Internet of Things being used in innovative dementia research
This article has been reproduced from the NIHR website.
The Government’s Challenge on Dementia looks forward to England being a world recognised dementia research centre by 2020. More than 850,000 people in the UK have a diagnosis of dementia. In Surrey, around 16,800 people are estimated to have the condition with this figure set to rise to around 19,000 by 2020.
Dr Ramin Nilforooshan is a Consultant Psychiatrist for Older Adults and the Associate Medical Director for Research and Development for Surrey and Borders Partnership NHS Foundation Trust. He is also the dementia research co-lead for NIHR CRN Kent, Surrey and Sussex and firmly believes patients must be informed about life-changing research that is taking place in their vicinity or locally.
Dr Nilforooshan says: “Every patient should be given the right to participate in research if they would like a new treatment. Within Mental Health people feel defeated as treatments for Alzheimer’s disease only work to hold off the disease for a short time. Few clinicians talk about alternatives.”
Surrey and Borders Partnership NHS Foundation Trust is supportive of research and considers it a part of standard care. Participation is open to everyone and clinicians do not make the decision to include or exclude anyone.
“It is important that every clinician helps promote research opportunities to patients, even if they do not conduct the research themselves. Clinicians need to put themselves in their patient’s shoes. Once a diagnosis is given, instead of clinicians telling their patient’s there is no effective treatments for dementia, they could tell them that there are clinical trials which help. People may do anything to keep their memory, we are talking about quality of life and to be given a window of opportunity for a while and not just be offered ‘bog-standard’ care.”
Dr Nilforooshan began his research career when he was a Registrar at Sussex where he was given an opportunity to work on a dementia clinical trial by Professor Naji Tabet.
As well as his post at SABP and the CRN, Dr Nilforooshan is an Honorary Senior Clinical Lecturer at University of Surrey. Ramin established the Clinical Trials Unit in Surrey in 2013 and it has gone from strength to strength. It is now one of the leading sites for commercial trials and illustrates Pharma’s willingness to invest in new, as well as established sites.
Dr Nilforooshan is Chief Investigator for TIHM for dementia (Technology Integrated Health Management) study. TIHM for dementia is one of only seven NHS Innovation Test Beds, and is one of two specifically looking at creating an Internet of Things – the idea of connecting any device to the internet and/to each other via the internet. The study has recently won the Best Mental Health Initiative Award at ehi LIVE, which is an event for digital health, hospital information, cyber security and healthcare innovation.
The study uses digital devices installed in the home which allows clinicians to remotely monitor a person’s health 24 hours a day and in real time. If a health or safety problem is identified, clinicians step in to offer support.
Calling the person’s carer to alert them to a potential problem or, arranging for an Alzheimer’s Society Dementia Navigator to visit soon, is an example. If the technology identifies a crisis, the emergency services will be contacted.
Most of the devices operate in the background, collecting information. One example is the use of sensors which can measure a person’s movements round the home and identify if they have had a fall. Some devices, such as a GPS tracker, can be worn and will alert clinicians if a person has wandered too far from home. Others, such as weight and hydration scales and a blood pressure cuff, require a person to interact with the device. The devices are not difficult to use and both the person with dementia and the carer are shown how to use them.
TIHM for dementia is designed to work alongside the existing care a person receives and will not replace that support.
Dr Nilforooshan says: “In the current system, a person with dementia is referred by their GP to a clinic and then gets an assessment and medication, but there isn’t much of a follow up. People with dementia are usually stable for a time, but they might end up in hospital in crisis at some point, which is stressful for them and their family. Our aim is predict crises, rather than waiting for these crises to happen, and therefore step in early to offer support.”
The Trust is recruiting 1,400 participants from across Surrey and North East Hampshire to take part in the study. To qualify a person must have mild or moderate dementia, live at home, and have a carer, who can be a partner, relative, friend or paid carer, who is willing to get involved. The study is conducted in partnership with the Alzheimer’s Society, and is being funded by the Department of Health, NHS England and Innovate UK.
Dr Nilforooshan says: “The live data we are collecting about people’s health in this study will help us to better monitor the progression of the illness in an individual so that we understand exactly what their needs are as the illness changes. Sometimes we can only assume a person’s needs and the support they need.”
“I have passion for what I do. My most rewarding work is working with dementia patients and I look forward to advancements. I look forward in 10 years-time, when I can see the new advances in dementia care which are in place due to results we are hoping to have from current trials.”