Alzheimer's Society Innovation Hub

News

Find updates about our projects and the Alzheimer's Society Innovation team right here

Categories

Taking on coronavirus together!

Posted by Natasha Morgan (Admin) 7 months ago

A month ago, we would never have guessed we would be building solutions to support people affected by dementia through a pandemic, yet that is where we find ourselves.

The spread of coronavirus has changed all our lives, but the impact has been felt particularly strongly by those affected by dementia, many of whom were already vulnerable and isolated. At Alzheimer’s Society we’re doing all we can to focus our resources on supporting those who need us through welfare calls, online information and influencing relevant organisations.

As innovators, our team have been keeping a close eye on the way both Alzheimer’s Society and wider society has adapted to deal with the situation.

We all must adapt and find new ways of doing things. This is what innovation is all about.    

We have had to change how we work as a team, pausing some projects in order to focus on coronavirus, and finding new ways to do things online. This week, we brought together 16 people for a virtual ideas workshop to come up with potential solutions to address continence issues. Normally we would hold this in a room with tables, flipcharts, and plenty of post-it notes, so the online format was a first for us.

More widely, we’ve been inspired by the speed  and creativity with which communities have rallied together. From mutual aid groups to clapping for key workers and spreading hope with rainbows in windows. 

As always, we want our response to the crisis to be grounded in what people affected by dementia want and need so we can create an effective solution, together.

This begins with the latest activity on the innovation hub: COVID-19 and dementia - your challenges.

Visit the activity page and share the challenges that you are facing now, as well as your concerns for the future. Comment on other people’s posts. Vote to show what matters to you. Share any opportunities you know of for us to collaborate with other organisations to produce solutions which work.

          Let’s take on coronavirus together!

                      

Innovation update - April 2020

Posted by Natasha Morgan (Admin) 7 months ago

The Innovation team were kept busy during the first few months of 2020. We brought the hospital project to life and challenged our misconceptions about continence issues.

Unfortunately, the onset of the Coronavirus pandemic has required us to shift priorities to ensure all people affected by dementia get the support they need at this challenging time. We’ve put these projects on hold and look forward to picking-up where we left off when things get back to normal.

For now, we would like to share where we are up to…

How might we ensure people affected by dementia get the immediate support they need to leave hospital safely and without delay?

Our solution, the Hospital Journey Tracker emerged from a series of ideas workshops involving 7 people affected by dementia and 25 health and social care professionals. We came up with 100 ideas overall. After several rounds of shortlisting the Hospital Journey Tracker was felt to be the solution with the potential to make the most immediate and significant impact for people affected by dementia.

The Hospital Journey Tracker is a system which emails status updates to a named patient representative to inform them of what is happening now and what is expected to happen next in a patient's care. These updates might include that a patient is undergoing medical treatment, having tests, or that planning in taking place for discharge. We found people leave hospital quicker when they’re well supported by a carer or loved one that is kept informed, able to assist in in hospital assessments and to plan for discharge arrangements. We hope in making processes more transparent, the updates will facilitate conversations between people supporting someone with dementia in hospital with health professionals. From our feedback, people affected by dementia saw the impact this could have and professionals could see how efficient this could be in the future.

To build the tracker, we teamed up with Luton and Dunstable University Hospital (L&D) and our software partner called Phew!. L&D and Phew! were already working together to build a patient discharge management system. This helped accelerate the development process as we could build on the existing system, rather than having to create a new one from scratch. We worked as a close team throughout, taking the lead from Yvonne, Dementia Nurse Specialist, on what would be valuable yet practical to implement in the hospital setting.

Once we had an outline of what the tracker might look like, we went back to people affected by dementia who had been involved previously. We asked them to feedback on the wording to go in the status updates, and on the information sheets which will be handed out to patients and their families during the pilot. Now, all that was left was to build the tracker itself and to launch the pilot in the hospital.

A prototype of the email update: 

                                                

Unfortunately, the coronavirus pandemic hit just as the software development was due to begin and as demands on the hospital increased, we had to postpone the project. It’s a real shame as Yvonne at L&D agreed that something like the tracker, which allows people to be involved with a patient’s care from a distance, would have been so valuable in this time when people are not allowed to visit their loved ones in hospital. This only spurs us on even more to make sure it gets built in the future.   

                                            

Continence and going to the toilet

Back in November, we selected ‘Staying dry – continence and dementia’ as the topic for our next project.

Continence and going to the toilet is a taboo topic that doesn’t receive attention, so we wanted to open up the conversation and look for new ways to support people affected by dementia. Once we started learning about the topic area, it very quickly became apparent just how significant it is.

Compared with people without a dementia diagnosis, people with a dementia diagnosis have approximately three times the rate of diagnosis of urinary incontinence, and more than four times the rate of faecal incontinence. This can be related to problems with the bladder and bowels or related to symptoms of dementia such as not being able to find or recognise the toilet.

We investigated the topic by reading over 30 documents and speaking with 27 subject experts, and seven people with personal experience. We also spent a day observing in a care home, and even bought some pull-up continence pants for ourselves.

Our research identified three key themes:

1. Promoting continence – helping people stay continent is really important, but staff and families aren’t aware of how to do this, and too often incontinence pads are used as the first rather than last resort.

2. Managing incontinence – when people do need containment products such as pads, they should be the right product for the person, and of a sufficient quantity for them, but too often people aren’t receiving the best product for them, or enough of the products to adequately meet their needs.

3. Stigma of continence issues above and beyond the stigma of dementia means that many people don’t seek help until they reach a crisis. Stigma can be exacerbated by healthcare professionals who sometimes consider that continence problems are just to be expected amongst older people, especially people with dementia. These attitudes go against expert guidance and can prevent people from getting adequate support

In March, we moved into the Find stage where we look to find solutions. We were determined not to let the Coronavirus pandemic stop us, so instead of our usual face to face ideas workshops, we held two ‘virtual’ workshops, involving 14 people with a mix of personal and professional experience. This was the first time we had done this, so we were pleased that it worked so well. We were spurred on by the passion of everyone in the session who produced some excellent ideas.

             People holding workshop on zoom

We will be posting these ideas on the Innovation Hub and asking you to vote and comment on which you think we should develop further. There may be a delay in us moving to the next stage while we focus on innovating to support people affected by dementia through coronavirus.

 

There are over 850,000 people in the UK living with dementia. Some of these people are LGBT+, yet a previous innovation sprint revealed how many aren’t getting the support they need.

Everyone’s experience of dementia is unique, but there are many additional challenges that LGBT+ people affected by dementia face, such as:

  • LGBT+ people with dementia may experience past memories more vividly than recent ones. They might believe they are living in a time in which being LGBT+ is still illegal and fear repercussions.
  • Trans people with dementia may also experience stronger memories of the time before they transitioned. This can make day-to-day activities, such as dressing and using the bathroom, confusing and distressing.
  • Some LGBT+ people may experience stigma, and fear discrimination when sharing information with health and social care providers.

Alzheimer’s Society worked together with people affected by dementia, national and local organisations and LGBT+ communities in the development of the Bring Dementia Out innovation in 2018 to 2019. The aim of Bring Dementia Out was to help LGBT+ people affected by dementia feel more comfortable in coming forward to access the information and support they need. A number of resources were developed and tested over a two-month period in Brighton and Hove and in Greater Manchester. This included a video sharing people’s experiences, and a booklet and webpage with steps on how best to support people and signposting to useful organisations and information.

Bring Dementia Out saw great results thanks to the dedicated working group, which included volunteers with lived experience, Alzheimer’s Society colleagues and the partner organisations. Together, they reached LGBT+ people affected by dementia and also helped to increase awareness and understanding of the challenges faced within the communities and amongst health and social care professionals.

One of the biggest achievements is that they key organisations involved are now taking the innovation forward to lead on scaling it at a wider level. This includes LGBT Foundation, the National Dementia Action Alliance, The Guinness Partnership, the National LGB&T Partnership and Switchboard.

If you want to find out more about Bring Dementia Out, visit the LGBT foundation website, or contact the Bring Dementia Out Programme Coordinator, Claire Days, on claire.days@lgbt.foundation.

LGBT+ flag with two people in United Against Dementia T-shirts

After the Dementia Friendly General Practices Project in Nottingham and Derbyshire came to an end back in 2018, we were aware that there was a need to explore this area further and so with what we had learnt from that project, we set out to identify the challenges General Practices and people affected by dementia are currently facing. Michelle Davies, Senior Innovator, has written this blog to update on progress, and ask for feedback on two prototypes (details at the end).

Keen to take on this new project, the Innovation Team started researching this area and began by applying the LIFE model of innovation. In keeping with our approach to innovation​ ​we began by identifying the challenge and then framing this as a question:

‘How can we help General Practice to better meet the needs of people affected by dementia and better understand pathways to further support?’

We wanted to ‘learn’ about the work that was already taking place within General Practices for the benefit of people affected by dementia across England, Wales and Northern Ireland. We needed to research over 20 existing projects and contracted service provision involving General Practice and a range of organisations. Our aim was to delve into what seemed to be working well within those projects, what wasn’t working so well, what was surprising and what we wanted to explore further through interviews.

We were interested to learn about the range of work taking place, both short-term funded, time limited projects and also longer-term services commissioned by Clinical Commissioning Groups and delivered by Alzheimer’s Society or other organisations. This led us to interviewing a range of stakeholders and experts in this area, including Commissioning Managers, other dementia related organisations, NHS Patient Experience Leads, research fellows and more. By doing this we gained a greater understanding of the challenges faced by both people affected by dementia and General Practice.

We set out to ‘investigate’ these challenges further by speaking with GP’s, other General Practice team members and importantly people affected by dementia, to hear about their experiences when visiting their GP.

We have heard GP’s talk about the time pressures they are facing when seeing patients and how limited time makes it difficult to gain an insight and a real understanding of the impact that dementia is having on their patient’s life.

GP’s and people affected by dementia also spoke about wanting to know what happens next, who does what and when, from pre-diagnosis to end of life. Some GP's shared their thoughts about how difficult it is to signpost and/or refer patients on to suitable services when they have little knowledge of available local and national services for people affected by dementia.

In total we have spoken with 115 people to gather a range of insights. Some other themes to arise from our discussions with GP’s and people affected by dementia focused on: issues with continuity of care; multiple GP’s involved in a patients care; annual reviews requiring greater consistency with a person centred approach; greater knowledge and understanding of dementia; limited dementia training; difficulties managing expectations; timescales for referrals to memory clinics; social prescribing being seen by some as the answer for all and many more thought provoking points.

 

workshop at Alzheimer's Society

On hearing the challenges faced by GP’s and people affected by dementia, we started to think about how we could ‘find’ solutions to help both GP’s and people affected by dementia.

During our creative thinking workshop, which involved people affected by dementia and a range of professionals, we started to develop ideas for solutions for the challenges and then we asked people to vote for their top three solutions.

GPs workshop

 

After gathering feedback from over 70 people on the top solutions, we are pleased to share that we now have 2 solutions, which have made it through to the ‘experiment’ stage and have been developed as paper prototypes. They are the Dementia Journey Map and Annual Dementia Appointment for General Practice Teams. We would love to have your feedback on these prototypes, which will help determine the next steps such as testing in the real world!

Dementia Journey Map

Annual Dementia Appointment for General Practice Teams

Many thanks

Michelle Davies,

Innovation Team

 

Our most recent sprint project is all about preventing people getting stuck in hospital longer than necessary. We're especially excited about tackling this challenge as it's the first that came from this Alzheimer's Society Innovation Hub – chosen after suggestions and votes from Alzheimer's Society employees and volunteers.

After some initial reading about the topic, we developed a clear statement of our challenge: 

How might we ensure people affected by dementia get the immediate support they need to leave hospital safely and without delay?

Tim from the Team in one of the hospitals we visited

We started the sprint in June 2019 and in the first two phases we learnt as much as we can about the challenge from desk research and interviews with experts, and we investigated it further by talking to people who would benefit from a solution and visiting the places where we want to make a difference to immerse ourselves in the topic.

The way people have given their time and shared their knowledge that will help us tackle this challenge has been hugely motivating and given us really useful insights.

W​e have read over 60 documents on the topic, visited 5 hospitals, spoken with 14 people with lived experience of dementia and over 60 health and social care professionals (from front line staff to clinical commissioners).

We've found that this is a complex area and there is a lot already going on to make improvements. At the start of September we had a session to bring together all of the information that we have heard and analysing it to find the key themes. We are now identifying the areas we think we should focus on in the next stage of the project.

Team synthesising what we've learnt so far

Our next steps will be to work together with professionals and people affected by dementia to look at these areas and find possible solutions to then build on and develop further. We are open to a range of solutions – it could be something for Alzheimer's Society to do, for us to work in partnership to deliver, or to enable other organisations to do, but it needs to be feasible and scalable. Whatever we develop, we will carry out an experiment to test it out in the real world allowing us to constantly improve and discover whether our solution has potential to be effective on a large scale.

We are excited to see where this project will take us. Meeting so many people who are working hard and are keen to continuously improve the experience of people affected by dementia has given us a real optimism and motivation to find a way we can help in this area too.

We're looking forward to keeping you up to date with our next developments!

 

Load more