We’ve always aimed to provide person-centred, responsive support to any MacIntyre team where staff are noticing changes in a person that could be due to dementia, but until now we’ve never had a formalised structure to share with local teams that shows staff exactly what support is available to them.
We are now pleased to be launching our Dementia Pathway, an internal MacIntyre structure that takes staff from the very first steps when someone is showing symptoms of dementia all the way through to in-depth education for the advanced stages of dementia. This is dovetailed by our Dying to Talk offering that provides structure around advanced and end of life care planning, best practice advice when someone is dying and loss and bereavement support.
Detailed in our Dementia Pathway is attending our Dementia Special Interest Groups (DSIGs). These aren’t just for MacIntyre staff - anyone can join us, for free, to access 3-hours of learning and support that will leave you with inspiration and information about dementia. Our next DSIG will focus on the topic of ‘Understanding behavioural changes due to dementia’ and you can find out more about the Dementia Pathway. Register for your ticket here.
Whilst the pathway in its current stead is specifically tailored to supporting staff, we are working on a version which we will make available to people external to MacIntyre, in which we share our best practice. Keep an eye on the website for more details.
What’s in our Dementia Pathway?
Our Dementia Pathway is split into three sections and staff would be expected to work through it chronologically for anyone who is newly suspected of developing dementia.
Local teams move onto this Pathway once they’ve completed the Health Team’s Dementia Referral Document, which asks for key information about the person with suspected or diagnosed dementia. Local teams that are already working with the Health Team to support a person with diagnosed or suspected dementia will be guided to the most appropriate section of the pathway depending on the needs of the person or persons we support.
Step One:
This involves everything from liaising with a range of external healthcare professionals to completing our dementia e-learning. It also includes expectations around working with the person, their family, peers and friends, signposting to resources including Books Beyond Words ‘Ann has dementia’ and our own MacIntyre ‘Vince has dementia’ resource, refreshing health recording and support planning for teams, PBS support, healthy lifestyle advice, attending your local memory café, and reaching out to local and national sources of best practice advice, including Admiral Nurses.
Step Two:
This involves bespoke support, detailed below, and could include in-depth topic-focused learning for staff around key areas that we know help when supporting a person with suspected or diagnosed dementia. This includes creating a dementia-enabling environment, life story work, meaningful engagement, the creation and ongoing use of top 10 lists and ensuring best practice is being followed for the person’s circles of support. It also includes follow-up for everything in Step One.
Step Three:
This involves formal training sessions looking at all aspects of support after a person is diagnosed with dementia. This includes everything from early stage interventions to end of life support. This would be offered alongside the continuation of Step Two support.
Nicola Payne, MacIntyre’s Best Practice Manager for Health and Families, says of our Dementia Pathway:
“At MacIntyre we know that the road to receiving a diagnosis of dementia can be difficult and at times delayed due to the person’s learning disability being the reason that a person could be experiencing changes with their health (commonly known as diagnostic overshadowing).
Our Dementia Pathway offers a clear structure for a support worker when supporting a person that they believe may be developing dementia from the very beginning of seeing the most subtle changes, as evidenced through the person’s health recording. This pathway will empower staff teams to act as quickly as possible and not miss out any steps that may rule out other potential changes, such as a UTI or delirium, and many other symptoms that can be mistaken for dementia.”
Our bespoke support offer for MacIntyre teams
For many years we’ve provided bespoke support for MacIntyre teams where someone is living with suspected or diagnosed dementia. This has been provided by our Health Team in conjunction with our external dementia consultant, Beth Britton, and our nursing colleagues.
Beth wrote about her support visits with Nicola Payne to two of our local teams in 2023, and that support has remained ongoing. We’ve worked on refining and modernising our approach with another MacIntyre team where Nicky and Beth have provided an innovative model that alternates between virtual and in-person support.
Beth Britton, External Dementia Consultant, says:
“The offer of bespoke support is now formally documented in Step Two of our Dementia Pathway and it does exactly what it says on the tin. We would begin by running a scoping exercise - listening to the staff team to understand their reality and what support they feel they most need. Future online sessions or in-person visits are then planned to provide education and advice around the most pressing issues that were identified in the scoping exercise, all the time ensuring we create a safe space for staff to talk honestly and openly about their concerns or the things they are struggling with.
We provide actions and creative ideas to try, knowing these won’t all work but inspiring staff to keep trying to find the ‘lightbulb’ moments that help a person to live as well as possible. We also signpost to resources and further sources of support, and crucially we keep lines of communication open: staff teams can always contact us with queries or concerns and we will endeavour to support in a timely way.”
This approach enables the people who draw on our support to have the best quality of life possible, staff teams to feel informed and empowered, and for us to achieve key aims for individuals which are often around ensuring someone can remain in their home of choice as their dementia advances.
Nicola Payne says:
“Key in the second section of our Dementia Pathway is our offer of bespoke support on request when a team is either seeing changes within a person or supporting a person with dementia. By starting off with a scoping workshop the team are invested right at the start and they feel valued. We then provide ongoing tailored support to ensure a consistent approach, with signposting to good external practice so our learning grows and sits inline with wider best practice.
I believe that this tailored approach is vital for everyone to feel included and for staff to understand what they need to do to support a person to have person centred care.”
For any further information on the Dementia Pathway, please email: health.team@macintyrecharity.org
