Frequently Asked Questions about Symptom Guide

General

What is SymptomGuide™?
What is special about DementiaGuide.com and SymptomGuide™?
How does SymptomGuide™ work?
Who can use DementiaGuide.com and SymptomGuide™?
If someone doesn’t have a diagnosis, can they use SymptomGuide™?
Will SymptomGuide™ help to diagnose dementia?
I think that I or a person I care for has dementia. What should I do?
How much does a SymptomGuide™ subscription cost?
Are there differences in the cost of fees for family members vs. professional caregivers?
Is SymptomGuide™ available now?
What is G.A.S. (Goal Attainment Scaling)?
How often is information on DementiaGuide.com updated?
Who writes the information found on DementiaGuide.com? Is it edited by health professionals?


Installation & Use

Do I need to install any software on my computer to use SymptomGuide™?
Can I access SymptomGuide™ on more than one computer?
How long will it take to set-up and maintain the Personal Profile?
How long does it take to create and track a Symptom Profile?
What if I don't have the time to input all this information at once?
How often do subscribers update the Symptom Profile?
Is it possible to manage Symptom Profiles for several people using one account?
I'm trying to watch the videos, but when I type on the title, I hear a beep and nothing happens. How can I watch them?


Privacy

Who sees the information I enter in SymptomGuide™?
Can I choose to not share this information?
How is the privacy of subscribers protected?
How can I share the information with my family doctor or specialist?
Can my family members login?


Marketing

Who sponsors the site?
Is DementiaGuide.com available in other languages?
May I add a link on my own website to DementiaGuide.com?

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What is SymptomGuide™?

SymptomGuide™ is a subscription-based, web enabled tool designed to help people understand their symptoms, track them over time and use this information as input for the treatment and management of their particular symptoms. This online tool consists of an array of symptoms that can be tracked over time, supporting information about different symptoms, a straightforward method for an individual or caregiver to identify by type and frequency their symptoms and to track the degree of change over time. SymptomGuide™ is the commercialized product arising from years of studies on dementia symptoms carried out under Dr. Kenneth Rockwood through the Geriatric Medicine Research at Dalhousie University and Capital District Health Authority in Halifax, Nova Scotia. It is based on the experience of a variety of individualized, patient-centered assessment tools. For example, we have used Goal Attainment Scaling (GAS)^{1 ,2} , as an assessment tool that identifies symptoms and then the patient and caregiver work with the health professional to establish goals that can be achieved through specific treatment, interventions or disease management techniques. SymptomGuide™ takes the key features of tools like GAS, and adapts them in an easy to use and convenient manner.

1 Kiresuk & Sherman, Community Mental Health J 1968;4:443-453. 2 Rockwood et al., Neuroepidemiology 1996;15:330-8 (which used linopirdine), Rockwood et al., J Neurol Neurosurg Psychiatry. 2002;73:500-7 (donepezil) and Video Imaging Synthesis in Treating Alzheimer’s (VISTA) trial, Canadian Medical Association Journal 2006;174-8 (galantamine).

What is special about DementiaGuide.com and SymptomGuide™?

While other websites may offer information about Alzheimer’s disease and other dementias, DementiaGuide.com is more than a website. It offers a unique tool for persons with Alzheimer’s and/or their caregivers to understand and manage their symptoms. SymptomGuide™ subscribers receive guidance on how to select and describe symptoms that are particular to one person, and to track changes in those symptoms through their Symptom Profile over time. There is also detailed information on different symptom management techniques that caregivers and physicians have used that maybe of help. SymptomGuide™’s symptom customization features gives the subscriber the option to print out profiles pertaining to the person’s symptoms that are very useful as a background information for discussions with physicians and other caregivers or family members.

How does SymptomGuide™ work?

SymptomGuide™ provides an inventory of over 60 symptoms that are commonly described as targets for treatment by patients and caregivers. For each symptom in the inventory, we provide a list of typical descriptions of how these symptoms affect patients in their daily lives. The symptoms cover seven general categories: Thinking and Judgment, Memory and Language, Personality Changes, Behaviour, Physical Changes, Everyday Activities, and Leisure Activities. SymptomGuide™ is a web-based application which allows patients and caregivers to not only select from a comprehensive symptom inventory, but also provides them with information about each symptom, including where it fits in the spectrum of dementia, how commonly it occurs, how likely it is to respond to treatment, and strategies for coping if it does not. SymptomGuide™ seeks to provide extensive information that can guide patients and caregivers in defining what they want from treatment, so that they can recognize successful treatment in their own case. Users of SymptomGuide™ typically will have many questions about dementia, so the site is structured to provide a great deal of information - for example, it contains more than 800 pages of information organized as an easy to use reference tool.

Who can use DementiaGuide.com and SymptomGuide™?

DementiaGuide.com can be accessed by anyone. The website will be helpful to anyone who is looking for information on dementia. The SymptomGuide™ profiling tool can be accessed only through subscribing, and establishing an account.

If someone doesn’t have a diagnosis, can they use SymptomGuide™?

The SymptomGuide™ profiling tool is designed for people with a diagnosis of Alzheimer's disease or another dementia.

DementiaGuide.com and the SymptomGuide™ is not a substitute for assessment, diagnosis and/or treatment by qualified healthcare professionals. The content provided in this website and SymptomGuide™ is designed for you to use in conjunction with appropriate professional health care.

Will SymptomGuide™ help to diagnose dementia?

SymptomGuide™ is designed for people with a diagnosis of Alzheimer's disease or another dementia and should not be used as a diagnostic tool. Please consult a qualified health care professional in your area for a diagnosis and possible treatment options for any health concerns you may have.

I think that I or a person I care for has dementia. What should I do?

DementiaGuide.com and the SymptomGuide™ are useful resources for dementia. However, this website should not replace the role of your family doctor or specialist. If you have concerns regarding your health or the health of a person you care for, please contact a local health care professional for a diagnosis and possible treatment options.

How much does a SymptomGuide™ subscription cost?

Individuals can set up a free trial account with no requirement for credit card information.

After this free trial period, we encourage you to subscribe on a monthly, quarterly, or yearly basis. The prices are as follows:

	Canada (CAD)	US (USD)	UK (GBP)
1 month	$20.00	$20.00	L 10.00
3 month	$45.00	$45.00	L 22.00
12 month	$120.00	$120.00	L 60.00

“Create Account” will take you through the payment process with our third party secure provider, PAYPAL - all major credit cards are accepted.

Are there differences in the cost of fees for family members vs. professional caregivers?

For organizations such as long-term care facilities or health management organizations, DementiaGuide Inc. will negotiate a fee structure that reflects a reduced fee, based on volume (i.e., the number of accounts required). For example, if a facility wishes to track symptoms for 50 individuals, a reduced monthly subscription fee could be negotiated.

Is SymptomGuide™ available now?

Yes. You may view the features of SymptomGuide™ through three available tours in our ‘Take a Tour’ section:

- Creating a Symptom Profile
- Tracking Symptom Changes
- Using the Symptom Library

What is G.A.S. (Goal Attainment Scaling)?

Goal Attainment Scaling is a method that it being more commonly used by physicians and caregivers to set targets for accomplishment for a person affected by Alzheimer’s to achieve as a result of drug therapies or symptom management techniques. It is a way to select tasks or activities that can demonstrate improvement or slow the decline in the ability of the person with dementia to perform the task or activity.


How often is information on DementiaGuide.com updated?

At DementiaGuide.com we understand the importance of keeping up-to-date on developments related to dementia research, treatments and general news. Unlike many paper-based resources, the website is updated on a regular basis as new information is available.

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To use DementiaGuide.com and SymptomGuide™ you must be connected to the internet. We recommend that you have high speed internet (at least 56k). If you are able to access the internet using your computer, you will be able to access the SymptomGuide™. There are some areas in the website require additional plug-ins which will be identified for you if your computer does not already have them installed. Should you experience problems accessing any part of the website, please contact our support team and we will respond to your query.

Can I access SymptomGuide™ on more than one computer?

Yes. Because SymptomGuide™ is a web-based application, you may login to your account using any computer that is connected to the internet. We strongly urge you to keep your password protected and not to leave as ‘automatic” on multiple computers.

How long does it take to set-up and maintain the Personal Profile?

Setting up the Personal Profile will likely take 10-20 minutes, depending on many factors such as how familiar with computers you are, the speed of your computer/internet connection, and how much information you wish to enter.

Also, changes in the Personal Profile information, such as those involving medications, living conditions and/or marital status should be changed as they occur to maintain an accurate and complete record.

How long does it take to create and track the Symptom Profile?

On average, the creation of a Symptom Profile will take 15-30 minutes. The time required to create and then track a Symptom Profile will vary though, depending on the individual who is creating the Profile, and depending on the number of symptoms that are described in the Profile. A subscriber may also decide to take additional time to read about relevant symptoms information on the DementiaGuide website, to help them choose symptoms to input during the account creation process.

What if I don't have the time to input all this information at once?

You may leave and return to the site without losing the information you have entered.

How often do subscribers update the Symptom Profile?

Typically, we suggest that subscribers review the symptom profile on a bi-weekly basis, but update your profile as frequently as you observe changes – that is changes in the characteristics of a symptom, its frequency, or new symptoms as they occur. Also, changes in the Personal Profile such as information surrounding medication, living conditions and marital status should be changed as they occur to maintain an accurate and complete record.

Is it possible to manage Symptom Profiles for several people using one account?

Your SymptomGuide™ subscription provides the ability to monitor the symptoms of one person.

I'm trying to watch the videos, but it's not working (i.e., when I click on the one I want to watch I hear a beep and nothing happens, the video output is choppy). How can I watch them?

After you click on the title of the video you want to watch, a black screen should appear on the screen.

If you do not see a black screen, look near the top of your screen for a light yellow bar. When you find the yellow bar, click on it and select "Install ActiveX Control" (*depending on the settings of your computer or the internet browser you are using you may see slightly different wording.

If you do see a black screen, you need click on the screen once - to activate the control buttons, and then click the play button.

If neither of these suggestions help with the problem you are experiencing, there could be a number of other problems:

• www.dementiaguide.com could be experiencing technical difficulties. You may wish to try again in a few hours.
• Your computer may not meet the minimum requirements. You need to have 1Ghz 256 MB Ram.
• The speed of your internet connection may not meet the minimum requirements. To watch the videos, you must be at a minimum speed of 56kbps (dialup) however highspeed is suggested.

If none of these suggestions help with your situation, please contact us through the Contact Us page, and we will do our best to assist you.

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Your SymptomGuide™ information is held under the terms of your subscription agreement. Please read this carefully when you subscribe. We have designed SymptomGuide™ so that any information that can be linked to a particular individual is kept private and confidential.

Can I choose to not share this information?

DementiaGuide.com will not share any personal information that can be linked to a specific individual with any other party. Data compiled for research purposes is aggregated and no individual’s name or circumstances can be determined from the data files. It is anticipated that patterns of experience will provide relevant information that can be incorporated for subscribers to use in future versions of SymptomGuide™ leading to a better understanding of Dementia.

How is the privacy of subscribers protected?

The privacy of subscribers is protected through applicable privacy laws, accepted practices, including a recognized ethical review process, and our stringent internal policies and procedures. See our Terms and Conditions of Use and Privacy Statement. Excerpt below:

"When you subscribe to SymptomGuide™, we collect only the personal health information that you enter to create a Personal Profile of symptoms. This information is used to track and report changes in symptoms over time. This individualized information is all private and we do not use this information for any purpose other than to provide you with the SymptomGuide™ service.

Disclosure of Personal Information to outside parties

We do not give or sell your name to other companies under any circumstances. We do not disclose the personal information provided to us to anyone outside of DementiaGuide Inc. unless you specifically authorize it, it is required by law, or disclosure is necessary to protect the safety of customers, employees or property.

Disclosure of aggregate information

You may print out any page of DementiaGuide.com or the SymptomGuide™ by selecting the ‘PRINT’ button in the upper right corner of each page. You may also select ‘Send to a Friend’, which will send an email message with a link to a particular page of the public website. This does not apply to the SymptomGuide™ and the subscriber area of the website.

Can my family members login?

No, SymptomGuide™ is designed for an individual and their caregiver. If you wish other family members to have personal profile or symptom profile information then it is recommended that the pertinent pages be printed and then shared. DementiaGuide.com cautions all subscribers if they decide to share personal and health information to ensure that the recipient understands that this is confidential and private information.

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Is DementiaGuide.com available in other languages?

Currently, DementiaGuide.com and SymptomGuide™ are available in English only. We plan to offer the website in other languages in the future.

Who sponsors the site?

The website DementiaGuide.com and SymptomGuide™ is wholly owned by DementiaGuide Inc., a privately owned Canadian incorporated company. Dr. Kenneth Rockwood is the President and CEO of DementiaGuide Inc.

May I add a link on my own website to DementiaGuide.com?

DementiaGuide.com is a valuable resource for anyone affected by dementia. We hope to provide this information to as many people as possible. Contact us with a brief description of your website and a working link to the site, for our review and consideration. Please note that any information found on DementiaGuide.com is protected by copyright.

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