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Introduction

 

​The dementia journey is complex and can be confusing and overwhelming.

 

The My Dementia Companion CARER tool is the world's first smart digital guide that simplifies the journey to guide family and friend carers on where to go, what to do and how to manage challenges at home. So, they can live well with dementia.

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How to register and navigate the CARER tool

 

You can start by registering a new account with your email address, so it can remember your progress and provide you with more tailored guidance.

 

Registration is quick and easy. It involves entering your email and creating a password, verifying your email address, and answering five short questions about you and the person you are supporting.

 

The My Dementia Companion CARER tool can even help you if the person you are supporting doesn't have a diagnosis yet.

 

The last question, which is Question 5 lists out key Topics based on the dementor journey from before.

 

To start personalizing your journey please select 3 items that you would like help with right now. You can always add more later.

 

You are now in the "Current Topics" tab, which acts as your current to-do list.

The "Welcome" Topic helps you to learn how to use the tool. The Topics you have selected in Question 5 are available in the middle column.

 

More Topics will be added to the "Current Topics" tab as you and your loved one progresses through your unique journey.

 

Each Topic has multiple Sections to guide you through.

 

Each Section includes links to videos and articles from professional organisations, including how to access subsidies and develop care strategies to live well at home. All the information is together in one place.

 

Links will open in a new window. Remember to close them to return to the CARER tool after you have finished with them.

 

Tips from other carers can also be helpful. We encourage you to share any tips you may have to help others.

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You can use the My Dementia Companion CARER tool at your own pace. Each time you return, you can pick up exactly where you last left off and every Section that you complete gets marked with the tick.

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The next Section will appear when you click on "Next" or answer a question.

So, the Sections are personalised and unique to you, depending on your situation.

 

You can also save a Section for later, which can be found in the "Saved for Later" tab.

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You can browse or search for more information in the "More Topics" tab,

where you will find all major checkpoints in your dementia journey listed in the middle column as Topics.

 

You can also add any Topic to the "Current Topics" tab by clicking on it.

The CARER tool can also estimate where you're up to in your dementia journey

and automatically adds new Topics to the "Current Topics" tab to help you.

 

Once you have completed a Topic, it will be moved to the "Archived" tab. You can still review it at any time.

 

General principles of managing 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.

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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.

• P refers to Personal needs.

• E stands for the Environment.

• C for Communication and

• T for Tasks or activities.

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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:

 

• wandering the house looking for food, but not being able to find the kitchen, which is a Personal and Environmental need. Then you can label the cabinet or establish a regular eating routine to help.

• Or withdrawing from activities in response to pain. This is a Personal need, so you can properly manage the pain.

• 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.

• 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.

 

If you have any feedback on any Section, please click here.

 

As a passion project created by volunteers, our only goal is to make it as useful as possible for carers.

 

If you have any questions you can click here to ask us.

 

Thank you. We hope you find all the resources and tips in My Dementia Companion CARER helpful.

 

You can start using the CARER tool by clicking on the orange "Launch Tool" button below (or anywhere on our website).