By Sarah Giles, NIHR ARC KSS Digital Innovation theme public advisor
Up until April 2019, I was a carer to my mother with vascular dementia, while also studying for a BSc in Computing, Technology and Design with the Open University.
Just after completing my degree, my caring responsibilities sadly came to an end and, I decided to use my experience and knowledge to help improve the lives of those living with dementia and their carers and applied to become a digital innovation theme public advisor with ARC KSS.
Last year, I was invited to do a short presentation, at an ARC KSS Living well with Dementia and digital event. Knowledge sharing is an integral part of research and essential for continuous innovation, so my personal experiences and research on dementia-friendly technology formed the foundation for my presentation.Dementia-friendly technology
Every person with dementia should have the opportunity to benefit from technology that is appropriate for their needs. Dementia-friendly technology not only needs to complement the care for people living with dementia but, at the same time, it must improve their quality of life. This is something the Dementia-friendly technology charter, launched by the Alzheimer's Society in 2014, aimed to address, with their view on Assistive technology.
However, designing technology for those living with dementia can often be complex, as it all depends on the stage of cognitive decline. That's why it is important that their needs are reflected in the research methodology. For example, for someone in the early stages of dementia, who is still living at home, face-to-face interviews are possible whereas, in the latter stages, immersive research methodology needs to capture the emotional experiences of those living in care homes. And, let's not forget those with young onset dementia who may want to try something new, so technology needs to be able to also assist them too.
Dementia individuals’ requirements
The people who took part in the Alzheimer’s Society's Dementia research voiced three, top individual requirements of technology: a wish to do something they liked; fewer functions and visual / auditory stimulation.
However, it's important to remember that, not all dementia patients are interested in using technology. And, fast forward a few years from now where we could expect more people using technology much earlier in their lives. Smart, self-monitoring, analysis, and reporting technology such as smart watches will require input (co-design) from those living with dementia to make them intuitive to use.
Carers' requirements for technology
Carers, on the other hand, have different priorities and technological requirements to those living with dementia.
Some regions in England appear to have better support than others. Carers need information on dementia services and support to be easily accessible; to help reduce the burden, rather than having to search for this data.
Local health authorities’ websites need to have a dedicated area for dementia carers seeking advice, including respite options. And, personal data from both the carer and those living with dementia needs to be protected.
People living with dementia need some form of support on receiving diagnosis. GPs currently provide leaflets and memory clinic appointments but, from a carers' perspective, they are insufficient and memory clinics are unpopular. Any communication technology needs the flexibility to adapt to users’ needs at every stage of their dementia journey.
There are plenty of products out there, yet none of them address the personal perspective of an individual.
Although technology can sometimes be frustrating, the right tool can be beneficial for someone living with dementia if they struggle to concentrate, retain information and have problems reading. What they need is an interactive product that is easy to use. According to the Alzheimer's Society ‘visual or auditory stimulation’ can benefit progressive dementia suffers, so any interactive product needs to engage the users’ visual and or auditory senses. Dementia patients need something they like, something they can relate to. My mum loved music, so anything that provided music bought her joy, it is all about creating moments of joy from the carers’ perspective.
Currently, most technology requires input from the carer. There is a requirement for technology to be simple, especially in the early stages, so people living with dementia have some independence and retain it. Also, there is a lack of websites supplying localised information, although the Alzheimer’s Society provides some according to your postcode.
Most products are either aimed at those in the early stages or for use in a care home. But, in order for a product to be truly effective and dementia-friendly, it needs to put the user at the centre of its design and consider: its accessibility for people with impaired vision, hearing and dexterity, while avoiding sensory overload. It needs to take in to account the setting in which the person will be using the technology and must be adaptable to the person's deteriorating cognitive capabilities.
There is no doubt that there is yet a lot of work to be done in this area. But, I am excited to say that I am now working with the ARC KSS dementia, digital and co-production themes on the research and co-design of a dementia wellbeing tracking tool. The aim is to design a digital tool that people with dementia and/or their carers can monitor their wellbeing after a dementia diagnosis, that will help improve the lives of over 67,500 people across Kent, Surrey and Sussex who are currently living with dementia.