Can social media be exploiting you as a person living ...

Key points:

People with dementia still have rights to agency, dignity and respect
Social media has been both positive and negative for the dementia community
Before posting photos online, family or friends should be checking with the person with dementia first before doing so

Work has been done to highlight the exploitations and pitfalls of social media in the aged care setting, but more conversation needs to happen regarding social media content and those living with dementia.

Kate Swaffer, former nurse, author, activist, advocate and person living with dementia, has been actively trying to ensure people with dementia are having their voice heard, especially regarding consent and social media presence.

Societal shifts needed around dementia

Ms Swaffer has been advocating for over a decade now and is one of eight co-founders of Dementia Alliance International, whose membership is now in 49 countries. Integral to the organisation is its mission statement, “Nothing about us, without us”.

She was diagnosed with Dementia in 2008 and has relentlessly strived for better rights and treatment for those living with the disease across the world.

Weighing in on the multiple factors at play when it comes to the treatment of those with dementia and social media, Ms Swaffer highlights the imperative for change and an attitude shift on those living with the disease.

“Agency, dignity and respect is critical, and a basic human right, which has been denied to people with dementia, even in the early stages of the condition,” explains Ms Swaffer.

Ms Swaffer argues that underlying perceptions in our society, even by family carers and loved ones, have a significant effect on the overall treatment and experience of those with dementia.

When it comes to understanding how vulnerable persons, especially those with dementia, can be exploited with footage being taken and uploaded to social media – it is helpful to understand the systems that allow this.

Ms Swaffer says, “We need a system of care, and societal attitudes to change, to ensure that the symptoms of dementia are managed as acquired multiple disabilities not just memory changes, which will support people to live with dementia, rather than the current advice to ‘prepare for the end’.”

Instead of assuming that a loved one with dementia won’t have an opinion on what footage is recorded of them and where it goes, instead, the approach should be flipped and focus on supporting someone to live their best life with dementia.

Ms Swaffer says older people should be provided with the opportunity to have agency and opinion, particularly when it comes to footage of themselves.

It is important to allow space to view and experience social media for what it can positively allow but when it comes to the vulnerable, it is vital that people with dementia are not exploited and are able to provide consent.

“The use of social media has been positive, but also negative, as I have been bullied multiple times, mostly by unpaid care partners,” explains Ms Swaffer.

“The positives, however, include a collective community to engage with including academics, care providers, other advocates and activists, and especially the disability community.”

Previously, media reports have focused on the validly horrifying footage taken in care homes by employees, yet there is also another component that must be examined – footage taken in private homes by family carers and loved ones.

Through the lived experience of dementia and social media, Ms Swaffer powerfully conveys, “I am deeply concerned about the video footage, photographs and very negative narrative pasted all over social media, especially by family care partners.

“As a person diagnosed with dementia, reading most of the content written by ‘family carers’, [for example] wives and husbands, sons and daughters, care partners, especially in Facebook groups, is truly horrifying, and has made me feel much more of a burden to others.”

As technology roars ahead and the possibilities of positive change on a larger scale are now available, a spotlight must be shone on the subconscious biases towards those with cognitive conditions.

When asked about her own experiences and frequency of footage being taken and subsequently uploaded to social media without her consent, she says it has felt like a “total invasion” of her privacy and her rights.

Other people with dementia Ms Swaffer has spoken to have also felt the same – describing concern and feelings of helplessness.

“It happens so often, most of us have given up speaking up against it. If the person with dementia has a legal guardian, who has provided the consent, there is nothing we can do about it,” she explains.

Ms Swaffer says there can sometimes be a power imbalance between family members and the person the footage is taken of.

“I also get a sense that legal guardians feel self-righteous about their power to do what they want, once someone loses capacity and their power has been enacted,” she explains.

When it comes to the steps that should be implemented to ensure the dignity and rights of persons with dementia are honoured, Ms Swaffer encourages those who have been recently diagnosed to put their wishes into their Will, their Advance Care Directive (ACD), and make it known to everyone.

Ms Swaffer says she has told her own family, and put it in her ACD, that once she loses capacity to provide consent, she does not permit for anything to be posted of her, including stories, photos or videos.

Many family members may have never thought about the implications of taking footage of a loved one with dementia and uploading it to social media.

While motivations for sharing content are largely not malicious, it is vital when thinking about honouring and respecting loved ones with cognitive impairments that much care is taken and to err on the side of caution.

When it comes to guidance for family members taking and uploading content of their loved ones with dementia to social media, Ms Swaffer doesn’t mince words, “Stop doing it, unless they have written consent from when the person had capacity [if they no longer have the capacity to consent].”

The law lagging behind

Social media platforms and international and Australian law is still playing catch up when it comes to the regulation and management of content on these platforms.

Ms Swaffer believes that there should be stricter regulations in place to protect people with dementia.

Dr Megan Prictor, a Senior Research Fellow at Health, Law and Emerging Technologies (HeLEX), Melbourne Law School and Centre for Digital Transformation of Health, says that when it comes to footage being taken and where that goes, the law could be different in every context.

“There is law, however, the law is pretty broad-brushed. Applying to individual circumstances is complex and with every instance and scenario, the outcome would turn on the outcome of the scenario,” explains Dr Prictor.

“The law is playing catch-up… [They are] not great for dealing with these scenarios, if the [law] were to be designed better, we would think about creating legislation with all these scenarios in mind, more fit for purpose. These laws are borrowing and not really designed to deal with these situations.”

Dr Prictor added that for people with dementia, there is added complexity if the person still has the capacity to consent or if their ability to consent comes and goes.

Control, identity and content

Many of us hold dear the ability to control and manage how we present ourselves, particularly what we post on social media.

Our sense of dignity and identity through what we showcase to the world can be so connected, and this doesn’t change for someone living with dementia.

Ms Swaffer says, “The only thing I fear or am terrified of, is not dementia, but the reactions and behaviours of people without dementia.”

“Dementia does not have to be the most feared disease, if we can change the way we support people to live with it, and if people without dementia can change their attitudes towards people who are diagnosed with it.”

While there is no absolute advice when it comes to navigating what should and shouldn’t be posted online of those with dementia, it is important to draw back to the basics – listen to your loved one before taking action.

Many studies have shown support and encouragement can elicit significant benefits to those living with diseases.

By centring the decisions about what is posted online squarely on the person with dementia is to start from a place of respect, agency and dignity.

Do you still want to be active on social media even if you develop dementia? Tell us in the comments below.