Plain English Summary

Smell disorders have long been neglected, despite known links to Parkinson’s, dementia and to shorter life expectancy. Recent public and patient engagement work by the charity Fifth Sense (FS) has shown a failure to provide a good service for such patients in the UK. It also showed the need for better treatment and support.

This lack of support has been made worse in the COVID-pandemic, leaving patients and doctors struggling to advise those affected by smell disorders. This adds to the mental health problems that are linked to the loss of smell. To date, based on UK infection rates, nearly 500,000 people have lasting symptoms of smell loss or change (>4 weeks). These may be linked to other Long-COVID symptoms such as fatigue, memory problems and brain fog.

Smell training, a type of smell care, now has several studies showing it can help recover smell function. This is very true in older people, where people suffer a natural decline of the sense of smell. However, current smell training methods are limited to pens soaked in smells or jars of essential oils. A digital solution can overcome these drawbacks and enable digital smell training. This may be delivered in multiple settings including medical, care homes and private homes. The latter sits at the heart of this project’s ambition, namely, to enable smell self-care (I-smell) at home.

A key question this project will try to answer is how and why people will take on and accept I-smell, and keep using it in regular, daily exercises? We all know that it is hard work to set up a routine and keeping it, is even harder. Whilst more people are aware of the importance of smell care in the wider public due to the pandemic, it is easily forgotten and lost when the sense of smell works or seems to work ‘well’ again.

We will study how I-smell is taken into daily routines and any barriers to that. This will be measured by looking at the impact on people’s quality of life and wellbeing. We will gain first-hand early-stage user feedback from chosen households that will take part in a 6-month feasibility study using a novel digital technology in their homes. We aim to establish a clear understanding of peoples’ underlying reasons, opinions and motivations to engage with I-smell over time.

This feasibility study will inform the design of future health and care technology solutions, as well as informing the design of future clinical and population trials. It will also allow us to explore designs for tomorrow’s home that go beyond the current focus on control of environmental conditions such as energy, lighting, temperature and humidity. We will consider how this type of technology will work with existing smart home devices such as Google Home or Alexa.

Our long-term vision is to add self-monitoring records for our sense of smell (akin to hearing and sight tests) into electronic health records (EHR). This would provide a great opportunity to make treatments personal for individuals and allow timely actions by GPs. For example, data could be analysed by artificial intelligence that could lead to earlier diagnosis of diseases like Parkinson’s by a decade. Introducing digital solutions for smell self-care can help maintain and extend independent living at home and improve the quality of life.

Aims

We will study how I-smell is taken into daily routines and any barriers to that. This will be measured by looking at the impact on people’s quality of life and wellbeing. We will gain first-hand early-stage user feedback from chosen households that will take part in a 6-month feasibility study using a novel digital technology in their homes. We aim to establish a clear understanding of peoples’ underlying reasons, opinions and motivations to engage with I-smell over time.