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Health Care - Learning About the Disease

  • 1) Understanding Alzheimer's disease and other related dementias
  • 2) Causes and risk factors related to Alzheimer's disease
  • 3) Symptoms and the progression of Alzheimer's disease

1) Understanding Alzheimer's disease and other related dementias

Dementia is a progressive decline in cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. There is a lot to learn about dementia along the journey. But both you and your partners in care can take steps each day to make it more manageable together. Some of the most important things to note are that the changes you experience are because of dementia. Remember you will have good and bad days. Everyone with dementia is affected differently, so be open to new ideas so you can find what works for you. Remember, you are not alone. There are many people going through the same situation, but there are also many people available to help you on your journey.

Frequently Asked Questions

I have been told I have dementia. What does that mean?
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Dementia is not a disease in and of itself, but a set of symptoms or a syndrome. The brain cells change and changes usually cause problems with:

  • memory
  • communication (finding and using words correctly as well as understanding what you are being told)
  • thinking
  • judgment
  • reasoning
  • mood
  • behaviour (irritability and depression are often experienced)
  • coping (blame may be placed on others)
  • caring for oneself (less showering, forgetting to brush teeth, comb hair, etc.)
  • understanding the world (disorientation to place and time)

There are many forms of dementia - Alzheimer's disease is the most common form to date.

How many people are affected by Alzheimer's disease?
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Alzheimer's disease is the most common form of dementia. Between 50-70% of dementia cases are caused by Alzheimer's disease, alone or in combination with other types of dementia. This dementia is more common in women than in men(1).

What is Alzheimer's disease?
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Alzheimer's disease is the most common form of dementia and it can eventually affect most areas of the brain. Alzheimer's disease usually begins with short-term memory loss. People affected by Alzheimer's Disease need to be reminded about things several times, or they may ask the same question several times, or they may forget important day-to-day things, like taking their medications or paying bills. Having trouble finding your way in familiar places can also happen early on. Eventually, Alzheimer's disease affects your thinking and problem solving ability, your language, and your ability to perform everyday tasks and activities. Alzheimer's disease can also affect your mood and your behavior, and this can occur at any time in the course of the disease.

What are the other types of dementia?
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Other types of dementia include:

  • Vascular dementia
  • Lewy Body Dementia and Parkinson's Disease dementia
  • Fontotemporal dementia
  • Mixed dementia (usually vascular and Alzheimer's)
  • Huntington's Disease
  • Alcohol related dementia
  • Head injury; acquired brain injury
  • Benign brain tumor or hydrocephalus (fluid buildup on brain)
  • AIDS related dementia(2)

What is vascular dementia?
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This is a broad term for dementia associated with problems of blood circulation (oxygen) to the brain. Pure vascular dementia is rare; it is more common to see a mixed dementia (Alzheimer's and vascular dementia). When blood is not circulating to the brain to provide oxygen, the cells in the brain die. Strokes are a common cause of vascular dementia. This dementia usually has a sudden onset. Transient Ichemic Attacks or TIAs are warning signs of a possible stroke and warrant urgent medical attention to prevent a stroke and thus preserve cognitive function. Vascular dementia is slightly more common in men than women(3).

What is Lewy Body dementia?
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The name comes from abnormal structures called Lewy bodies. These bodies are said to cause death of the nerve cells(4). Some features of this dementia resemble Parkinson's. Muscle stiffness, hallucinations, fluctuations in symptoms, and stooped posture are all signs of Lewy Body dementia. This dementia is more common in men than women(5).

People with Parkinson's disease can also develop symptoms that can be similar to those of Lewy Body dementia, but less severe.

What is frontotemporal dementia?
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This type of dementia primarily affects the frontal and temporal lobes of the brain, which are the areas associated with personality and behaviour. The brain cells in these areas shrink or die. A person with this dementia may have difficulty with personality changes, major behavioural problems, difficulties planning and organizing, or with producing or understanding speech. They usually have an intact memory in the early to mid-stages of the disease. This dementia occurs at an earlier age than Alzheimer's disease and can affect both men and woman(6).

What does the latest research tell us about dementia?
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Although there is no cure for dementia presently, researchers all over the world are working hard. For an annual summary of research in this area, you can visit the Alzheimer Society of Canada website. Further, you may want to subscribe to receive electronically the Dementia Weekly News circulation . This circulation highlights Canadian research and policy that focuses on enhancing the quality of life for those affected by dementia. Another option is to visit the Alzheimer Research Forum website, which is a clearinghouse of information and research related to Alzheimer's disease and other related dementias.

How can I become involved in research?
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If you are interested in becoming involved in research related to dementia, the Alzheimer Society of Canada recommends that you contact your local Alzheimer Society Chapter to find out if they are recruiting participants locally. Further for information on research nationally and internationally, visit the Consortium of Canadian Centres for Clinical Cognitive Research (C5R) website or www.clinicaltrials.gov(7).

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Sources:

The information above comes from the following source(s):

(1) Alzheimer Society of Canada. (2009, May). Alzheimer's disease: Causes of Alzheimer's disease. Retrieved November 23, 2011 from http://www.alzheimer.ca/en/About-dementia/Alzheimer-s-disease/What-is-Alzheimer-s-disease.

(2) Alzheimer Society of Peel. (n.d.). Your guidelines to "a journey through care". Mississauga, Canada: Alzheimer Society of Peel.

(3) Alzheimer Society of Canada. (2003, July). Related dementia – vascular dementia. Toronto, Canada: Alzheimer Society of Canada.

(4) Compiled with permission from Australian Government. (2006). Living with dementia. A booklet for people with dementia. Canberra, Australia: Commonwealth of Australia.

(5) Alzheimer Society of Canada. (2003, July). Related dementia – lewy body dementia. Toronto, Canada: Alzheimer Society of Canada.

(6) Alzheimer Society of Canada. (2007, August). Related dementia – frontotemporal dementia. Toronto, Canada: Alzheimer Society of Canada.

(7) Alzheimer Society of Canada (2009, April). How drugs are approved in Canada. Retrieved on October 14, 2011, from http://www.alzheimer.ca/en/en/Living-with-dementia/Treatment-options/How-drugs-are-approved-in-Canada.

Helpful Links and Resources

Title of Resource What it Offers? Access to the Resource
Consortium of Canadian Centres for Clinical Cognitive Research (C5R) Provides a list of clinical trials and research studies underway in Canada. http://www.c5r.ca/?page_id=2
ClinicalTrials.gov A service of the U.S. National Institute of Health listing current research programs. www.clinicaltrials.gov
Alzheimer Society of Canada Provides an annual report on dementia research in Canada. http://www.alzheimer.ca/en/Research
Dementia Weekly News Service A weekly electronic circulation that summarizes the most current research and policy related to dementia care and support. http://www.marep.uwaterloo.ca/
education/news.html
Alzheimer Research Forum Clearinghouse of information and research related to Alzheimer's disease and other dementias http://www.alzforum.org/

2) Causes and risk factors related to Alzheimer's disease

Although there is some speculation that getting Alzheimer's disease may be connected to family history, external factors in the environment, or internal factors within a person, currently the causes of Alzheimer's disease are unknown. Scientists are speculating however that it could be the result of multiple factors both internal and external to the person(1). There are certain risk factors that can place someone in a higher risk category for dementia. It is important to understand these risk factors for prevention.

Frequently Asked Questions

Is dementia just a part of normal aging?
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A: No. Dementia is more than 'being forgetful' from time to time. Dementia is more common in people over 65 years of age, but it is not a part of normal aging. If memory loss is out of the ordinary for you or people in your age group, and is interfering with your daily living, you should consider speaking with your doctor(1).

What causes Alzheimer's disease?
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There are many different types of dementia and they all have different causes (physical changes in different parts of the brain). Researchers believe that Alzheimer's disease (and other related dementias) is caused by a buildup of protein in the brain. However, they also believe that there is no single cause; both internal and external factors may also play a role in developing dementia. Researchers are only now beginning to understand some of the reasons for dementia, but they do not understand why some people are affected by the physical changes in the brain and others are not. Research is ongoing to better understand the reasons for dementia and to find a cure(2).

Is there a cure for dementia?
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Currently there is no cure for dementia; however, you can decrease your risk of getting certain types of dementia (i.e., Alzheimer's disease, vascular dementia) through changes in your lifestyle.

How can people decrease their risk of getting dementia?
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Some risk factors associated with dementia are uncontrollable (e.g., age, family history, genetics, gender) while other risk factors can be controlled by you. Risk factors that you can control include managing your cholesterol levels, blood-pressure, and blood-sugar, controlling your weight, engaging in regular physical exercise, social activities, and activities that promote brain stimulation(3).

If I have dementia does this mean my children and grandchildren will have it too?
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Most people have a form of dementia that is not hereditary; however, there is a rare form of dementia (Familial Autosomal Dominant Alzheimer Disease) that is passed directly from one generation to another. Very few people have this form of dementia. Although it is important for your clinician to know of the history of dementia in your family for diagnostic purposes, having a family member, or more than one family member, with dementia does not mean that Familial Autosomal Dominant Alzheimer Disease runs in your family(1).

I have not had a very healthy active lifestyle, is that why I have dementia?
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Although more evidence in the research supports healthy minds and bodies reduce the risk of dementia, you cannot change the past…you can however focus on moving forward knowing that maintaining a health body and mind will provide you with good quality of life. You can take charge of your life now and make healthier choices. Be more physically fit, eat healthily by including fresh fruits, vegetables and fish in your diet, reduce your stress through deep breathing and meditation, maintain a low blood pressure and cholesterol level and stay socially active.

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Sources:

The information above comes from the following source(s):

(1) Alzheimer Society of Canada. (2003). Shared experiences: suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada.

(2) Alzheimer Society of Canada. (2009, March). Causes of dementia: Introduction. Retrieved October 14, 2011, from http://www.alzheimer.ca/en/About-dementia.

(3) Alzheimer Society of Canada. (2009, May). Alzheimer's disease: Causes of Alzheimer's disease – Alzheimer's disease and risk factors. Retrieved, November 23, 2011, from http://www.alzheimer.ca/en/About-dementia/Dementias.

3) Symptoms and the progression of Alzheimer's disease

Although there is currently no cure for dementia or any way to reverse the effects of the damage in the brain, the medication and treatments that are available may help slow the progression of the disease and moderate the effects of some of the symptoms(1).

Frequently Asked Questions

What are the early signs of dementia?
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Early signs of dementia include:

  • Memory loss (especially short-term memory, inability to complete what you start)
  • Confusion
  • Difficulty performing familiar tasks (following recipes, using a bank machine)
  • Language problems (such as a loss of words or names of things)
  • Disorientation to time and place (forgetting where you are going, getting turned around, missing meals or appointments)
  • Poor judgment (impulsive)
  • Loss of abstract thinking (math, being overwhelmed by too much information)
  • Misplacing things or not being able to recognize them (keys, books, glasses)
  • Personality, mood and behaviour changes (anxiety, anger, frustration, depression)
  • Loss of interest and lack of motivation – withdrawal (put off shopping, feelings of exhaustion)

What does memory loss mean exactly?
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Everyone's experience with dementia is different. Memory loss could be any number of issues, such as:

  • Remembering events from long ago, but having limited short-term memory.
  • Keeping track of time, people and places.
  • Forgetting appointments and people's names.
  • Forgetting where you placed things or how to do things you could do in the past.

If I have memory loss, does that mean I have dementia?
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No. Many people have trouble with their memory as they get older, but do not have dementia. When memory loss affects day-to-day function and is paired with a lack of judgment and reasoning, or communication changes, you should consider speaking with your doctor.

Is everyone with dementia affected the same way?
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No, it will depend on what area of the brain is affected. Everyone's experience is different. No two people with dementia present the same symptoms. For some people with dementia, doctors cannot even offer a precise diagnosis.

I have been diagnosed with dementia, what can I expect?
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A number of changes will occur for you throughout the rest of your life. No two people have the same experience. Everyone will confront his or her own unique challenges. It will be important for you to adjust and continue living with dementia.

What changes might I see in early stages of Alzheimer's disease? [These stages are used by physicians to categorize individuals and provide appropriate medication; however everyone is unique and symptoms vary.]
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Memory loss usually becomes more noticeable for your friends and family. Things such as banking and conversations with more than one person can become more difficult. At this stage, many of your abilities remain the same, and you will require little assistance(2).

What changes might I see in middle stages of Alzheimer's disease?
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Your ability to perform daily activities will decline. There are many challenges you will face and it is important to receive help from your family or partners in care. Memory problems will increase. You may also experience restlessness, sleep pattern changes and hallucinations(2).

What changes might I see in late stages of Alzheimer's disease?
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At this point in the disease your family members and friends will want to help you to maintain an optimal quality of life. Although this stage is scary and means you will be totally dependent and likely living outside of your home and in long term care, keep your journey in perspective(2).

How long do I have to live?
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There is no hard and fast answer. Although your condition will progress, changes for most people are gradual. In some cases, dementia progresses slowly over a course of many years. Although it might be difficult, keep things in perspective and try to enjoy every day you have(2). Focusing too much on quantity of life will distract you from what is most important – your quality of life!

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Sources:

The information above comes from the following source(s):

(1) Alzheimer Society of Canada. (2009, March). The progression of Alzheimer's disease: Overview. Retrieved October 14, 2011, from
http://www.alzheimer.ca/en/About-dementia/Diagnosis/Getting-a-diagnosis/Doctor-s-visit.

(2) Alzheimer Society of Canada. (2009). Alzheimer's disease: What to expect. Ontario, Canada: Alzheimer Society of Canada.

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[This page updated on December 13, 2012]
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