CARER Starter Guide for Champions
This is a quick starter guide for the My Dementia Companion CARER tool, the world’s first smart dementia guide.
As a Champion for the CARER tool, you can use this guide to start someone using the tool. You can also click below to jump to the heading:
Introduction
Why we created My Dementia Companion CARER
Empowering family and friend carers to look after their loved ones and themselves is important. However, the current support information designed to help them is too overwhelming, impractical and not personalised enough to guide them through their unique journey.
Benefits
The My Dementia Companion CARER tool helps simplify this complex journey into more manageable steps for the families to go through.
Note: learn more about this dementia journey here.
As a web-app, it intuitively guides you through the journey by providing bite-sized support information from professionals and practical tips from other carers, guiding you throughout your journey, from early to late stages.
So instead of being overwhelmed and confused, carers can get the help they need to live well.
It is a very easy-to-use online tool co-designed with ~100 carers and professionals.
1. Open your web browser and go to mydementiacompanion.com.au.
2. Click on the orange “Launch Tool” button to open the tool in a new browser window.
3. Register a new account, so you can keep save your progress. If you have Gmail or Microsoft email (e.g. Hotmail, Outlook or Live), click on the button at the top to registered with those accounts without having to create another password.
For other emails such as iCloud, Optus... enter your email address and create a password at the bottom. For this option, you have to go to your Email Inbox, open the Verification Email and click on “Click here” to confirm this is you (check your spam folder if you don’t get this email).
4. Answer 5 short questions for us to start personalising the support information:
i) Your details as a family/ friend carer
ii) Details of the person you are supporting
iii) Your relationship (resources will be tailored accordingly, e.g. intimacy for spouses)
iv) Details about the person’s diagnosis and stage
v) Pick 3 Topics that you are having the most trouble with now. You can pick more later (so, you won’t be overwhelmed). Each Topic is a check-point on the dementia journey map.
5. Once you are on the 'Home' screen, you can see your dementia journey to guide you. The three topics that you selected in step v) above will have a “To Start” circle in them.
6. There’s a short tutorial video which will pop up to help you.
7. On the journey, you can click on a Topic and you see Sections appearing to step you through this part of the journey, e.g. Getting a diagnosis, Driving and transport etc.
8. Each Section curates quality and up-to-date resources from expert organisation and government, including where to get subsidies and support (navigating), and how to develop care strategies to manage challenges or changes. They include videos, articles, checklists and more.
Sometimes you have to answer a question see the next Section, which will be personalised for you. You can also click a button such as 'Next' or 'Show us more' to progress.
Note: the resources are evidence based and curated from reputable sources. They are created by expert organisations for people of all health literacy level.
9. Most Sections contain practical Tips from other carers, which make you feel less alone and help to put the curated resources into practice. You can also share a Tip to help others.
10. As you complete each Section, it will collapse with a “tick” mark to help you keep track of your progress. You can exit and return to where you last left off (the last “tick”), and also click on the completed Section headings to re-open them.
11. The line connecting the ticks shows your unique journey. This is because the CARER tool will show you relevant Sections based on you answers to questions, needs and situation, e.g. where do you live, does your loved one drive, your relationship with him/her etc.
12. When you complete a Topic by finishing the last Section or clicking on 'Mark Complete', that Topic will be marked 'Completed' on the journey
13. If you have found a Section you want to come back to later (e.g. apply for a specific subsidy), you can click “Save it for Later”, which will move that Section to the “Saved” tab.
14. If you are ever lost, click on the 'Home' tab to return to the journey view.
15. You can also search any keywords at the top of the journey for quick access to solutions, such as driving, legal, language, diagnosis, activities, cooking, holiday, moving, equipment, palliative care, repetition, wandering, refusal, eating, hallucination and much more.
16. If you have any questions, you can always contact us on the 'Chat' icon, 'Question?' button, or through our website.
Tips for changed behaviours and daily challenges
Just a note on managing changed behaviours and daily challenges, such as repetition, wandering, eating difficulties and more.
They are located at the very bottom of the "More Topics" tab for easy access, and you can also search for them by keywords.
They are mostly grouped with a Section containing overview information, such as "Repetition related changes and challenges", followed by specific challenges,
such as "Repetitive behaviors", "Repetitive phone calls" and so on.
The suggestions and tips in each specific challenge may be useful. We also highly recommend you view the overarching Section, in this case "Repetition related changes and challenges", which contain some overview information and also a checklist to manage change behaviors.
It also includes a part on investigate underlying causes and develop specific care strategies (this is the most popular Section in our app, which many carers have said is very useful).
It uses a PECT model to help you uncover unmet needs that may be triggering a specific changed behavior.
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P refers to Personal needs.
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E stands for the Environment
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C for Communication and
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T for Tasks or activities.
This is because dementia reduces the person's ability to communicate needs, such as hunger boredom pain and missing someone. So, you can make a difference by getting into a habit of regularly using the PECT model to identify and then address those needs, such as
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wandering the house looking for food, but can't find the kitchen, which is a Personal and Environmental need. Then you can label the cabinet or establish a regular eating routine to help.
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Or withdrawing from activities in response to pain. This is a Personal need, so you can properly manage the pain.
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Aggression in response to frustration with being unable to get dressed, because there are too many steps involved, such as choosing the colour, selecting the right thickness of clothing, having the right combination, doing the buttons and more. So, you can help by selecting the clothes for them and they only have to put it on. An unmet Task need.
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Or repetitively calling out for a deceased person because they miss them. This is a Personal and Communication need, which you can help by asking them about the memories of that person, or using a photo album to address this need.
Additional information
Some useful tips
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Investing to learn new skills to manage dementia challenges can be daunting at the start, but it will make life much easier later. The CARER tool also makes this experience much easier by stepping you through one bite-sized Section at time.
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Read our series of short onboarding emails after registration to get the most out of the tool.
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The dementia journey can be long and complex. Be sure to log-in regularly to go through Topics and Sections.
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Each time you use it, you can use it for as little or as long as possible, at your own pace. It remembers your progress with the “ticks”, so you won’t be lost.
Who we are
We are a social enterprise created by passionate volunteers. We have one mission, to empower carers to live better with dementia. We would
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love your feedback to improve, and
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appreciate you forward My Dementia Companion to other friends, family or clients to help them.
We are here to help
If you have any questions, please view our CARER Champion resources here, which include:
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the Tutorial video
You can also Contact us here, use the "Question?" tab or click on the chat icon in the tool.
Short FAQ
Why do I have to register with my email?
This allows the tool to personalise the information curated for you, track your progress and you can save favourite items.
Do I have to sign-in every time?
If you log out, then you need to sign-in again. If you don’t log out, you don’t need to.
How long should I use the My Dementia Companion CARER tool each time?
You can use it for as long (or as short) as you like each time. Because we know life gets busy, and each person's dementia journey is unique (progresses at different speeds), we designed the tool to remember your progress when you exit and return.
What type of support information will I find here?
Support information from professionals and tips from other carers, guiding you to government subsidies plus strategies for coping and caring at home.
How do you ensure the information is quality?
We have an experienced team and robust quality assurance processes in place.
How often do you check for updates?
We check for updates monthly.
How does it personalise to my journey?
Content in on the journey is added based on how you use the tool and the dementia progression. Information you see within each Topic is unique to you based on how you use the tool.
Do I need a credit card to start a free trial?
No, you don’t need a credit card to start the free trial. We are passion project and our very modest fee helps us keep curate and maintain resources and features. Learn more here.
Who can I contact if I have questions?
Yes, please Contact us here, use the “Questions?” tab or click on the chat icon in the CARER tool.
Note: A more detailed FAQ could be found here.