What should I know about Alzheimer's disease?

• What is Alzheimer’s disease?
• Who does it affect?
• How does Alzheimer’s affect people?
• What are the causes of Alzheimer’s disease?
• How is Alzheimer’s disease diagnosed?
• Can Alzheimer’s disease be prevented?
• How is Alzheimer’s disease treated?
• What can you do if you or someone close to you is diagnosed with Alzheimer’s disease?
• Living with Alzheimer’s disease
• What support is available?
• Additional resources

What is Alzheimer's disease?

Alzheimer’s disease is a progressive, degenerative disease of the brain that destroys vital nerve cells in the brain and gradually worsens over time. Alzheimer’s is the most common form of dementia (characterised by a general decline in cognitive functioning). While Alzheimer’s is more common in later life, it is not a normal part of aging.

Whom does it affect?

The Canadian Study of Health and Aging projected that 475,000 people will have some form of dementia by 2011—or 10% of population aged 65 years and over. Based on this study, 67% of dementia cases are attributable to Alzheimer’s disease. With the aging of the population, the number of people living with Alzheimer’s is expected to continue to increase, including people under age 65.

More women than men have Alzheimer’s; while the reasons for this are not well understood, it is partially explained by the fact that women live longer than men.

How does Alzheimer’s affect people?

Although every case of Alzheimer’s is different, there are many common symptoms. Alzheimer’s is progressive, with symptoms gradually increasing and becoming more persistent.

Warning signs identified by the Alzheimer Society of Canada include:

1. memory loss that affects day-to-day function

2. difficulty performing familiar tasks

3. problems with language

4. disorientation of time and place

5. poor or decreased judgment

6. problems with abstract thinking

7. misplacing things

8. changes in mood and behaviour

9. changes in personality

10. loss of initiative

It is important to note that the symptoms listed above are not necessarily caused by Alzheimer’s disease, as they may result from other conditions. If you or someone you know has any of these symptoms, consult a doctor.

More information on these symptoms is available by visiting the Alzheimer Society of Canada web site.

In general, Alzheimer’s is classified into three stages: early, middle and late. Early stage Alzheimer’s disease patients typically need minimal assistance with simple daily routines. Middle stage patients may experience impaired long-term memory and personality changes. Persons with late stage Alzheimer’s are completely dependent on caregivers. However, there is not always a clear distinction between these stages, as symptoms can appear and progress quickly and/or vary in terms of severity, even from day to day.

Friends and family that care for someone with Alzheimer’s can be affected emotionally, physically and financially. It is therefore equally important for caregivers to seek out their own supports and to recognize signs of stress that they may experience.

What are the causes of Alzheimer's disease?

Research has been able to identify factors that are associated with the risk of developing Alzheimer’s disease. The most important factor is age, as risk increases rapidly after age 65. Fewer than ten percent of Alzheimer’s disease cases show an obvious inheritance pattern; these usually occur before age 60. However, genetics is believed to play some role even in late onset Alzheimer’s disease.

Individuals with Down Syndrome are at an elevated risk. Other possible risk factors include brain injuries and risk factors for cardiovascular disease (hypertension, elevated serum cholesterol, diabetes).

How is Alzheimer’s disease diagnosed?

While the only definite way to diagnose Alzheimer’s disease is through an autopsy, p hysicians are generally accurate at diagnosing possible or probable cases of Alzheimer’s disease. This is done by:

• conducting tests to assess memory, problem solving, counting, ability to carry out tasks of daily activity and language skills;
• examining the patient’s medical history and by carrying out medical tests such as a physical exam and laboratory tests of blood, urine or spinal fluid; and/or
• conducting brain scans such as computed tomography (CT) scan or magnetic resonance imaging ( MRI) test.

Can Alzheimer's disease be prevented?

It is still unknown how to prevent Alzheimer’s. However, there is growing evidence that lifestyle habits may help prevent or delay the onset of Alzheimer’s. These include:

• keeping one’s mind busy with activities such as playing cards and doing crosswords;
• staying socially active;
• remaining physically active;
• eating healthy foods such as fruits, vegetables and fish;
• maintaining healthy levels of blood pressure, blood sugar and cholesterol.

For more information, visit the Alzheimer Society of Canada’s web site:

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How is Alzheimer’s disease treated?

Currently, there is no cure for Alzheimer’s. There are medications, however, that can help slow down the decline in memory, language and thinking abilities. Medication is also used to treat psychiatric conditions which may occur with Alzheimer’s disease.

The management of Alzheimer’s disease also includes non-pharmacological strategies aimed at managing problem behaviours, modifying the home environment to reduce the risk of injuries, and using appropriate communication techniques as language skills are lost. The goal is to preserve the best possible quality of life for the affected person by giving them the opportunity to use their remaining abilities in a safe, secure living space.

What can you do if you or someone close to you is diagnosed with Alzheimer’s disease?

• Be informed about the disease and what options are available (for supporting both the person diagnosed as well as their family members). The major source of support in the country is the Alzheimer Society which has local offices across the country. For support outside Canada, see the list of International Alzheimer Organizations. Other local services, such as community agencies and health centres, may also be able to provide information about the services and care options available in your community, the assistance that may be available to help pay for these services, and the facilities/programs that provide quality care.

• Plan for the future by putting legal and financial documents, such as living wills and powers of attorney, into place. You may wish to consult with legal and financial professionals. In making such plans, it is important to remember that a diagnosis of Alzheimer’s disease does not necessarily mean that there is an inability to be involved in decision making.

• Be aware of what interventions exist for managing symptoms and improving quality of life. Speak to your doctor or contact the Alzheimer Society of Canada and/or their local offices for information.
  
  Examples of possible interventions include:
  • Medications that can slow progression of the disease and/or help to manage symptoms (for example, depression or cognitive function);
  • Social and psychological care that can:
    • Help maintain independence and functioning as long as possible
    • Address behaviour difficulties and increase quality of life
    • Help the caregiver(s) maintain their own mental and physical well-being
  • Environmental modifications to minimize confusion and distress and provide safe living spaces.

Taking care of someone with Alzheimer's disease can result in neglecting one’s own emotional, physical, and spiritual health. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression . If you want to continue to give care, it is essential that you look after yourself. There may be programs available in your community that offer assistance with household chores or caregiving tasks. The Alzheimer Society of Canada suggests steps that you can take to prevent caregiver burnout at: Alzheimer Care – Caregiver Support

Living with Alzheimer’s disease

A diagnosis of Alzheimer’s disease does not mean that steps for healthy living cannot or should not be taken. Living well with Alzheimer’s disease means:

• adapting to activity restrictions, both physically and attitudinally;
• remaining engaged socially and physically;
• coping with and managing changes; and
• choosing engagements that allow positive interactions with others, thereby enhancing a sense of purpose, and autonomy.

In recent years, programs and resources have been developed to support persons with dementia and Alzheimer’s in a way that respects their dignity and autonomy in order to enhance quality of life and well-being. For example:

• The Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo has produced educational tools such as:
• I Am Still Here DVD and Teaching-Learning Guide – the play I'm Still Here captures important aspects of, and deepens understanding about, the dementia journey from the perspective of persons living with dementia and their family partners in care.
• A Changing Melody Toolkit – this kit is a 177-page resource guide to help plan and implement forums specifically designed by and for persons with early-stage dementia and their family partners in care.
• By Us for Us © Guides – a series of guides created by persons with dementia to help persons with dementia have the tools to enhance their well-being and manage daily challenges.
• The Alzheimer Society of Canada provides a “creative space” on their web site for people affected by Alzheimer's or a related dementia to express their experiences through creative writing and artwork. Visit: Creative Space
• The Society for the Arts in Dementia Care: built on the premise that people living with dementia have the right to dignity, to be heard and to be valued, the Society provides a forum for creative expression in dementia care. The Society brings together academic research and practical knowledge through collaboration between the medical profession and the creative arts. Visit: http://www.cecd-society.org/index.html

What support is available?

The Alzheimer Society of Canada offers a variety of programs and services that include:

• Information for people with Alzheimer’s disease: I Have Alzheimer’s Disease
• Publications: The Library
• Local educational meetings and support groups
• The Alzheimer Wandering Registry – a program organized with the RCMP that helps people find those with Alzheimer’s or dementia who have wandered
• Discussion Forums for caregivers, people with Alzheimer’s or health-care professionals
• Resources – books, journal articles, videos and web links for those with Alzheimer’s, caregivers and children
• Information on Finding Help, including respite care and day programs.

For more information, contact:
Alzheimer Society of Canada
20 Eglinton Avenue West, Suite 1200
Toronto, Ontario M4R 1K8
Telephone: 1-800-616-8816
Fax: 1- 416- 488-3778

Additional resources

Developmental Disabilities and Alzheimer's Disease...What You Should Know

L'Alzheimer et ses mystères

Adapted from content originally created for the Canadian Health Network by the Alberta Council on Aging and the Consumer Health Information Service (CHIS), and revised by the Saskatchewan Abilities Council. Further revisions by the Public Health Agency of Canada.