and sold to professionals through Health Professions Press. www.healthpropress.com.
After completing the training DVD, please click here to fill out the form to receive continuing education credit.