What is SymptomGuide™?
SymptomGuide™ is a 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 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™ users 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 may be of help. SymptomGuide™'s symptom customization features gives the user 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 SymptomGuide™?
SymptomGuide™ 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 by establishing an account.
If someone doesn't have a diagnosis, can they use SymptomGuide™?
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?
SymptomGuide™ is a useful resource 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.
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.
Installation & Use
Do I need to install any software on my computer to use SymptomGuide™?
To use 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.
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 I update the Symptom Profile?
Typically, we suggest that users review the symptom profile on a monthly, 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 User 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™ account provides the ability to monitor the symptoms of one person.
Who sees the information I enter in SymptomGuide™?
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?
DGI Clinical 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 users to use in future versions of SymptomGuide™ leading to a better understanding of Dementia.
How is the privacy of users protected?
The privacy of users 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
We may share aggregate data for the purpose of advancing research on dementia, and to enhance/further develop SymptomGuide™ for user use. The data that we provide for research purposes will always be presented in an aggregate manner, without any information that could be used to identify individuals or users' personally. This means that no one can identify any individual user or personal information within those collective data."
How can I share the information with my family doctor or specialist?
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 user area of the website.
Can my family members login?
SymptomGuide™ is designed for an individual and/or 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. We caution all users if they decide to share personal and health information to ensure that the recipient understands that this is confidential and private information.