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Reaching people without Internet access

What about supporting people who are needing to ‘shield’ or ‘self-isolate’ but who don’t have access to The Internet? From previous projects and pieces of work, we have found that this can often be a challenge anyway, for example in terms of accessing information, but with the current pandemic and a lack of social interaction, this could make it even harder for people as a lot of the solutions for social interaction are using The Internet, such as video calls. How can we reach those who...

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Getting a dementia diagnosis during a pandemic

We know the difficulties in getting a dementia diagnosis for people at the best of times. We know in pieces of work that have taken place that it can be harder for people to receive a diagnosis. For example, in England, it is estimated that there are over 210,000 people with dementia without a diagnosis, and diagnosis rates in local areas range from around 50% to over 90%. What about people who are currently needing to self-isolate or ‘shield’ without a diagnosis of dementia? How can they...

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How do we keep connected to those in care homes in 'lock-down'?

Currently, there are many people out there with a loved one in a care home – what do they do when the care home is in 'lock-down'? What can they do if they can’t see their loved one? And what about if their dementia develops and they won’t recognise them a few months down the line? How can we best support people in this situation?

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People affected by dementia have been amongst the worst hit by COVID-19 in terms of their health and wellbeing. Our ‘supergroup’ of Alzheimer’s Society’s Innovation team, the UK Dementia Research Institute (Care Research and Technology Centre) and the Association for Dementia Studies (University of Worcester) have been working together to help people affected by dementia to feel less isolated and better supported.

What is a Community Maker?

A Community Maker is anyone with experience or interest in setting up online communities and groups for people affected by dementia.

How can Community Makers help people affected by dementia?

By providing ‘Community Makers’ with the tools they need to set up or move their groups and communities for people affected by dementia online, we can help to increase reach, address people’s health and wellbeing, and reduce social isolation.

We hope this will be beneficial, not only during the current pandemic, but in the long term for people who cannot access face-to-face services and groups in their communities.

What have we been up to?

In our previous blogs on the project (29 May and 4 May), we shared insights from speaking with people affected by dementia and service providers around the impact of lockdown on them, and ways in which to help people connect.

Chris Maddocks, one of our Alzheimer’s Society Ambassadors who is living with dementia, said, ‘I’ve been thinking of it that this sudden lockdown is almost like a bereavement, because one minute you are being socially active, and you are doing lots of things, and the next thing – I was literally on lockdown.’

Since then, we have developed and co-designed two solutions that we now want to share with you:

  1. The Community Makers Network
  2. The Community Makers online toolkit

What is the Community Makers Network?

The Community Makers Network is a mutually supportive network for anyone with experience or interest in setting up online communities and groups for people affected by dementia. The network allows people to share knowledge, ideas and challenges with each other through online meetings and an online forum.

Community Makers on Zoom

Who might you meet in the network?
We have gone from 15 people in the original focus group to 50 Community Makers in the network, all who have been key in guiding the development of the project. We have been speaking with people from a diverse range of backgrounds, cultures and locations – from Swansea to the USA!

Community Makers you might meet in the network include: A Trustee of a Herefordshire-based dementia support charity, an Alzheimer’s Society Research Network volunteer with lived experience of supporting someone with dementia and extensive remote facilitation experience, a scientist exploring starting a group back home on Shetland, and a group facilitator supporting people affected by dementia from Black, Asian and other minority ethnic backgrounds.

CM members directory

Engaging with people running diverse dementia groups has been extremely valuable in understanding additional barriers being faced in moving online and to help ensure resources are accessible and culturally sensitive. This week, we spoke with people who run groups from within Black, Asian and other minority ethnic communities (including Irish and Jewish), LGBT+ communities and younger people with dementia. The importance of including people who do not have online access was clear from these conversations. ‘Within the Irish community and including travellers (but not unique to these communities), there is a very practical barrier. People may not have internet access and the technology, and cost is also a significant factor.’ This is something that we are working together to address through our online toolkit.

What is the Community Makers online toolkit?

The Community Makers online toolkit is a digital resource to enable people to move or set up dementia support communities online. 

Community Makers online toolkit

The content and design of our online toolkit for Community Makers has been informed by the insight and learning gathered from individual conversations and virtual workshops with people affected by dementia and the Community Makers Network.The toolkit has also been guided and co-created through the experiences of new ‘digital first’ support groups for people affected by dementia. Set up by our project partners, ‘Dementia Matters Here(fordshire)’ and the ‘UK Dementia Research Institute cohort’ have prototyped new ways of engaging and understanding the opportunities and limits of digital approaches.

What does the toolkit include?
The toolkit contains useful information and examples which people can take inspiration from and find something that works well for them in their setting, including:

  • Guides on various aspects of running an online meeting place or community centre (for example, how to include people who do not have access to technology)
  • A checklist on how to start an online community or group, signposting to useful resources.
  • Templates and ideas of different types of events that a group might hold.
  • Insights from groups that have set up online communities – sharing both successes and overcoming challenges to give people inspiration of what is possible.
  • A directory of members from the Community Makers network.
  • A blog space to keep up to date with the project.
  • A contact page to find out more and get involved.

The toolkit is now publicly available for you to take a look at
Please note that it is still in development, as we add to it from our continuous learning.

CM checklist

What might you learn?

Here are a few insights so far from some of our Community Makers. You can read more on our insights page on the digital toolkit. 

  • Preparation is key –  Prior to the session, ‘a talk with the person wishing to join-in, a simple written explanation of what to do (with pictures, if possible) and an end-to-end run-through of a meeting all helps.’
  • A hybrid approach – ‘Creating pre-recorded sessions with elements of personalisation is an effective way of including people at a pace and time that they are comfortable. And we have also found that the videos are beneficial and watched by a much larger audience.’ 
  • Keeping the group size small – no more than 12 participants. ‘We have had a couple of sessions where there have only been four participants and these have turned out to be some of the best we’ve run, with members really opening up about themselves, their lives and past careers.'
  • Helping to make getting online accessible – ‘Through a Community Makers discussion on the best approach, it was agreed the solution should include personalised, pictorial step-by-step how-to guides – device specific. These guides can then be printed and delivered to people in their homes for them to follow as a manual while learning how to use their device.’ This Community Maker has worked with another member of the network and together, they have developed a skeleton ‘how-to’ guide template for Android tablets to share and disseminate with others who need it.

What is next for Community Makers?

We want Community Makers to be used as widely as possible and we are exploring opportunities for scaling. We believe that resources like the Community Makers Network and the online toolkit will help improve and grow online provision and support many people who want to set up online communities but do not yet have the knowledge or confidence they need to do so.

The pandemic is still gathering pace, and there continues to be a high demand for digital support. We need long-term sustainability of online communities in preparation for future lockdowns, particularly as people affected by dementia are likely to be amongst the first to re-enter isolation if struck by future pandemics. We need to equip people with digital skills and understanding, through existing and trusted relationships. And when finally, face-to-face services are available, we need to remain connected with those who cannot access support in person. We need to accommodate an inclusive hybrid approach to support digital connection and physical meet ups so that all people affected by dementia feel less isolated and are better supported.

How to get in touch

  • Are you a ‘Community Maker’ and interested in joining the network and being part of this project?
  • Are you interested in helping us to scale ‘Community Makers’?

Please email us on hello@communitymakers.co

Many organisations within the third sector are needing to innovate. Nesta (an innovation foundation helping to turn bold ideas into reality and change lives for the better) wanted to find out if new partnerships with startups can help tackle some of the challenges that organisations are facing.

Earlier this year, we contributed to Nesta’s new report, ‘Better Together: How startups and the third sector can collaborate’, which was published in July. We talked about the learning and experiences from our Alzheimer’s Society Accelerator Programme, where we work with startups and invest in innovations and products to help improve the lives of people affected by dementia.

Nesta describes the report as 'the first of its kind to describe how third sector organisations and startups can work together for mutual benefit. Although collaboration is difficult to get right, there is much to gain when the two worlds align.'

The aim of the report is to help the third sector and startups:

  • Understand the value of collaborating and assess whether it is right for them.
  • Identify the necessary steps to prepare for, design and carry out collaborations – and the key challenges to anticipate.
  • Learn from the experience of others – featuring examples from our Innovation team’s work at Alzheimer’s Society, Friends of the Earth, the Children’s Society, Versus Arthritis and others.

Together we create

From this report, we will be looking at the recommendations shared and consider how we may integrate some of these to improve our innovation offer at Alzheimer's Society. For example, having a dedicated Innovation trustee could help in encouraging innovation further at the organisation. Someone with experience in this field and an understanding of the benefit of working with startups could help to champion the importance of innovation and new partnership opportunities across the organisation.

Through our Accelerator Programme, we have learnt a great deal from our partners with each bringing their own creativity and mix of skills to the programme, our team and organisation. By working with these startups, we can harness the development of new and exciting ideas, products and services that can help to improve more aspects of people’s lives and wellbeing. We encourage our partners to involve people affected by dementia by connecting them through our networks. Together, they build and test the innovations, making their end products more successful, accessible and beneficial to people affected by dementia. It is inspiring to see the passion that they have in making sure their creation gets straight into the hands of the people who need them most.

Want to find out more?

  • You can read more about our 2019/2020 Accelerator partners here.
  • If you have any questions about the report, please contact Charlotte Reypens at charlotte.reypens@nesta.org.uk.

As with anything in innovation, we are working quickly and responding to the changing needs and climate all the time.

In one of our last blogs, we shared that we’ve been working with the Helix Centre at Imperial College London (also part of the UK Dementia Research Institute Care Research and Technology centre) and Meeting Centres to innovate to help people affected by dementia remain connected and supported whilst in isolation.

At a time when face-to-face support services cannot take place in person, we want to help equip ‘Community Makers’ (people running groups or wanting to run groups online) with the tools they need to provide specialised, virtual support for people affected by dementia. Not only do we hope this helps people during the current pandemic, but in the long-term, we hope this will provide support to those who do not have or cannot access services and groups in their communities.

Through innovating virtually, we have been gathering insights from experiences of both people affected by dementia and group facilitators, and co-designing together as we want to ensure our solutions are based on their needs.

What are the key milestones we have coming up?

We are bringing together our ‘Community Makers’ focus group, and they met together for the first time on Friday 29 May. We have been discussing what would be most helpful for people who run services online and explore the current barriers in leading virtual groups and how to overcome these.

Screenshot of a zoom meeting with members of the Community Makers focus group

They are also feeding back on the solutions we are developing, which includes a web-based resource to help provide ideas, recommendations and guidance for people who are running groups. This may include support around: choosing technology, onboarding, different types of events for different audiences and purposes, online etiquette and good practice, how to include people without digital connection, governance and internet safety and so on. Within this, they will help to develop a community of ‘Community Makers’ to share insights, ideas and resources amongst each other.

Secondly, the Dementia Research Institute are engaged with a group of people affected by dementia who they are inviting to take part in piloting an ‘online community centre’. Whether they are interested in entertainment, arts and culture, physical exercise or looking for support and information, they will be able to join live group sessions and open discussions in the safety of their home through video and messaging functions.

We have our first ‘Coffee and ideas session’ coming up, which is being facilitated by one of our Alzheimer’s Society Research Network volunteers. From this, we’ll be able to get an understanding of people’s experience of being part of the online community centre and an idea of the type of sessions they would want to join in the following weeks.

Here is a mock-up of what an Online Community Centre may look like:

Online community centre prototype

In addition to working together closely with these groups over the next few weeks, we are piloting another online community centre with a new group of people affected by dementia being brought together virtually in Hereford in June (through Meeting Centres). This will all inform our ‘Community Makers’ solution which is looking to go live for people to visit at the end of July.

We’ll keep updating you as this piece of work progresses, and you can read more about this work through Helix's blog on Medium.

I am currently a Fellow for Zinc, a venture builder that runs a 9-month programme where entrepreneurs come together with the aim of building new social enterprises from scratch. Zinc aims to tackle society's biggest challenges using science to guide new ventures. Each programme has a mission. The current programme, which kicked off on 30 September 2019, aims to add five more high-quality years to later life.

Through this, I met two fantastic entrepreneurs, Michelle Cheng and Alex Rignall, who are co-founders of Provie, an early-stage, mission-led company building better incontinence solutions. It has been great to be connected on this piece of work, particularly as it tied in with an innovation sprint our team was leading on around ‘Continence and going to the toilet’, which you can read more about in our previous blog.

Now over to Michelle Cheng, co-founder of Provie.

The idea for Provie came about when we first met John and Evelyn, a couple in their mid-70’s living in North-West London. In early 2014, John was diagnosed with mild frontal lobe dementia and since 2019, Evelyn had become John’s full-time carer. We initially sat down with them to learn more about the challenges of being an at-home carer for a loved one. Evelyn is a strong, kind and knowledgeable woman who fell naturally into her carer role as she used to be a nurse. She detailed the balancing act of constant care, household tasks, paperwork, meetings and appointments, but while all these seemingly insurmountable tasks were manageable in her eyes, recently there was one thing that Evelyn painstakingly felt was the last straw. John had started to lose control of his bladder and bowels.*

The reality is, this is not uncommon for carers like Evelyn. Incontinence is one of the main reasons for people moving into care homes, but as we looked deeper into the prevalence of incontinence in society, we realised that this was a huge issue that affects at least 1 in 4 people in their lifetime. It also doesn’t discriminate, with people of all ages being affected.

The stigma around bladder and bowel leakages means that more than 50% of people never seek help. For those that do, the process is often convoluted and there is no easy and quick fix. People often rely on bulky pads to manage their condition, however current products are dehumanising and embarrassing to wear, leading to low self-esteem and social isolation.

Alex and I felt that for a problem of this magnitude, people deserved better. We’ve started our company with the commitment to empower people affected by incontinence in three ways:

  1. Better absorbent products that are highly functional and look and feel just like normal underwear.
  2. Accessible content providing support, education and advice on the topics that matter and aren’t being answered well right now. You can see this here.
  3. A community platform for people to share experiences, knowledge and support as well as a place to bring in experts to answer questions around identified topics.

The first product we have developed is disposable underwear for light to moderate bladder leakages (shown below), which we are aiming to ship to customers by the end of the year.

Provie

Our vision is for anyone experiencing continence issues to be empowered through innovative and inspiring products that help best manage their condition to suit their lifestyle.

Want to get involved in the development of this product?
We’re committed to working together with people affected by incontinence. We’re always open to listen to your experiences, so please share your thoughts with us at michelle@provie.co and let us know what you think needs to be done better or even just to reach out. We’d love you to follow our journey by joining our mailing list at www.provie.co.

*Please note, the experiences mentioned in this article are true but the names are made-up to ensure people are not identifiable.

We have had a fantastic response to our emergency COVID-19 activity on the Hub with people sharing their experiences in the current crisis and their ideas for innovations which could overcome their challenges. A theme which has come out strongly is how social isolation is impacting people affected by dementia in the community.

Through the Hub, we were approached by the Helix Centre at Imperial College London (also part of the UK Dementia Research Institute Care Research and Technology centre)  who have risen to the challenge. Together, we are working to support networks and communities to get online and create meaningful connections through “virtual community centres”. 

The concept of this ‘virtual community centre’ is an online meeting place where people affected by dementia can come together to take part in a programme of interactive events and discussions through technology with video-conferencing capabilities and messaging functionality. We are currently evaluating existing platforms to assess their accessibility, as a simple and intuitive interface is required. Different means of communication in addition to video is preferable to allow for varying degrees of interaction. Sessions and discussions could include an art class, music, physical exercise groups, peer support for carers, and informative discussions about dementia.

Our aim is to work alongside existing networks and recreate, online, the core functions of dementia services and groups which are usually delivered face-to-face. We also hope to bridge the gap between digitally connected and unconnected members by incorporating offline activities and a potential buddy scheme.

The team is working at pace to build and test this concept. We are co-designing it with people affected by dementia and also group leads from existing services. By listening to their experiences, we can ensure the virtual community centre meets people’s needs appropriately and effectively. We’ve already had various conversations and virtual workshops to understand current gaps, what has been working well, and what needs improving. Over the next week or so, people affected by dementia and group leads will be trying out the technology and a programme of initial sessions pulled together from the feedback received so far.

We are excited to be working together on this and will keep you updated as it progresses!

Helix blog 1

Over the last few weeks there’s been great discussions happening in the hub activity on COVID19. Thank you to those who have joined the conversation so far. The activity will remain open so please do continue to share any new challenges as they arise.

We have been sharing these insights on an ongoing basis with our colleagues from across the Society, who have been hearing similar stories through their own channels. Together, we are painting a picture of how coronavirus is affecting people affected by dementia and taking action to provide much needed support.  

As the coronavirus situation evolves, so does our innovation response. Here are just some of the actions we have taken so far:

We’re pleased to be collaborating with the Helix Centre from Imperial College London, to develop an Online Community Centre. This will address your challenges around isolation, lack of activity, concerns about losing skills and carer respite.

We have also applied for funding to develop a Dementia First Aid Kit – a tool to guide carers in times of crisis in order to avoid people going to hospital unnecessarily. This issue is not a new one, but its impact is particularly acute right now.

We are distributing 500 Google Nest devices to care homes across the country to help residents to stay connected with friends and family.

In response to concerns about people not getting the food they need, our colleagues are calling on government and supermarkets to ensure people with dementia are included in the increased risk category, so they can get priority access to food and medication.

They are also working with key partners in government, utilities, financial services and housing to make sure they protect people from scams

Finally, there is lots of work going on to share activities for people with dementia and their families to do at home. This includes working with partners including Sport England and Wildlife Trust.

As always, our priority remains to listen to the challenges that you are facing, and to design solutions together to help address them. Watch this space for opportunities to get involved in the coming weeks. 

Our Innovation team supported two projects through our Accelerator programme last year. You may remember reading about one of these in our guest blog back in September on the mobile video support tool, ‘Refresh’, by How Do I?

Refresh kit

Let’s find out a bit more from Taryl Law (from How Do I?) about the development of Refresh over the last few months, through their valuable work with the Refresh Test and Learn Group.

 

What is ‘Refresh’?

As a reminder, How Do I? is an assistive technology company that want to help people with dementia live independently at home for longer. They have developed ‘Refresh’, which is a mobile video support tool that can link helpful personalised videos to objects in the home. 

What has happened over the last few months?: Refresh Test and Learn Group

After some initial development of Refresh with people affected by dementia, 17 pairs of people (one person with dementia and a carer, partner or friend) signed up to take part in the Refresh Test and Learn Group: an at-home beta testing programme to help in the development of the mobile video support tool. Recruitment was open to people affected by dementia across the entirety of the UK. Seven pairs maintained engagement with the testing team over four months, up to the completion of the final feedback session.

This involved the Refresh product being posted to the homes of the members of the group, with some receiving loaned Android phones to test the technology. Some members received the product and demo phones through an in-person session at a location of their choosing, and these members were observed opening the packaging and setting up their Refresh account.

Throughout the duration of the group, a single dedicated member of the How Do I? team was in touch with participants for gathering feedback and troubleshooting. Testers responded well to this and often proactively contacted the team by email, phone or text when they ran into difficulty. Testing, troubleshooting and providing feedback was most frequently done over the phone, with the occasional set of questions answered over email or in-person. The feedback was gathered three times: the first session focused on the packaging and onboarding process, the second on the apps themselves, and the final session helped us to understand the attitudes and opinions of the members of the group after having used Refresh.

The How Do I? team are still analysing the data from the group in order to provide a full picture of findings from the testing. You can find out more detail about what the Test and Learn group did and further information on the key findings and learning in our downloadable document shared below.

In summary, some key findings emerged quite consistently and clearly across the group. These included:

  • More information and guidance could be provided on planning videos and testing out the technology.
  • Time invested in user experience testing is time well spent – most found the ‘user experience’ and design accessible.
  • The benefits of using the app outweighed the time and effort to get it set up.
  • Some found that taking part in the group increased their confidence in trying out new technology.

 Refresh quote

Key learning to takeaway

The How Do I? team have learnt a lot over the last 12 months, but particularly from the Refresh Test and Learn group. The three pieces of learning include:

  1. Make no assumptions about who is and isn’t open to using technology to improve their everyday lives: It is exciting that there is a large and vocal community of people living with dementia on social media. Through their engagement on platforms like Twitter and Facebook, they are able to educate the public, express their views and make connections with others in the dementia community. In addition, many people living with dementia today have had long and celebrated careers in technology. Alongside these communities, there are many others who are not as visible, but who also stand to benefit and take an interest in learning new digital skills. Throughout our testing and recruitment, we have worked alongside many people who weren’t immediately identifiable as being digitally included, “techie”, or otherwise likely to be interested in trying out and testing a digital product. We now have a core group of champions who are excited to share their experiences with Refresh across both their digital social networks as well as their real-life groups of friends, colleagues and contacts.

  2. Remote, unmoderated testing can successfully generate helpful insights and actionable feedback: For our early user experience research, we primarily worked with people face-to-face to engage with prototypes that helped us get our final product right. However, we were pleased overall with the quality and quantity of the feedback we received through the mostly-remote Test and Learn Group. Between phone calls, photos and surveys, it is our view that we have been able to get a good picture of what has worked well for participants and what requires improvement.

  3. Work as flexibly as you can without reducing the quality of the feedback: It was important to us that our group was as participant-led as possible. For us, that meant that we provided as much flexibility as possible for participants as it related to how, when and for how long we got in touch. We initially created a discussion guide and line of questioning for each of the feedback interviews. We established early on in the testing that our plans for each session needed to be abbreviated, as the sessions we had planned were overly long in practice. The interview questions were amended to reflect only the most important aspects of what we needed to know at each stage. Still, the discussions over the phone were as short as seven minutes and as long as 1 hour and 40 minutes. Some testers had taken detailed notes and had much to discuss, whereas others preferred a more off-the-cuff approach. These two approaches worked well together.

Thank you

Both the Refresh Test and Learn Group, and our Accelerator Programme experience as a whole, are now coming to an end, under highly unusual and challenging circumstances of the global outbreak of COVID-19. We want to express our gratitude to the members of the Test and Learn Group, who generously provided their time and insight in order to help us create a better product for people living with dementia. We are also incredibly grateful to Alzheimer’s Society for the opportunity and support. We are proud to have been able to work with such skilled and passionate colleagues and have benefitted immensely from your direction and advice. 

Refresh kit 2

From the Innovation team’s perspective, it has been fantastic to ‘buddy-up’ and work alongside How Do I? in the amazing work they have been doing with Refresh to help improve the lives of people affected by dementia.

How Do I? are looking to work with other partners to take their exciting mobile video support tool forward. They are also seeking follow-on investment to bring ‘Refresh’ to market. To find out more, please do get in touch with Taryl Law at taryl@wearehowdoi.com and you can check out their website too: https://wearehowdoi.com/refresh.

 

 

If you are supporting someone with dementia in hospital and getting frustrated with things moving slowly, you are not alone. We look at some of the key challenges faced by people affected by dementia in hospitals as they move towards discharge, and what can be done about them.

Hospital bed

On average, people with dementia stay in hospital around four times longer following a fall than those without dementia. This isn’t acceptable, so Alzheimer’s Society’s Innovation Team is doing something about it. 

We’ve heard about excellent initiatives going on to prevent people with dementia staying in hospital longer than necessary. Unfortunately, we’ve also heard many stories of where things could have been better.

But where there are challenges, there are also opportunities.

That’s why we’re working with people with personal experience of hospital admissions, as well as health and social care professionals, to find new ways to prevent people with dementia from being kept in hospital longer than necessary. 

What are the challenges for people with dementia in hospitals?

1. Communication breakdown

Time and time again we heard how a breakdown of communication in hospital can slow things down. This can be because of the ways information is passed between someone living with dementia, those who support them, and health and social care professionals.

People told us they didn’t always feel confident asking for the information they needed. Wards are busy places, and it can be difficult to find the right person to speak to.

What people told us:

“I don’t know what I needed, but I didn’t get it.” (Person living with dementia)

“It can be easier to get a CT scan than reach the family and get a good history.” (Consultant)

“I don’t think either doctor was wrong, but who was most right?” (Family member)

What can help?

Preparing questions for health and social care professionals in advance and having a named person to speak to can take away some of the stress.  

2. Access to care services

While we know there is a shortage of community care services, where they do exist there are other issues which can prevent people accessing them following a stay in hospital.

Poor access can stem from a lack of knowledge of the available options, or a misunderstanding of the support that might be appropriate for people living with dementia. Additionally, there are assumptions that people with dementia need to go into a care or nursing home in cases where simple adaptations could allow them to stay in their own home.

What people told us:

“They wouldn’t offer him rehab after his stroke. They said, ‘we don’t set targets with Alzheimer’s.’” (Family member)

“The night-sitting service isn’t appropriate for people with dementia. They come twice a night, it’s confusing.” (Physiotherapist)

What can help?

Do your researchwell in advance of leaving hospital, so you can make an informed decision on the support you’ll need. Check out the advice on our website. 

3. Avoidable delays and late discharge

There can be practical delays on the day of discharge with forms, medication and transport.

Both people with lived experience and professionals told us of times when things had not gone smoothly on the day of discharge from hospital. These included long waits for everything that needs to be put in place. For example, a person with dementia was fit for discharge at 5pm on Friday but had to stay in hospital for the weekend as there was no transport available.

More concerning is that we heard of people with dementia being sent home late at night, without appropriate clothing, and without the support they need to settle into their environment. This can be disorienting, and sometimes leads to people being readmitted to hospital. For this reason, best practice is to prioritise people with dementia, so they get discharged before midday.

What people told us:

“It’s not a rule, but I like people to be home by 6:30pm as doctors aren’t around in the evening and it is when the care team changes over.” (Care home manager)

What can help?

Unfortunately, much of this can be out of your control.Why notencourage your local hospital to sign up to the Dementia Friendly Hospital Charter to improve care for people living with dementia? 

4. Inactivity

The longer someone with dementia spends in a hospital bed, the more they lose their physical strength, cognitive ability and personhood.

Small activities can make a real difference, but all too often staff on the ward do not have the time or facilities they need to keep someone active. Often this falls to family and friends, which adds further stress to what is already a challenging time.

What people told us:

“I understand why they spiral into aggression. They’re just bored. I wish we could do more on the ward” (Nurse)

“Often the reason for admission is not the reason for their decline” (Social worker)

What can help?

Many dementia wards now sign up to John’s campaign, which advocates for carers of people with dementia to visit throughout the day to support a person if they can, however and whenever necessary. 

What we’re doing to improve hospital experiences for people affected by dementia

We’re kicking off 2020 by building and testing a potential solution together with people affected by dementia and professionals. Watch this space for an update and more learning in the Spring. For further information, email innovation@alzheimers.org.uk.  

‘We started a conversation about something that we were told is just not talked about, but we and many others have been talking about it ever since. We hope that sex, intimacy and relationships will no longer be seen only as a problem or a behaviour that needs to be “managed”, but as a human right to be respected and supported.’ (Beverley Page-Banks, former Innovation Team member)

In 2018, the Innovation Team embarked on a challenge with Good Innovation to help understand the experiences of people with dementia, their families, and staff in relation to sex, intimacy and relationships, and develop and test an effective solution to reach the unmet needs.

Together with people affected by dementia and other health and social care professionals, we developed Lift the Lid: a ‘workshop in a box’ for care homes to run their own sessions to help embed and create a new internal culture around sex, intimacy and relationships.

In October 2019, we received an international Service Design Award. We would like to thank everyone involved in the development of Lift the Lid, including the people affected by dementia involved, and the care homes who helped to test Lift the Lid (Bupa, Four Seasons, and St John’s Trust).

Lift the Lid open

Why the topic of: sex, intimacy, and relationships?

Traditionally, going into a care home is about focussing on the health care needs of a person, but in doing so, other personal and less visible needs, including sex, intimacy and relationships (such as holding hands, having a cuddle, sharing a bed) may become unmet.

Some care staff had said they had never considered residents’ sex, intimacy and relationship needs at all. Others said they didn’t know how to broach the topic and were concerned about issues of consent or lacked clear guidance.

We learnt from speaking to care home staff that they wanted to get this right but didn’t know where to start.

What is Lift the Lid?

We worked with care homes to create a ‘workshop in a box’ to challenge staff perceptions and behaviours through three creative activities.

The pack provides everything needed for care homes to run their own session(s) and can be delivered over two to three hours either at once or in individual modules and includes:

  • challenge perceptions around sex, intimate relationships and people affected by dementia
  • provide a framework for respectful management of in-the-moment situations
  • help align on a shared set of values and actions for your care home.             

‘Lift the Lid normalises a conversation that is needed but kept hidden. The activities give staff the understanding, ability and confidence to respond in an appropriate and respectful manner, and to not react out of embarrassment and fear,’ she says. ‘It will help us to provide dignified care.’ (Care Home Unit Manager).

Lift the Lid care home

What’s next for Lift the Lid?

We launched Lift the Lid in November 2018 at the National Dementia Congress in Brighton where it became available on Alzheimer’s Society’s Online Shop.

Since then we have received orders for over 190 units, the majority of which have been delivered to care homes across the UK and even in Australia! Based on the care home orders we have received so far; we have established that Lift the Lid has a potential reach into 682 care homes across all of the care groups who have already purchased it! Some of our other orders have gone to specialist memory services, NHS teams, community care providers, councils and universities.

We recently co-presented Lift the Lid at the National Dementia Congress on Thursday 7 November with Jenny Davies, Head of Care and Nursing at Sunrise Senior Living and Gracewell Healthcare. At present, Sunrise Senior Living and Gracewell Healthcare have tested Lift the Lid across their homes in the South West, with positive feedback and a noticeable impact highlighting cases, which needed further support. They now plan to roll out Lift the Lid across the remainder of their 46 care homes from December onwards!

We would really value feedback from people who have ‘Lifted the Lid’ on our workshop in a box, so that we can understand more about the impact of Lift the Lid on you as an individual, your organisation, possibly others you work with and people affected by dementia. We are also interested to hear about whether there are plans to roll Lift the Lid out further within your workplace.

Feel free to share your experience of Lift the Lid by emailing the Innovation Team at innovation@alzheimers.org.uk. We really would love to hear from you!

Further information

  • Please note: We would never encourage care homes to adopt blanket tactics around sex and intimacy, or to do anything that would put residents or staff at risk. Instead, Lift the Lid helps care home staff to create their own policies based on individual need and consent.
  • Find out more about the development of Lift the Lid.
  • It is available to purchase from Alzheimer’s Society’s Online Shop.

Natasha Howard

London, United Kingdom

Joined this community on Sep 17, 2018

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Chief Policy and Research Officer

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