Frequently Asked Questions

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Is Alzheimer's disease Alzheimer's disease
A neurological disease that affects memory and behaviour. It is characterized by beta-amyloid plaques and neurofibrillary tangles in the brain. There is no known cause but genetics and lifestyle are thought to play a role. the same as dementia?
Is Alzheimer's disease inherited?
Does Alzheimer's disease occur in younger adults too?
Can people die from Alzheimer's disease?
Do people with Alzheimer's disease also get depressed?
The person I care for tends to wander off and quite often gets lost. Is there anything I can do?
Is there a cure for dementia? Is dementia reversible?
Why don't all the symptoms get better at once?
How can I help with research on dementia?
We just received our diagnosis Diagnosis
The process by which a physician determines what disease a patient has by studying the patient’s symptoms and medical history and by analyzing any tests performed (blood, urine, brain scans, etc.).. What do we do now?

Is Alzheimer's disease the same as dementia? Back to top

The term "dementia" refers to a syndrome, which is a collection of symptoms and signs. Symptoms are things that people complain about, whereas signs are things that physicians observe in patients. Dementia is the syndrome in which people have memory Memory
The ability to process information that requires attention, storage, and retrieval. problems, as well as problems with other things that the brain controls, such as language, or paying attention. These problems should be acquired (opposed to being present on a lifelong basis) and progressive Progression
A disease that is increasing in severity; going from bad to worse over time.. They should also be severe enough that they interfere with a person's ability to hold a job, or function the way they used to.

The syndrome of dementia has many causes, but the most common cause is Alzheimer's disease. Other causes of dementia are dementia after strokes a type of dementia like Alzheimer's disease known as dementia with Lewy bodies Lewy bodies
Round clumps of protein found in the brain's neurons in many people who experience a neurodegenerative disorder. and a collection of dementias known as the frontotemporal dementias.

Is Alzheimer's disease inherited? Back to top 

Every illness in life is a product of genes and environment. As a result, all illnesses are, to some extent or another, inherited. With Alzheimer's disease, some cases are strongly genetically inherited, while others are not. In general, of all people who visit a memory clinic with Alzheimer's disease, only about 5% will have the strongly inherited form.

Does Alzheimer's disease occur in younger adults too? Back to top 

Yes, however most people diagnosed with Alzheimer's disease are older than 65. This is called "early-onset" and it represents less than 10% of Alzheimer's disease cases

Can people die from Alzheimer's disease? Back to top 

While Alzheimer's disease is considered a terminal illness, people who are diagnosed can live from 2 - 20 years with the disease. Over time, Alzheimer's diseases causes damage to the brain, which in turn can results in increased complications (i.e., inability to eat, increased susceptabillity to infection). Thus, Alzheimer's disease can result in death.

Do people with Alzheimer's disease also get depressed? Back to top 

Scientists have known for a long time that depression Depression
A disorder where a person experiences a constant state of sadness and low mood which interferes with their daily activity. and dementia are linked. Especially during the 1970s, when there was a lot of emphasis on so-called "reversible dementia," it was often held that depression had to be "ruled out" (including by a trial of antidepressants) before dementia could be diagnosed. Now, however, although the jury is still out, many experts feel that being depressed can increase the risk of dementia.

Depression can also exist together with Alzheimer's disease, including in people who become depressed for the first time when they are diagnosed. It seems two issues are at work here. One is that for some people, the diagnosis of such an illness is enough to trigger depression. The other is that the disease appears to affect brain chemicals Brain chemicals
Chemicals released by the neurons in the brain in order to communicate. causing depression. Exactly how to treat depression in someone who also has Alzheimer's disease is not clear, but in general, drugs that depress the amount of the brain chemical acetyl choline Acetyl choline
A neurotransmitter released in synapse that is active in the transmission of nerve impulses. should be avoided.

For an in-depth, up to date review of this question, it is covered in the chapter by David M. Blass and Peter V. Rabins "Lessons from trials of psychotropic Psychotropic
A drug that effects the mind, emotions and behaviours of a person. agents in Alzheimer disease" in the book Trial Designs and Outcomes in Dementia Therapeutic Research by Kenneth Rockwood and Serge Gauthier.

The person I care for tends to wander off and quite often gets lost. Is there anything I can do? Back to top 

Safely Home in Canada, and Safe Return in the United States are examples of programs that are designed to help in situations like this. These programs are nationwide and involve the person wearing an identification bracelet. For more information on these programs please visit: http://www.alzheimer.ca/english/safelyhome/feature.htm (in Canada) or http://www.alz.org/we_can_help_safe_return.asp (in United States).

If you are outside these areas, please speak to a representative at your local Alzheimer Society/Association for more information about resources available in your area.

In the meantime, try thinking about the reasons why the person you care for is wandering?

• Have they always enjoyed walking?
• Is it possible that they trying to maintain their independence?
• Could they be feeling lost and in need of a familiar place or person?
• Perhaps they are bored and are looking for something to pass the time?

Considering an underlying reason for the persons wandering might help to determine how to deal with this situation. We suggest you look up Wandering in DementiaGuide's Symptom Library for tips on managing this stressful symptom.

The idea of reversible dementia was very popular during the 1970s in particular. Given observations that some people have depression which looked like dementia, and that depression got better after treatment with anti-depressants, and other observations of improvement in cognition Cognition
The mental processes associated with knowing and understanding thoughts and perceptions about one's environment. after treatment for thyroid disease Thyroid disease
A disease which is caused by a problem with the thyroid gland and the hormones that the gland produces. or B12 deficiency Deficiency
A shortage of a substance needed by the body., there is a lot of enthusiasm that dementia could be made to reverse. While this does happen occasionally, it is very uncommon.

Why don't all the symptoms get better at once? Back to top 

Sometimes the people who care for those with Alzheimer's disease are surprised at how some symptoms can show so much improvement, while others seem to be staying the same or getting worse. How symptoms work in Alzheimer's disease is complicated. While it is generally true that a lot of symptoms come about because of a decrease in the brain chemical acetyl choline, not all of the symptoms do. Because of this, there are some symptoms which simply will not respond to changes in acetyl choline. Of course the situation is more complex. The brain can adapt and get used to having lower levels of acetyl choline. When a drug is introduced to raise the level of acetyl choline, the brain then has to adapt all over again to the new increase amount of neurotransmitter Neurotransmitter

A specialized chemical messenger such as acetyl choline, that sends a message from one nerve cell to another. Neuortransmitters are responsible for the communication within the brain and also between the brain and other parts of the body.

A striking example of this is sometimes seen in patients who have dementia with Lewy bodies Dementia with Lewy Bodies
See Lewy body disease.. In dementia with Lewy bodies, people have a mixture of low acetyl choline and low dopamine Dopamine
A neurotransmitter found in the brain that has been associated with Parkinson's disease.. Dopamine in Parkinson's disease Parkinson's disease
A progressive, neurodegenerative disease characterized by the death of neurons in the brain. The disease has been linked to a lack of the neurotransmitter dopamine which has consequences such as tremors, speech impediments, movement difficulties, and often dementia later in the course of the disease. and other types of Parkinsonism Parkinsonism
When you have a disorder other than Parkinson's, which features motor impairments similar to those experienced in Parkinson's disease. They are usually still related to problems with the amount of the neurotransmitter dopamine. In some people with Lewy body dementia, giving a drug that increases the amount of acetyl choline actually makes their Parkinsonism worse. This is because Parkinsonism sometimes comes about not just as a result of the absolute amount of dopamine, but the amount of dopamine in relation to acetyl choline. Thus, increasing the acetyl choline has an effect similar to lowering the amount of dopamine. Puzzlingly however, the response in dementia with Lewy bodies is very variable, so that in some people Parkinsonism gets better and in others Parkinsonism gets worse.

How can I help with research on dementia? Back to top  

There are many ways to help with research on Alzheimer's disease. The Alzheimer's Association of the United States and the Alzheimer Society of Canada are two examples of fine national organizations that are well setup to receive research donations. One advantage of donating money to these associations is that it is well accounted for and it is only distributed to projects that are judged by other scientists to be worthy of research. Sometimes however, people prefer to give closer to home and it is likely that if you live in an area with a medical school there will be someone there doing research on Alzheimer's disease. Often tax-receiptable donations can be made to the donation's office of the university; for example, the Geriatric Medicine Research Unit (www.cdha.nshealth.ca) is also very keen on donations.

Another way to help is to be a volunteer for studies. Most clinical research centers are glad to hear from people with Alzheimer's disease, or from people over the age of 65 who do not have any impairment in cognition. Alzheimer's disease is often studied in animals, but many studies can only be done in humans.

We just received our diagnosis. What do we do now? Back to top 

People who are diagnosed with Alzheimer's disease often get two pieces of advice, each helpful but each limited. One is to try your best to plan for the future and the other is to live day by day.

Planning for the future is always wise. As soon as the diagnosis is made there are a number of questions that will come up. At the same time, it is important to realize that this is not an emergency and that things will not dramatically change overnight. Still, it is sensible to plan for things such as putting in place a power of attorney Power of attorney
A written legal document that gives someone the authority to act on another person's behalf., a living will Living will
A legal document that expresses an individual’s decision on the use of artificial life support systems. or other type of future health care directive. It is also worthwhile to make decisions about how finances are to be handled. Driving is a question that will inevitably arise and it is best to plan for it.

A person with Alzheimer's disease is going to want to know how the future is likely to change- what is the chance of a good response with treatment? What is the chance things will get worse? In truth, a lot of this is unknowable for the individual and the best we have to offer is statistical advice. It often takes 3-6 months before any firm decision can be made about how responsive treatment will be, so again there is the question of uncertainty.

This is where the second piece of advice "live a day at a time" comes in. People with Alzheimer's disease are no different from anyone else and certainly not different from how they were before the diagnosis. They want very much the same things. At the same time a worry for the future can impair their ability to appreciate each day. That is why it is important to savor the good health of each day and be aware of each day's blessings.

One thing that happens sometimes is that people with Alzheimer's disease lose the ability to think of themselves in the future. They have difficulty imagining a future where they are not competent Competent
See competence.. For some time, to the extent that the physicians were aware of this, they thought of it as a psychological reaction. In other words, the person with Alzheimer's disease was overwhelmed by the diagnosis. Treatments with drugs that increase the amount of acetyl choline have shown the ability to think of the future often returns with treatment. It seems that the ability to think of one's self in the future as a competent agent is one of the important, and up to now, largely unrecognized functions of acetyl choline.

In most communities, the Alzheimer's Society Alzheimer's Society
A non-profit organization which provides support and education to the public about Alzheimer's disease as well as the other main causes of dementia. or Association has information and support programs for individuals with Alzheimer's disease as well as their family members and caregivers (www.alzheimers.ca, www.alz.org, www.alz.co.uk).