People and relationships must be at the heart of digital

Written by: Tommy Whitelaw, Dementia Carer Voices Project Lead, the ALLIANCE

Published: 14/10/2019

Tommy shares why discovering digital must be about discovering people and their needs.

Loneliness and isolation can have a massive impact on our wellbeing and confidence. I was a full-time carer for my mother, Joan who was living with vascular dementia in a home I used to know and a city that used to be home after numerous years living abroad.

After my mum Joan’s diagnosis, it was really difficult to get out of my house. Not physically personally but the barrier to actually putting my hand on the handle pressing it down and stepping outside often felt too much for me. My mum needed care and over the last years, this increased over the days and nights. I had limited time – a mere 12 hours a week when volunteers would support my mum so I could get the shopping and other tasks done. And that was how we lived, until I started sharing how my mum and I were feeling online.

As a result of blogging on an online digital platform, I was able to seek out opportunities for social connectedness, personal growth, continued life purpose, and overall a higher quality of life as a carer.

Loneliness is common and it is uncomfortable. We don’t like to really think about it. And yet we can all think of a time that we were lonely. In a recent BBC survey, 1 in 5 Brits revealed they’re lonely. And it’s not just older people. A recent survey by Carers UK found that unpaid carers are seven times more likely to be lonely than people who are not responsible for looking after a loved one living with an illness, disability, mental health condition, or as they grow older. This paints a bleak picture of what caring for a loved one involves for the country’s estimated 747,000 unpaid carers. Findings from the Dementia Carer Voices ‘Make a Difference’ campaign confirms that unpaid carers in Scotland often spend weeks isolated indoors without speaking to anyone other than those they care for.

While we are facing a loneliness epidemic, there are solutions. And while there are charities and no shortage of clubs and societies that provide support and ways to meet people, digital communities created on existing digital platforms evidently have the potential to improve one’s mental and emotional health. ‘Digital’ forums and online blogging changed most aspects of my life as a carer, not only in helping me access greater information about carer rights, my mother’s health but also in managing my own health as I both created and participated in a self-supporting digital community.

Loneliness, particularly as a carer, requires action across the board and digital communities have an important role to play, as do digital health apps. In the Dementia Carer Voices team, we believe people must be at the centre of all digital innovation for the health and well-being agenda. We can build self-management apps. We can create new digital solutions. And we can use data more wisely. But we must challenge one another to ensure that while we discover the potential of ‘digital’ in health, we also commit to discovering ‘people’ and their individual needs.

Digital Discover 

The 2019 edition of Digital Discover launched on 11 October, explores how digital – apps, smart phones, computers and various other technologies can be used to manage our health better. The series of events have been supported by the Dementia Carer Voices team with the belief that technological innovation can indeed enhance health and wellbeing and increase autonomy.

The Discover Digital programme of exploratory events is suitable for people of all ages, backgrounds and abilities. There are a selection of stalls, talks, activities at each of the four showcase events. You can sign up for the Dundee or Inverness events on Eventbrite (this link will take you away from our website) to hear my talk and to learn more about how digital can enhance our health and wellbeing.

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