In an essay published by Inside Ageing, Bobby Redman, a retired behavioral psychologist living with FTD, discusses the results of a survey by Dementia Australia.

According to the survey, nearly one-third of Australians found persons living with dementia to be frightening. The figure increased from 23% over the last decade. Redman writes that, as a person living with FTD, she found it “very confronting” to see the results of the survey.

“At some level, I understand this fear and avoidance of dementia,” Redman writes. “Possibly, it is based on what people see in popular culture, which tends to skew towards the dramatic and shocking rather than the reality. If people are basing their views on dementia on a stereotype of somebody who is violent or aggressive, they’re seeing an extreme.”

Redman notes that she doesn’t believe that a fear of dementia comes from a place of malice but rather from a lack of understanding of the different dementias.

“If you know someone with dementia, you’ll realize that we’re just regular people with an illness, and sometimes that may impact the way we behave or think,” Redman said. “I have met a lot of people who live with dementia through my advocacy work raising awareness about discrimination, yet I’ve never met anybody who really scares me.”

However, as Redman highlights, persons with dementia are often fearful of going out into their communities. In addition to the stigma they face due to the general lack of dementia knowledge, typical venues such as supermarkets can present obstacles to people with dementia. The loud noises, visual clutter, bright overhead lighting, and proximity to so many other people can create a confusing and overwhelming environment.

Redman said it can make a “world of difference to our experience” when people stop to provide a little support, especially because many people with dementia still live at home within the same community.

“We are your neighbors, your customers, the person you walk past in the street,” Redman says. “So, what’s the answer to breaking through the fear? What we need from you is not to be feared but a greater understanding of the challenges we face, which will go a long way to creating more caring communities that would benefit a lot of people, not just those of us living with dementia.”

Redman says that a new approach could involve people within communities trying to look after one another, being careful not to assume that everyone can operate at the same level as them. Signage in public places can be confusing for Redman; she says that she appreciates those who offer assistance when she becomes stressed.

As Redman highlights, community amenities and businesses could also take steps to make public spaces more accessible to persons with dementia, or anyone who otherwise might benefit from extra support. Redman notes that libraries in her area provide basic support training to staff to help them better support persons diagnosed.

“Many [local libraries] now have a dementia-specific area, with a quiet, comfortable space overseen by staff ready to step up and offer assistance as needed,” Redman writes. “Quiet hours in major supermarkets and some shopping centers are now quite common, and I have often heard staff say that it is their favorite time as lights are dimmed slightly and loud pumping music is switched for more relaxing sounds. Simple actions like these don’t just make things easier for people like me who are living with dementia; they create a kinder, more considerate society that benefits everyone.”

Redman, an Australian advocate living with FTD, previously shared in an interview with the Sydney Morning Herald how she uses smart home appliances and other technologies to help her manage her symptoms.

FTD has different subtypes with symptoms that can present varying challenges for persons diagnosed living in your community. Visit the Disease Overview page to learn more.