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Alzheimer’s disease is one of 10 types of dementia, which is any condition that results in memory loss and other changes to mental abilities. Alzheimer’s diagnoses make up between 60 and 80 percent of dementia case, making it the most common form of dementia by a large margin. Outward signs of the disease include changes in personality that progress from short-term memory loss and confusion to difficulty speaking and swallowing.

In our guide to Alzheimer’s disease, we discuss the causes and risk factors, symptoms, treatments, and management tips. We also provide resources, association contacts, support groups, current news and fundraising opportunities. The more you know and understand how Alzheimer’s disease affects your loved one, the better you can improve their quality of life, as well as your own. You can learn more by reading our articles on senior care.

Contents

Fast Facts
Auguste Deter & Dr. Alzheimer: A Brief History
Types & Stages of Alzheimer’s Disease
Causes & Risk Factors
Symptoms of Alzheimer’s: What to Look For
Treatments for Alzheimer’s
Caring For Someone With Alzheimer’s
Resources
Associations
Support Groups & Online Communities
Caregivers Support

Fast Facts

  • Over 5,000,000 Americans live with the disease
  • 1 in 3 senior citizens die of Alzheimer’s or another form of dementia
  • It kills more people than breast and prostate cancer combined
  • It’s the leading cause of death in the U.S.
  • Diagnosis requires a medical expert, but it doesn’t require lab tests or special imaging
  • There’s no known cure, but treatment can help improve quality of life and slow the progression
  • Most commonly affects people over 65, but you can be diagnosed at any age
  • Has varied progressions: From first the recognized symptom to death, it can last anywhere from a few years to over 20
  • The main symptoms are memory loss and confusion
  • Affects cognitive abilities and behavior

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Auguste Deter & Dr. Alzheimer: A Brief History

Alzheimer’s disease was never Alzheimer’s, as you might think. The disease was actually Auguste Deter’s. While this disease and other forms of dementia have existed long before there was a proper name for it, you can trace its origin to the early 20th century when Dr. Alois Alzheimer treated a patient named Auguste Deter in the City Hospital for the Mentally Ill and Epileptics in Frankfurt, Germany.

Auguste Deter: First person diagnosed with Alzheimer's disease.Prior to being admitted, Auguste led a normal life. She was a wife and a mother. But symptoms of dementia and confusion developed in her 40s. As her condition worsened, she reportedly started to stay up all night screaming and suffered from delusions. Her husband eventually couldn’t take care of her any longer and admitted her to the mental institution where she was first interviewed and studied by Dr. Alzheimer. He noted her difficulty with reading and writing, her memory problems, and signs of disorientation.

In his original notes, he writes “At lunch, she eats cauliflower and pork. Asked what she is eating, she answers spinach. When she was chewing meat and asked what she was doing, she answered potatoes and horseradish.” His initial diagnosis was pre-senile dementia. A common, though vague, diagnosis for similar cases of dementia at the time.

Her condition worsened, and by 1906, she passed away at the age of 55. Following her death, Dr. Alzheimer requested her brain for autopsy. When he examined it, he found shrinkage in her brain with abnormal deposits in and around nerve cells. He later presented the results to the South-West German Society of Alienists, where he described the abnormal deposits as neurofibrillary tangles and amyloid plaques – these have become synonymous with the disease.

However, Dr. Alzheimer never named the disease. That credit goes to another German physician, Emil Graepelin, who worked alongside Dr. Alzheimer at the Royal Psychiatric Clinic in Munich. He referenced the disease by calling it “Alzheimer’s disease” in the eighth edition of his book “Pyschiatrie,” and the name stuck.

Dr. Alzheimer’s close clinical relationship with Auguste Deter, both before and after her death, is widely considered to have set the standard for studying and understanding neurodegenerative disorders. He was able to connect psychiatric illnesses to physical changes in a person’s brain. It’s a standard that still drives the ongoing research of this and other similar diseases.

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Types & Stages of Alzheimer’s Disease

While everyone with Alzheimer’s disease expresses the same symptoms – memory loss, confusion, trouble with familiar tasks, etc. – it progresses in different ways. The disease occurs in the brain when abnormal deposits of beta-amyloid plaque and twisted strands of the tau protein start to destroy the connections between synapses and neurons. Without that connection, information can’t be connected or accessed. It mostly affects memory, but it can also affect language and motor skills, especially as the disease progresses.

In some people, the disease doesn’t start to express itself until much later in life and can progress very quickly from when the first symptom presents. Other people receive an early diagnosis, and the disease progresses slowly over decades. According to WebMD, there are three types of Alzheimer’s:

Early Onset Alzheimer's Disease
To be diagnosed with early onset Alzheimer’s, you have to start exhibiting symptoms before you turn 65. As with Auguste Deter, the disease usually starts to show in your 40s or 50s. This diagnosis is rare, as less than 10 percent of people with the disease are diagnosed in the early onset stage.

People with Down syndrome have a higher risk for early onset Alzheimer’s, as do people with a genetic predisposition caused by a defect in chromosome 14.

Late-Onset Alzheimer's Disease
This is the most common form of Alzheimer’s disease. To be diagnosed with late-onset Alzheimer’s, you have to be over 65 years old. This form of the disease isn’t necessarily genetic. There’s no known reason for late-onset Alzheimer’s, as researchers have yet to link it to any genetic defect. It may simply be the natural result of aging for many people.

Familial Alzheimer's Disease (FAD)
To be diagnosed with Familial Alzheimer’s disease, your doctor must be certain that the disease is linked to your genetic makeup. As such, this is the least common diagnosis, making up less than 1 percent of all cases. People diagnosed with FAD generally start to show symptoms in their 40s.

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Causes & Risk Factors

The Alzheimer’s Disease Education and Referral Center admits that scientists don’t yet fully understand what causes Alzheimer’s disease in most people. This makes it very difficult to know what the risk factors are and how to avoid them. However, the two most common causes are age and genetics, and the two most common risks are lifestyle factors and family history.

Age
As you age, every part of your body slowly becomes less efficient. Muscles become weaker. Organs start failing. And the brain is no different. As such, it’s no surprise that the vast majority of people diagnosed with this disease are over 65 years old. The older you are, the greater your risk for a diagnosis of Alzheimer’s or some other form of dementia. It is rare to be diagnosed with this disease at a young age, though it does happen.

Health, Environment & Lifestyle Factors
If you want to keep your body healthy as you age, you eat properly, exercise regularly and get plenty of rest. The same applies to your brain. If you want to minimize the risk of age-related Alzheimer’s disease, you need to take care of your mind and body. Stay active, both physically and mentally. Do puzzles, and keep reading – it’s important to keep those synapses firing by challenging yourself. Avoid activities with a risk of head trauma, as a history of concussions puts you at a high risk for Alzheimer’s.

Genetics
For some, the risk of being diagnosed with Alzheimer’s is found in their genes. People with an apolipoprotein (APOE) gene, which has many different forms, are at a higher risk for late-onset Alzheimer’s. Carrying this gene doesn’t guarantee a diagnosis later in life, but it does mean you have a greater chance of it.

Family History
Your family’s history with Alzheimer’s and other forms of dementia can be a sign that you have a higher risk of developing the disease. In most cases, a family history of Alzheimer’s disease reflects a genetic cause, but it could also reflect environmental issues shared by your family through the generations.

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Symptoms of Alzheimer’s: What to Look For

The sooner your loved one is diagnosed, the better chance they have of treating the symptoms and slowing the progress of the disease. Below are the most common symptoms displayed by people in the early stages of Alzheimer’s, according to the Alzheimer’s Association:

Memory Loss That Disrupts Daily Life
The most common symptom of Alzheimer’s is memory loss. It typically affects short-term memory first. You might recognize that your loved one has trouble remembering recently learned information or important dates. They might start asking you the same questions over and over again.

Challenges in Planning or Solving Problems
Alzheimer’s disease affects a person’s ability to focus their thoughts. Just try to imagine what it would be like having your short-term memory reset often – it would be difficult to keep your mind focused on specific tasks. This is often expressed in the person’s difficulty with simple planning and problem solving such as when tracking bills or following directions.

Difficulty Completing Familiar Tasks
If your loved one is struggling to complete tasks that typically require little conscious effort, it could be a symptom of the onset of Alzheimer’s disease. The task should be common and simple – a task that they shouldn’t have any problem completing. For example, they could be unable to get the mail, operate the oven or make coffee. If they start to have problems completing these tasks, experts suggest arranging a memory test.

Confusion With Time or Place
The memory problems associated with the disease can create intense confusion. This can express itself as questions of time or place. Since long-term memory isn’t affected as much as short-term memory, especially in the early stages of the disease, your loved one might grasp onto old memories to fill in the context of the short-term circumstance, which have been lost in the confusion. This may result in them thinking it’s a different year or different place than the present circumstances.

Repetitive Behaviors
Memory loss is the most common symptom of Alzheimer’s disease. As such, repetitive behavior is common. Sometimes this is simply because the person doesn’t remember performing the task, so they do it again. For example, they may clean the same dishes over and over again or feed the dog multiple times in an hour.

However, repetitive behavior can also be attributed to boredom or a strong desire to ground themselves while suffering an anxiety attack. For example, they might pace or open and close a drawer repeatedly not because they don’t remember, but because the act is something tangible they can do when they’re feeling confused, anxious or bored.

Problems With Words in Speaking or Writing
Alzheimer’s can affect the language center of the brain, making it difficult for your loved one to follow conversations or express themselves adequately. In the early stages, this presents itself in subtle ways, but it can lead to great frustration. After struggling to find the words for something, they may use other words to describe it, e.g. calling a “watch” a “hand clock.” Of course, it’s important to note that this isn’t necessarily a problem, as many people without Alzheimer’s express themselves in strange ways when they can’t find the right words. However, it does become an issue when it seems out of character.

Taking Shorter Steps & Decreased Fine Motor Skills
When you perform the same tasks over and over again, you develop muscle memory. Your brain works in conjunction with the activity to the point that it requires little conscious effort – buttoning a shirt, tying shoes, walking, etc. These are tasks that you just do without thinking. However, since Alzheimer’s disease affects memory, struggling with fine motor skills, such as buttoning a shirt, can be a symptom. That said, trouble with motor skills can also be associated with other diseases such as Parkinson’s.

According to studies presented at the Alzheimer’s Association International Conference, changes in a person’s gait can also predict Alzheimer’s disease. If the way your loved one walks changes or deteriorates, with shorter steps and more shifting from side to side, it could be sign of Alzheimer’s.

Poor Judgement
This is another symptom that is only a concern if it’s out of character. Some people have a long history of making poor decisions – giving large amounts of money away to strangers, falling for scams, etc. But if it’s atypical behavior for your loved one, then it’s likely that Alzheimer’s is affecting their judgement.

Getting Lost & Wandering
Alzheimer’s disease has long been associated with getting lost or wandering. According to the Alzheimer’s Association, six out of 10 people with the disease will wander. This is due to strong feelings of confusion. They may not remember their address or where they are. The wandering occurs as a way of trying to go home, but they often don’t know where home is, even when they are home.

Loss of Interest & Withdrawal
People with Alzheimer’s disease often show a lack in interest and motivation, which is the result of the disease affecting their ability to focus on tasks. When they struggle to focus, they typically withdrawal from their hobbies, social activities, projects and work. They might start napping a lot during the day and generally display symptoms of clinical depression.

Insomnia
Since Alzheimer’s affects a person’s sense of time, it can cause significant problems with their sleep patterns. They may have bouts of insomnia largely caused by too much daytime napping. This is called Sundowner’s Syndrome.
It should be noted that sleep patterns often change with age, even with healthy senior citizens, so insomnia may not be a symptom of Alzheimer’s. However, if they don’t remember taking naps during the day, then you may want to consult with a physician.

Changes in Mood & Personality
Alzheimer’s disease can change a person’s personality dramatically. Most diversions are negative, often including increased confusion, suspicion, paranoia, depression, fear and anxiety, and they may become upset more often.

Poor Grooming, Hygiene & Dressing Habits
Alzheimer’s disease can affect grooming and hygiene habits for several reasons. It could be that your loved one simply forgot to brush their teeth or shower. But grooming problems can also be the result of a lack of interest or a lack of motor skills.

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Treatments for Alzheimer’s

While there is no cure for Alzheimer’s disease, you can treat it to slow its progress. There are also things you can do to provide a higher quality of life for your loved one for as long as possible. Below are some of the current treatment options, according to the Alzheimer’s Association:

Medications
Alzheimer’s disease attacks the brain by disrupting the connections between the neurons and synapses. Eventually, the disease destroys the neurons and synapses, which in turn keeps the different parts of the brain from communicating. Alzheimer’s medication works to treat the disease in two ways: The most common drug is a cholinesterase inhibitor that slows down the process of neurotransmitter breakdown. The second drug is memantine, which regulates the activity of glutamate in the brain; this helps minimize the destruction of the neurons and synapses.

The FDA has approved five medications for Alzheimer’s disease: Aricept, Razadyne, Namenda, Exelon and Namzaric. Each medication is best for specific stages of the disease, from early onset to severe. You should consult with your doctor about which drug is appropriate.

Non-Medical Treatments
In the article, “Non-Medical Therapies for Alzheimer’s,” Dennis Thompson Jr. says that “sometimes the best way to help an Alzheimer’s patient better enjoy life is to reach past the mind and touch the heart.” While that may sound sentimental to some, it does have scientific basis. Just because the mind is deeply affected by the disease doesn’t mean that your loved one doesn’t still feel positive emotions.

Thompson argues that adding music, art, pets and a variety of non-medical therapies can go a long way to help alleviate the anxiety, stress and depression caused by Alzheimer’s. Music therapy, he adds, is a very common form of therapy because music makes a strong link to memories in a way that allows your loved one to reminisce in a non-stressful way. Music also affects mood. An upbeat song can lift a person’s mood, while a slow song can help them relax.

Art is another non-medical therapy that can greatly improve your loved one’s quality of life. It allows them to articulate themselves in ways that may not be possible with language. It also stimulates their imagination, which can boost their self-esteem.

Treatments for Sleep Changes
Sleep issues are a common with Alzheimer’s patients. While sleep medication can be prescribed to help, it’s also important to maintain a daily routine, especially in the evening. Rigid routines provide stability and can cue your loved one that the day is winding down, preparing them for sleep. You should also discourage afternoon napping.

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Caring for Someone With Alzheimer’s

Caring for a loved one with Alzheimer’s disease is no easy task. It comes with the responsibility of balancing their routine, therapy, behavior and medications, all with their highest quality of life in mind. You have to take care of their hygiene and grooming, keep them from hurting themselves, and calm anxiety attacks caused by confusion.

According to the BrightFocus Foundation’s Disease Toolkit on Being a Caregiver, you need to start by giving yourself permission to be human. It’s important to recognize that you’re not perfect. You’re going to make mistakes. This is a learning process, and it will always be a learning process. The article goes on to suggest that it’s okay to do the following:

  • Be angry: Just make sure you focus the negative emotion into something positive like cleaning the kitchen or exercise.
  • Be frustrated: People with Alzheimer’s can be unpredictable and stubborn. It’s only natural to feel frustrated.
  • Take time out: You need your own space from time to time. That’s totally fine. You can take a trip to the store, walk around the block or simply go into another room.
  • Ask for help: The world is full of resources for caregivers. Talk to your physician. Consult with associations and social networks. Talk to your friends and family.
  • Recognize your limits: You need to take care of yourself first. Your quality of life and health matter too.
  • Make mistakes: You’re going to make mistakes. It’s okay. Learn from them.
  • Grieve: It okay to mourn the person you used to know.
  • Laugh and love: Life without humor is hardly living. It’s important to laugh and to love.
  • Hope: If today is hard, it doesn’t mean that tomorrow will be harder. You should hold onto that hope.

Reducing Your Stress as a Caregiver

Taking care of your loved one with Alzheimer’s might be the most stressful responsibility of your life. If you don’t take measures to alleviate the stress of it, your own quality of life and health are at risk, which does no good for your loved one.

As such, it is perhaps more important as a caregiver than during any other time in your life to manage your stress. Find time each day to relax. Make sure you have a hobby and stick to it. Make a list of tasks that need to be completed. Keep a journal. Laugh more often. Exercise often and get plenty of rest.

You can also hire part-time hospice care to watch your loved one while you go out, and you should never feel guilty for leaving them with someone else.

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Resources

General:

Helpful Resource for People Living with Alzheimer’s Disease: A list of professional resources and organizations devoted to helping people with Alzheimer’s Disease.

Alzheimer’s: What Every African-American Needs to Know: A video that discusses the impact of Alzheimer’s on the African-American community.

Early-Onset Alzheimer’s Disease: A Resource List: A resource list published by the National Institute on Aging.

For Caregivers:

Relieving Stress & Anxiety: Tips and resources for caregivers to relieve the stress of taking care of someone with Alzheimer’s.

Caregiver Resources: Published by Alzheimers.gov, this is a list of articles and organizations to help caregivers.

Mixed:

Alzheimer’s Disease: Incredibly Useful Web Sites on Alzheimer’s Disease: A short PDF published by the Alzheimer’s Association with useful websites for families, educators and students looking to learn more about this disease.

By stage:

Stages of Alzheimer’s Disease: Incredibly Useful Web Sites: A short PDF published by the Alzheimer’s Association featuring websites related to the various stages of this disease.

Safety:

Safety and Alzheimer’s Disease: Incredible Useful Web Sites: Another short PDF published by the Alzheimer’s Association with helpful websites related to safety.

Drugs:

Drugs: Incredible Useful Web Sites: Another short PDF published by the Alzheimer’s Association with helpful websites related to safety.

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Associations

Alzheimer’s Association
225 North Michigan Avenue
Floor 17
Chicago, IL 60601-7633
info@alz.org
http://www.alz.org
Tel: 312-335-8700; 800-272-3900
(24-Hour Helpline); 312-335-5886 (TDD)
Fax: 866.699.1246

 

Alzheimer's Foundation of America
322 Eighth Avenue
7th Floor
New York, NY 10001
info@alzfdn.org
Tel: 866-AFA-8484 (232-8484)
Fax: 646-638-1546

Alzheimer's Disease Education
and Referral Center (ADEAR)

National Institute on Aging
P.O. Box 8250
Silver Spring, MD 20907-8250
adear@nia.nih.gov
Tel: 1-800-438-4380
Fax: 301-495-3334

 

BrightFocus Foundation
22512 Gateway Center Drive
Clarksburg, MD 20871
info@brightfocus.org
Tel: 1- 800-437-2423
Fax: 301-258-9454

John Douglas French Alzheimer's
Foundation

11620 Wilshire Blvd.
Suite 270
Los Angeles, CA 90025
Tel: 310-445-4650
Fax: 310-479-0516

Lewy Body Dementia Association
912 Killian Hill Road, S.W.
Lilburn, GA 30047
lbda@lbda.org
Tel: 404-935-6444; 800-539-9767
Fax: 480-422-5434

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Support Groups & Online Communities

Alz Connected: A free online community for everyone affected by Alzheimer’s or another form of dementia.

AgingCare.com’s Alzheimer’s & Dementia Support Group: Get the answers and support from those facing the challenges of caring for a loved one with Alzheimer's or dementia. Ask your questions and get helpful answers from caregivers and memory care experts.

ALZTalk.org: A forum for caregivers, treatment, research and support.

Alzheimer’s Society: Talking Point: This forum is a place for anyone affected by dementia to introduce themselves, ask for advice, share information, join in discussions and feel supported.

Alzheimer’s Association Support Groups by State: Offers peer- or professionally led groups for caregivers and others dealing with Alzheimer's disease. All support groups are facilitated by trained individuals. Many locations offer specialized groups for children, individuals with younger-onset and early stage Alzheimer's, adult caregivers and others with specific needs.

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Caregivers Support

Fisher Center Foundation’s Caregiver’s Corner: This is a resource for support, training and educational resources for caregivers.

Family Caregiver Alliance: A support group just for caregivers.

Caregiving Network: A website devoted to caregiving tips, advice, research and support.

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