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To Post or Not to Post: Ethical Considerations for Family Caregivers

Researchers from the University of Southern California coined the term “carefluencers” to describe a new generation of family caregivers who are using social media to share the day-to-day realities of caring for an older loved one. Social media can be an excellent venue for caregivers to connect, empathize with each other, and share caregiving tips. The Reddit communities of r/Dementia and r/AgingParents offer caregiving family members a venue to vent, share resources, and find other people who are also going through the sometimes-isolating experience of elder caregiving.

However, when caring for someone vulnerable, such as an individual with dementia, the ethical implications of sharing personal stories and images can be complex. This concern mirrors conversations around family vlogging and mommy blogging in recent years: many children featured are now old enough to share their thoughts on the experience – and it’s not always positive.

When it comes to caring for an older relative with cognitive decline, that person may never fully understand the implications of going viral on TikTok or even being on social media. Caregivers should consider several factors when it comes to sharing pictures, videos, or descriptions about their experience.

Understand and respect consent

Sharing content involving another person, especially those with cognitive impairments like dementia, must center around consent. But, informed consent is challenging when an individual may not fully comprehend what it means. Caregivers must carefully consider whether their loved ones are capable of understanding and agreeing to be online. For those with fluctuating levels of awareness, caregivers might try discussing social media during moments of lucidity, ensuring any content shared respects their comfort and privacy.

Choose what and how to share

Instead of directly sharing images or videos that identify their loved ones, caregivers might opt for more indirect methods. Writing about one’s feelings and experiences or sharing anonymous or non-identifiable imagery like hands holding an object, can convey personal stories without compromising privacy. Utilizing private social media groups specifically designed for caregivers can offer a supportive environment without the risks associated with public sharing. Anonymizing details in shared stories or images, such as blurring faces or omitting specific locations, can further protect individuals’ identities.

Uphold dignity and privacy

What’s the intent behind sharing the content? Caregivers should reflect on their motivations—whether they’re seeking advice, celebrating progress, or simply expressing emotions related to their own journey. Make sure not undermine the dignity of the person cared for or shame them for their behavior. Consulting with other family members or professionals can provide additional perspectives on what is appropriate to share. Additionally, caregivers should monitor the reception of their posts and be ready to adjust based on feedback, keeping in mind the long-term availability and impact of the content shared.

Ethical and legal considerations

Caregivers must also be aware of the legal implications of sharing someone else’s personal information and images. Privacy laws may vary, but the principle of protecting an individual’s right to privacy remains important. Content shared should never embarrass or portray the individual in a vulnerable state, such as during medical procedures or moments of personal distress.

Social media, when used thoughtfully, can be a powerful tool for family caregivers to educate others. By adhering to these guidelines, caregivers can navigate the complexities of online sharing with ethical integrity. So, the stories and images shared honor the lives of those being cared for, treating their experiences with the respect and dignity they deserve.

Source: IlluminAge AgeWise

Read More About: Caregiving, Senior Safety

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