Making Sense Together | Let’s Talk about Dementia

A booklet version of the Connecting People Connecting Support online resource

In 2023 I was given the opportunity to interview five key people involved in the Making Sense Together booklet, either in the capacity of developing the resources, delivering them, or both. These interviews were full of insights, including sharing feedback from people living with dementia and their family members. Making Sense Together is a daily journal containing tips, techniques and activities to explore ways of living well with dementia. People with dementia have used these on their own and with family members and friends as conversation starters and ideas for joint activities (Over 100 pages of content).

The Making Sense Together resource was developed during the early phases of the COVID-19 pandemic. It encompasses a booklet version of the Connecting People, Connecting Support website, a downloadable Print at Home booklet, and the Journeying Through Dementia – Delivered packs. Occupational Therapists and Designers, led by Professor Claire Craig and Designer Helen Fisher, collaborated with Alzheimer Scotland, and the Scottish Dementia Working Group to shape this programme.

The work was borne out of the need to get accessible information and support to the people who needed it at a time when services were being diverted due to the pandemic. The team built on the evidence-based work underway for Journeying Through Dementia and Occupational Therapy Led Home Based Memory Rehabilitation to produce resources tailored for those at home.

The Journeying Through Dementia program, co-created with those living with dementia, prioritizes ongoing engagement in daily activities and lifelong learning. Throughout all the co-creation activities, people with dementia were clear that they wanted to have the opportunity to access groups that did not just talk about the diagnosis but that offered practical advice and support of how to continue to live well with the condition.

When the pandemic struck, the programme had already seen success at multiple test sites, but further scaling was paused whilst teams responded to local need.

The surge in calls to Alzheimer Scotland’s helpline during this time highlighted the urgent need for support, information, and self-management resources among people confined to  home, without access to services, community groups and their usual support networks. This prompted the development of the Connecting People Connecting Support online platform—which built on the occupational therapy evidence-based work that had gone into creating the Journeying Through Dementia Programme.

The success of this platform lies in its ease of navigation, accessibility, and comprehensive scope, enabling self-management and post-diagnostic support. With its user-friendly interface and 32 diverse topics, the website drew in over 30,000 views within its initial two months, serving as a foundation for interventions used by Alzheimer Scotland link workers and dementia advisors.

Not everyone has access to a computer, and to ensure that no one was being left behind, a carefully curated print at home version was created, consisting of several of the topics from the website, with the print at home button easily accessible on the website.

This was lovely for people with a printer at home, who also like to have a hardcopy of resources. More importantly though it increased accessibility and reach. When Alzheimer Scotland Helpline Staff, or staff from other teams were contacted by people without a computer, they could simply print it out and pop it in the post.

Once the website went live, the team were considering how to deliver Journeying Through Dementia in line with the pandemic. The  occupational therapy Team in Fife rose to the challenge and delivered Journeying Through Dementia online. The Lab 4 Living team created the beautiful Journeying Through Dementia – Delivered Packs. These were letterbox-sized, and consisted of a beautiful book with topics from the website, and a teabag and an activity for the session.

Sending these ahead of the online session enabled participants to share their preferences for the session. The facilitators linked the booklet content with the website, supporting greater use outside of the sessions.  

One of the loveliest comments I heard during the interviews was:

“We sent them out before the group, so they had an opportunity to work through them and one of the group member’s husband  gave us this fantastic feedback, “I would never have thought to ask these questions and I would never have thought to have this conversation with my wife. And I know how much dementia affects your memory. But one of the questions asked about our first holiday and she rattled it off, and it was lovely.”

Everyone I spoke with in these interviews and who I’ve shared the website and materials with have commented on quite how beautifully presented everything is. You can feel and see the quality and care that has gone into them, and it shows that people are worth this effort. A new diagnosis can be such a difficult time and to be given something beautiful can ensure people feel valued.

Moreover, these resources embody Occupational Therapy principles, effectively demonstrating how meaningful activity can significantly enhance well-being. They offer a cohesive approach to addressing the needs of individuals through evidence-based methods, effectively combining elements from various initiatives like Journeying Through Dementia and Connecting People Connecting Support AHP Dementia.

I couldn’t sum it up better than one of the interviewees:

 “these resources embody the profession’s skills and knowledge, catering effectively to people’s needs. It’s there in a way that people can really use to the best of their ability. They’re accessible and usable in everyday life.”

The mobile compatibility of the Connecting People Connecting Support online interactive website further extends its usability, allowing people to access vital self-management tools from the comfort of their homes. Its role in supporting brain health initiatives—emphasizing social engagement, hobbies, sleep, and nutrition—holds immense promise and aligns with public health messages and the role of occupational therapy that lifestyle matters.

The hope from everyone involved and beautifully expressed by one of the interviewees:

“do you know what my dream is? Particularly with the Making Sense Together booklet, is, if a district nurse will go in to somebody’s house, and they’d say to them, “I’ve got to Making Sense Together book I think you might find helpful.” And they say to me, you know, I’ve already got it, I got it from my GP, [or my dementia advisor, or my primary care occupational therapist, or an MSK Physio]”

I want to say a huge congratulations to everyone involved in creating and delivering this wonderful project, particularly Professor Claire Craig and Designer Helen Fisher. And a special thank you to

Ashleigh, Elaine, Alison, Carol and Wendy for your time and sharing your insights with me.  If you haven’t had a really good explore of the Connecting People Connecting Support – Occupation Matters https://dementiatogether.online/website please do!

Contributor

Fran Hamilton

Occupational Therapist, Trainer and Consultant

Enabling wellbeing at all stages of dementia and later life