“This area is really important for the younger generation but it’s not so so important for patients and communities we support”
Age discrimination within digital assets and digital legacy planning…
Inequities, inequalities and discrimination within end of life care has been highlighted in various reports over the last few years. Variables include the person’s geographical location, condition type, gender and sexual orientation. Whilst providing digital assets and digital legacy training courses it has become apparent that ageist thinking also occurs when it comes to supporting people, patients and communities with their digital lives. Age discrimination might in some circumstances hinder or prevent older members of society from receiving relevant information and support with their digital lives.
Age Without Limits Action Day 2024 is taking place on the 24th March. This article has been created in support of this year’s action day and for the first time explores age discrimination within the field of digital assets and digital legacy.
What are digital assets?
“Digital assets can be of a monitory (financial) and sentimental value. Digital photos, cryptocurrencies and digital music files are three examples. Personal photos uploaded to a social network may have no monetary value but be of a high sentimental value. Cryptocurrency (Bitcoin etc) often only have a monetary value. A digital music library (purchased as MP3s, WAVs etc) may be both of sentimental and monetary value to the owner and the person or persons who inherits the library.“
What is a digital legacy?
“A digital legacy is the digital and online information that is available about someone following their death. Someone’s digital legacy is often shaped and informed by interactions the person made and information that they created before they died. This might include their social media profiles, online conversations, personal photos, videos and their own websites or blogs. Their digital legacy is influenced and can be co-curated by others before and after the person dies”.
Supporting hospice patients, families and communities with their digital assets and digital legacy
A statement that I am often told when running digital assets and digital legacy training courses is “this area is really important for the younger generation but it’s not so so important for patients and communities we support”. Such comments are often made when speaking at health and social care conferences and whilst running workshops for professionals who support older members of society.
After hearing such statements on multiple occasions I now overtly address this way of thinking with a slide that states “we must not discriminate against people in this area because of their age” in all of my training and workshop sessions. It is important that we ensure that everyone is made aware of this increasingly important area and supported no matter their age. For some people simply passing on a password might be the only planning that is required. Passing on a mobile phone password might for example, enable access to photos taken on the device and help ensure that the person’s contact list can be used when arranging their funeral. For other members of society a ‘Digital and Social Media Will’ can help outline what plans they have made for their online accounts and the digital assets they contain.
We live in an increasingly digitally engaged and empowered ageing society
97.8% of people in the UK use the internet (Kepios, February 2024) and 71% of people over the age of 65 in the UK have a smartphone (Statista). 34% of people between the age of 65-25 and 13% of people over the age of 75 now use WhatsApp (Statista 2024).
Social networks such as Facebook are increasingly important communication platforms and often store precious photos and videos. 10.7% of people in the UK over the age of 65 use Facebook (Statista 2024). The mass adoption of online platforms, new consumer technologies, wearable technologies and uses for artificial intelligence will continue to increase across all ages as the digital space continues to evolve, adapt and mature.
Making plans for our digital assets and digital legacy
When someone dies it is often difficult to locate, access and obtain the digital assets held across the person’s various devices and in different online accounts. It is important for many of us to make plans for these accounts and the digital assets they contain in advance. A range of free to access tutorials can be used to help people navigate through this area on in the Digital Legacy Association’s for the public tutorial section. A Social Media Will can then be completed using a free Social Media Will Template (Excel download).
Alternatively, MyWishes free to use ‘Digital & Social Media Will’ can be used to document wishes both in the online and offline world. Once plans have been made relevant documents are generated (as a PDF) and then emailed or downloaded ahead of sharing. Each document is automatically time and date stamped, The Digital and Social Media Will can be signed and is easily updated when circumstances change.
Printed and/or emailed versions might be provided to one or more trusted people. A copy of someone’s Digital and Social Media Will might be stored in a secure place alongside the person’s Advance Care Plan and their Last Will & Testament.
Professionals supporting communities with their digital lives
Professionals who support communities must be aware of the importance society places on their digital lives. When digital assets of a sentimental or monetary value are not accessible, friends and family members might experience financial loss and/or ‘secondary loss’. Trying to find and access online accounts to locate and transfer digital assets can be time consuming, confusing and exacerbate feelings of grief and loss.
In order to better support society, the Digital Legacy Association recommends that each professional starts by making plans for their own digital assets and safeguards their own digital legacy. This will allow them to learn whilst doing something altruistic and positive for their own friends and family members. This will also enable them to reference their own experiences when supporting patients, families and communities with this area. The digital assets and digital legacy conversation framework is a conversation toolkit and can be used for further support. Hospices, charities and professionals are welcome to print and use any of the public facing resources provided on the Digital Legacy Association’s free leaflets and posters area. Leaflets are available in different languages and as a ‘giant font’ version.
About the author
For the last 13+ years James has helped the general public, healthcare and social professionals understand the importance of making plans for their digital lives. He does so by developing technologies (such as MyWishes that won ‘the best digital legacy platform’ at the SME Awards 2024). James’ work with Harlington Hospice includes the development of a digital ‘wellbeing hub’ for residents in Hillingdon. This was shortlisted for the Royal Society of Medicine’s annual ‘Palliative Care and Mental Health Prize’ 2024. Work at Harlington Hospice also includes defining and co-creating the first ‘person centred virtual reality’ approach and methodology within a care setting. The ‘person centred VR’ work was recognised at the European Association of Palliative Care Conference 2021 and a finalist in the best poster category.
As part of the Digital Legacy Association James develops and delivers digital legacy and digital assets training courses, produces free to access resources and devises areas of best practice for governments, charities and other organisations supporting society within relevant fields.
This article has been written ahead Age Without Limits Action Day 2024. The Action Day is taking place on the 20th March and a chance for everyone to do something to change the way we all think and act about age and ageing. It’s an annual day for individuals and communities, workplaces, friends and families to learn, take action and change the way we think about ageing. It was written for and first published in eHospice
