Memory loss is often the first thing that comes to mind when people think of dementia. It's associated with old age, with forgetfulness. However, in reality there are a wide range of symptoms and behavioural changes that occur with dementia, one of the most impactful being changes in sleep. It is common for people with dementia to wake many times during the night, to be disorientated when they wake up, and for this to interfere with their natural 'body clock'.
This doesn't only affect the person with dementia, but their family or carer will have disturbed nights too. The resulting tiredness can make the challenges of caring for a loved one with dementia all the more difficult. We all benefit from a good night's sleep!
How 'wearables' may help with sleep patterns
Together with the EPSRC and the Alzheimer's society we recently ran a workshop investigating sleep disturbance in dementia. Our aim was to scope the opportunities for new engineering and physical sciences to promote better sleep quality. While wearable technology is starting to allow at-home sleep monitoring, there are significant challenges in ensuring devices are fit for purpose by people with dementia, and relatively little is known about how to use technology to non-pharmacologically improve sleep.
Particularly important for the workshop was tackling the multi-disciplinary nature of the problem. We had carers who presented their views and lived experiences to drive home the challenges that face people on a day to day basis, together with engineers making wearable and similar devices, together with fundamental biologists to help understand the mechanisms in the brain involved. My lab does a large amount of co-design with different user groups and healthcare stakeholders, and getting all of these views into the same room at the same time is difficult to do - there are many barriers in terms of language and expectations - but also really powerful.
Caring for the carers
The outputs and discussions from the workshop were fascinating. For space, I'll focus on one: the real focus on carers.
Many carers are 'children' helping elderly parents. They may have full-time jobs, other commitments, and possibly their own children, but are often ignored by many research discussions in dementia. These tend to focus on things like amyloid plaques, on new imaging methods, on clinical care routines. Where are the technologies to help the carer? There are many possibilities. One solution might be just a detection of whether the person with dementia is asleep or not, which means the carer isn't kept awake listening out for them.
What about a prediction of whether the person with dementia was likely to have a good night's sleep? If accurate, this could massively empower people to take a 'night off' or to plan their own sleep. Personalised, predictive modelling is a significant area of engineering and physical sciences research, but now the user is different and it gives a very different design challenge.
This carer focus emerged across all of the major areas we discussed: the usability and accuracy of wearable devices; and highly novel 'sleep engineering' where non-invasive brain stimulation is used investigate memory consolidation performance, to reduce the time it takes to go to sleep, or to improve wake-up-freshness. Many of the challenges for these are firmly in the engineering and physical sciences space, in the case of sleep engineering in making power and time constrained signal processing to work out when to deliver a stimulation with the minimum possible latency.
To date, our focus has been creating technology to non-pharmacologically improve sleep by working with healthy young and older people, as a lead in to working with people with dementia. The workshop has made me re-think: should we put the carer as our lead user and develop for them first? Many of the same technological approaches could be applied, potentially with a shorter route to impact.
Dementia Action Week 2018 (Twitter: #DAW2018) is taking place between 21-27 May.