Patient-centred care innovation in dementia: a conversation with Neil Maiden

Liz Inskip | 18th January 2017

In January 2016, Head of Customer Experience Elisa del Galdo gave a talk at UXPA UK’s monthly event about user experience in healthcare. One of the other speakers that evening was Neil Maiden of City, University of London, talking about his work developing mobile technology solutions for residential dementia care.

Content Marketing Manager Liz Inskip interviewed Neil about his work in dementia, and what the challenges facing innovators in this therapy area are.

At the beginning of last year, you gave a talk at UXPA UK about your project working with carers for people with Alzheimer’s type dementia – can you tell us a bit about what motivated you to do this work, and how it’s going so far?

Most people, when they innovate for this therapy area, think about giving technology to the older person with dementia as the primary user. But the primary determinant of quality of life is the people who care for them; nurses and carers. You get more purchase if you give the technology to the nurses and carers. Giving technology to older people will always have limited use, especially with the current generation of older people, who didn’t grow up with it.

Our work is about empowering carers to give more person-centred care. Care must be specialised and individual to the backgrounds of the people they’re caring for, and the mobile app we developed enables carers and nurses to spend more time providing care by reducing the amount of time they spend on paperwork and writing daily care notes.

When we started out in 2009, something we learned early on was how little IT there was in care homes. Care homes were almost a greenfield site from a tech perspective. There is very little use of IT around supporting care and carers, and in that, we saw some interesting opportunities to tackle an unmet need.

From a more personal perspective, as a group, we are all intellectually curious people with a wide variety of professional backgrounds and industry experience. Working on a project like this offers a unique opportunity to have considerable social impact. It immediately enhances people’s lives at a critical juncture for them – the end of life. That’s very rewarding.

As for where the project is now, the work shown at UXPA UK hasn’t advanced much. We’re working on getting more artificial intelligence into the application to help relieve the admin burden facing carers and nurses. One of the primary pain points in the care sector is the sheer volume of admin – carers and nurses spend approximately 50-60% of their time documenting what they’re doing to meet regulatory demands. This is time that could be spent providing better, more personalised care. We want to tackle this issue by bringing an AI element into the documentation process, engaging carers in an intelligent dialogue to better inform while reducing admin hours.

What else are you working on at the moment?

We have started a new project which is Innovate UK funded in partnership with Evalucom Consulting. We’re pursuing the idea of building a digital book for capturing experiences, thoughts, and reactions of visitors to residential care homes.

At the moment, various CCGs and hospitals can share quantitative data from care homes (for example, number of infections, deaths, or injuries on site), which is aggregated and used to identify where problems might be. However, it misses out qualitative data about the quality of care being administered. Care homes have hundreds of visitors per week – from nurses and cooks to family members and volunteers – and we learned that the best way to learn about life in a care home is to talk to a handful of trusted visitors about it.

This project is very early, though!  We’re building wireframes and prototypes in the next three months, but we only started the project 10 days ago. Watch this space.

How do initiatives and therapies “beyond the pill” contribute to improving patient outcomes?

There has been an overreliance on medication as the key therapy for treatment, particularly for end of life treatments and care. Digital technologies have the capacity to provide the information and guidance that a carer needs at the right time to individualise the care given to somebody to enhance the quality of their life.

And this is true not just of people with dementia – anyone in hospital wants care tailored to them. There are many small-scale care actions and events that can be undertaken to improve quality of life – for example, knowing one person likes to have the radio on instead of daytime television in their room, or that another person needs their environment to be as quiet as possible – especially for people who are unable to control the environment around them or communicate their needs clearly (such as older people with dementia).

Care is also not exclusively about hospital and care home environments. This kind of personalised care can be delivered by family members, but it requires the right support and resource to understand the real need. Why does someone react a certain way to certain stimulus in their environment? The objective is to improve a carer’s understanding about what someone wants at the end of their life on an individual basis.

When we understand a person with dementia properly from the outset, many of the medical solutions don’t become necessary. This is where treatment becomes more about prevention and less about care after the fact. If we can stop people finding themselves in the position where they need care in the first place, we can dramatically improve their quality of life. If we can improve quality of life and understanding in someone’s 50s and 60s, we can stop them ending up in a state where full time care is required in their 70s or 80s.

When we talk about therapies beyond medication for conditions like Alzheimer’s, the lack of commercial support for these initiatives often comes up. What, to you, should commercial support for these kinds of endeavours look like?

Good question. It’s extraordinarily difficult to deliver this kind of support as a commercial business. Margins are so low, that you cannot turn a profit in the care sector.

Trying to get finance for something that is seen as indirect or secondary support is difficult. Services and IT providers are only willing to provide funding when there is a clear ROI.

We, as a society, need to focus more on prevention rather than care. There is a win-win in keeping people in their own homes for as long as possible. Not only are people generally happier, but also the costs to the state are lower, allowing more effective use of these resources, so we need to keep people out of hospitals in the first place. However, the system isn’t set up for that.

What plagues the sector is that it’s very difficult to tackle prevention, despite the fact that the biggest cost savings are to be had there.

 

 

Many thanks to Neil for taking time to speak with us – we look forward to seeing more about his recent work later this year!

Read more about the funding gap in Alzheimer’s, and the current treatment horizon by clicking the button below.

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