Daniel Berman from Nesta Challenges and Colin Capper at the Alzheimer’s Society focus here on dementia tech, including comment on overcoming barriers to innovation post-pandemic
Isolated from family, deprived of routine and worst hit by the COVID-19 virus, people living with dementia and their loved ones – have seen their lives devastated by the coronavirus pandemic.
Between March and June 2020, over a quarter of people (27.5%) who died with COVID-19 had dementia. (1) Additionally, the largest increase in excess non-COVID-19 deaths were in people with dementia, with 5,404 more deaths of people with dementia than usual during March and April 2020 (compared to the five-year average). (2)
Sadly, the disastrous effects of the pandemic on people living with the condition do not stop there. Social isolation caused by lockdown and health or social care service interruptions have also had a negative impact on people’s health. In an Alzheimer’s Society survey, 83% of family carers said they had seen a deterioration in their loved one’s dementia symptoms. (3) In a separate survey by the charity, 46% of people living with dementia reported that lockdown had negatively affected their mental health. (4)
Dementia in the UK during a pandemic
There are currently around 850,000 people living with dementia in the UK, and yet essential care and health support are becoming increasingly inaccessible due to the pandemic. (5) Despite the multitude of people already failed by our broken social care system, some existing social care and health services have been put on hold, creating an even worse backlog of people who have missed out on essential help.
Family and friends have found themselves plugging the gaps: since lockdown began in March 2020, it is estimated they have spent around 92 million extra hours caring for loved ones with dementia. (6) It should come as no surprise that 95% of carers that Alzheimer’s Society spoke to find the extra hours caring had negatively impacted their physical or mental health. (7)
What has become obvious is not only the need to ensure people living with dementia are protected in the event of a second wave, but that they can receive the right level of care consistently. This must be achieved through long-term reform and increased funding for dementia research, but technology can also help play a part.
The need for breakthroughs in assistive technology
New breakthroughs in assistive technology are crucial to help people with dementia and their families recover from the effects of lockdown where they can.
Until now, dementia has lagged behind in the use of technology compared to other long-term health conditions such as diabetes. Why? The science and technology exists, but assistive technologies are not always accessible and fit for purpose. In many cases, they are simply not designed in collaboration with people living with dementia and often do not function to satisfy their most urgent needs. At present, ‘Dementia Tech’ is overlooked, as are the lives it could transform. This isn’t right.
The challenge is to create tools that are accessible to everyone with dementia – these should either be affordable to the people who need them or to the social care systems that might provide them.
If new tools are developed to support people with dementia to maintain their independence, this could relieve some of the pressure on carers. There are several devices — including location detectors and wearables — designed to help people stay safe, remain independent, detect any changes in their condition, or help them to manage it and live as full a life as possible. Take ‘Refresh’ for example, an app supported by Alzheimer’s Society’s Accelerator Programme. It works by flashing up personalised, how-to videos when a smartphone scans an object in the home to help people with dementia carry out everyday tasks like preparing meals and using appliances. (8)
Refresh highlights the possibilities that await provided we encourage a focused effort in adapting technology to the needs of people living with dementia. If new interfaces can be tailored to the needs of people with this condition, AI and natural language tools would provide useful assistance to compensate for cognitive limitations.
One such innovation might be a speech assistant that helps someone with dementia better express themselves, thereby facilitating communication with family, friends and carers.
A collective effort is needed to overcome existing obstacles to innovation in this space. From a technology developer or innovator’s perspective, the complex and progressive nature of dementia, which, for example, might result in behavioural changes, creates unique challenges. As a result, the innovators will need expert support to overcome technical barriers.
Revolutionary solutions for dementia
Alzheimer’s Society and Nesta Challenges are exploring how to engage a broad, diverse community of innovators to encourage revolutionary solutions that will completely transform what it means to live with dementia.
Assistive technologies have already transformed peoples’ lives. For example, people who have lost the ability to speak for themselves because of nerve damage can now communicate with AI tools that reproduce their own voice and speech patterns. It is time to bring the technological revolution to the aid of people with dementia so that they too can continue to live independent, fulfilling lives for as long as possible.
To realise this vision, there is a need to facilitate genuine collaborations and partnerships, between a broad range of academic disciplines and specialisms, to co-design the technology and apply user-centric design principles.
Today, we have a major opportunity to harness the potential of technology to enable people with dementia to remain independent for longer, while taking pressure off carers and the social care system. While technology cannot replace human contact and care, it can both enable it and complement it. By nurturing a pipeline of new technology that benefits people living with the condition, we hope that they will be able to live independently for longer, now and in the future.
To find out more about how tech can support people living with dementia, get in touch with us at dementiaprize@nesta.org.uk
References
(2) Analysis of death registrations not involving coronavirus (COVID-19), England and Wales: 28 December 2019 to 1 May 2020 (ONS, 05.06.20).
(3) Alzheimer’s Society survey of people affected by dementia (2020).
(4) https://www.alzheimers.org.uk/about-us/policy-and-influencing/dementia-scale-impact-numbers
(5) https://www.alzheimers.org.uk/about-us/policy-and-influencing/dementia-scale-impact-numbers
(6) https://www.alzheimers.org.uk/lockdowncarerhours
(7) Alzheimer’s Society survey of informal carers (29.09.20).
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