I was delighted to be asked to support the Scottish Dementia Working Group to update the “Top Tips” for living with dementia booklet.
First edition
The first edition of this wonderful booklet was created in 2015 by a ‘Top Tips” subgroup formed with members of the Scottish Dementia Working Group and an occupational therapy intern from Alzheimer Scotland and Queen Margaret University, Edinburgh.
The purpose of this group was to collect a range of tips for living well with dementia, tried and tested by members of the group. These tips were then collated together in a booklet to be shared with people affected by dementia. The first booklet was published in 2017.
About the Scottish Dementia Working Group
As many of you will know, the Scottish Dementia Working Group (SDWG) is a national, member led campaigning and awareness raising group for people living with a diagnosis of dementia in Scotland. Founded in 2001, the group has been at the forefront of campaigning for improved dementia support and services ever since, raising awareness to help tackle stigma, working with decision makers to ensure that people living with dementia have a voice to influence policy and practice, and working as partners in dementia research.
The Scottish Dementia Working Group is part of Alzheimer Scotland’s Active Voice network along with the National Dementia Carers Action Network (NDCAN). Find out more at http://www.alzscot.org/active-voice
Time for an update
Fast forward to 2024 and current members of the Scottish Dementia Working Group (SDWG) felt it was time to update this valuable resource – and I happened to be in the right place at the right time to help.
The Process
My starting point was to review the existing document sections.
I then met with current members of the SDWG via Zoom. We were considering the following questions: What do you do that makes the day enjoyable? What helps you to live as you want to? We also reviewed the existing document.
Following this Zoom meeting, I then pulled together themes from our discussion, and along with the existing content, created sections for the new edition.
A week ahead of the second Zoom meeting, I sent the draft to SDWG members to review.
During the second Zoom meeting I shared the initial themes, gained feedback and further suggestions. These calls were such a lovely collaborative experience with so many ideas being brought together.
I then took all of the suggestions and incorporated them into an updated version of the Top Tips booklet.
Top Tips for living well with dementia
The starting point for the new edition was a message from the Scottish Dementia Working Group members: “We’re sharing tips that have proven effective for us and fellow individuals living with dementia. We recognise that everyone is unique, and our goal is to provide strategies that resonate with you. It’s about discovering what works best for your specific situation. While there’s no one-size-fits-all solution, we encourage you to explore and find what suits you best.
We understand that some people embrace technology, while others prefer alternative approaches. That’s why we’ve included sections covering both perspectives. Keep doing the things you love and the things that matter to you.”
As Stuart from the Scottish Dementia Working Group says: “My life has changed, but it’s not over.”
The current SDWG members decided on the following sections:
Around the home, At home in the kitchen, Reminders around the home, Home safety and security, Technology, Managing medication, Travel tips, Engaging with companies and service providers, where to get support when you need it.
Over to the Communications Team
Once we were all happy with the content of the Top Tips booklet, we handed it over to the Alzheimer Scotland Communications Team to make it look beautiful.
A short run of the new booklet was printed in time for the Alzheimer Scotland Conference. They flew off of the Scottish Dementia Working Group stand. The Alzheimer Scotland Conference was also my first opportunity to meet members of the Scottish Dementia Working Group in person (although trying to get everyone in one place for a photo proved impossible!)
Final changes
We made the final few tweaks after Alzheimer Scotland Conference. The main change was to highlight the me in dementia. This is because personhood and identity are so important, we need to see the Me in dementia.
It’s now ready to share, so download your copy here and please share widely!
Contributor
Blog by Fran Hamilton Occupational Therapist, Consultant and Trainer.
Thanks to past and present members of the Scottish Dementia Working Group for the use of their words from 2017 and 2025 versions of Our “Top Tips” for Living with Dementia booklets.