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Public Editor Sensitivity and respect were primary concerns while producing The Globe’s dementia series

In covering deeply personal issues, journalism is quite different from the often one-dimensional world of social media. It uncovers how the vulnerable are treated, the problems they face and what could be done to help them. Those articles depend absolutely on people willing to openly discuss their job losses, health setbacks, depression or the loss of a loved one.

That can make a reader part of that community in shared grief or concern, and it brings real problems to light for readers and politicians. You have seen the impact from the coverage of Unfounded sexual assaults and those affected by mental illness, to name just two cases.

In this coverage, it’s the responsibility of journalists to be sensitive to those sharing their private lives. As our Editorial Code of Conduct says, “in dealing with people who are emotionally vulnerable and unaccustomed to talking to reporters, The Globe and Mail will take care to respect their dignity and feelings.”

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A thoughtful e-mail from one reader raised concerns about whether people with dementia were being treated fairly when they couldn’t all give permission to have personal private details reported in recent articles.

The series was called Grey Area: The fragile frontier of dementia, intimacy and sexual consent, and it explored how seniors who couldn’t recognize their own kids tried to navigate the physical intimacy with one another. Reporter Zosia Bielski looked at how these challenges arose for the elderly, as well as their families and nursing homes.

The reader, John Williams, former Director of Ethics for the World Medical Association, said the article revealed “intimate personal information about individuals with dementia who are both named and photographed. Since much of the article discusses whether such individuals are capable of consent, it seems certain that they did not give free and informed consent to have their personal information revealed in a national newspaper. Presumably the family members mentioned did give consent for their own stories to be published, but they have no right to agree on behalf of others, even close relations.”

In every case, The Globe received full consent from either those in the early stages of dementia who could give their own consent or from those who had power of attorney – family members who had the legal authority to represent their ailing relatives. In addition, for the sake of the residents, the scant private details were limited to families’ descriptions and personal reactions to what they saw.

A gerontological nurse’s account of dementia patients was sourced from anonymous composite cases, and presented at an academic conference. One couple with dementia was described singing, hugging and napping together: a brief description of an innocuous, consensual relationship observed by many family members and staff.

The reporter worked with a team of editors and noted that “from the very beginning, we grappled with (and discussed repeatedly with the families and dementia advocates …) consent concerns in telling these people’s stories. It wasn’t lost on me that these concerns mirrored the very ones raised in this story about sexual consent. That was with me every day reporting and writing the piece."

Ultimately, she said, the team decided that it was important to tell these stories in a discreet, considerate and non-prurient way, in order to raise awareness around these serious issues for Canadian readers. She noted that many of the voices in the piece came through the Alzheimer Society of Canada, a staunch advocate for this cohort. “I’ve received nothing but thanks from families in similar situations and Alzheimer’s experts across Canada, but of course I can understand the concern the reader raises,” she added.

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In the main article, there were no interviews with advanced dementia sufferers, but they were photographed with permission from their children, spouses, powers of attorney and executives at a nursing home. The children’s permission and their intentions for going public are explicitly described in the story.

A follow-up article included the voice of a man with dementia who spoke on his own behalf, who also serves as an advocate for stigma around the disease. He was referred to the reporter by the Alzheimer Society of Canada and has done other interviews with the media.

One person with severe dementia was identified by her first name only. She is deceased and her husband, a licensed psychiatrist, discussed their marriage and his experiences. He has also published a book on the matter to help others.

Mr. Williams took his complaint to the National Newsmedia Council of which The Globe is a member. Council representative Pat Perkel said journalism’s role is to “talk about emerging issues and society’s response, even if that means broaching sensitive matters. Effective journalism conveys abstract ideas by personalizing – using real people who will bring the story home for readers. This article is a strong example of that widely accepted journalism practice."

In my view, the articles were an important public service handled with great sensitivity. It is worth noting that apart from this one complaint, the reporter received thanks from Alzheimer’s advocates, a gerontological nurse, nursing graduate students, a bioethicist, as well as families facing these circumstances, for her sensitive treatment and the impact it had.

I know of no legal impediment to such coverage and, from an ethical perspective, I think this article was written at the highest standard, mirroring the sensitivity shown in dealing with victims of sexual assault or those grieving family members. Sometimes, journalists need to let people tell their own stories.

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If you have thoughts, please e-mail me at publiceditor@globeandmail.com

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