Stigma's Troubling Impact on Family Caregivers
There is often a negative connotation that comes with the word “dementia.” As a result, people living with dementia and their caregivers are faced with the reality of being isolated from their community. Because of people’s fears and assumptions concerning the disease, patients and their family caregivers lose their sense of belonging and connection with those around them. Dementia Friends is an organization that shatters the stigma of the condition by showing everyone that there is nothing to fear.
Team Leader for Video
Reducing the Stigma for People Living With Dementia
“I was surprised, because…I didn't see the symptoms,” Jennifer Hardy-Williams, a family caregiver for her mother living with dementia, said.
Hardy-Williams has been a caregiver for her mother, Estelle Hardy, for almost two years now. When Hardy-Williams first heard about her mother’s diagnosis, she was surprised to hear that her mother is now a person living with dementia.
“I was actually surprised. But then, as time went on, I did start to see different things, how she would forget things, how she didn't remember things, how she couldn't do things,” Hardy-Williams said. “So it did come on very rapidly. Because you know, she had a fall, which brought it on more rapidly than I guess it was coming.”
As surprised as Hardy-Williams was about her mother’s diagnosis of dementia, she was just as surprised about the stigma facing people living with dementia and their caregivers.
According to the Alzheimer’s Association, many people living with dementia and their caregivers have reported that they are often misunderstood due to the stigma, stereotypes and myths surrounding dementia in all its forms. The lack of public knowledge and understanding of how Alzheimer’s and other dementias function can have various effects on people living with dementia. Stigma can prevent people from receiving medical treatments, seeking an early diagnosis or any diagnosis, pursuing available treatments, finding a support system, or signing up for clinical trials. The stigma can impact the patient and caregivers’s ability to live a good quality of life and plan for the future.
The stigma surrounding the disease affects people personally, but also, medically and financially as well. It has played a key role in inhibiting the federal government’s spending on research into Alzheimer’s and other dementias. Case in point: the government spent $7,035,000 on cancer research in 2020 versus $2,869,000 on dementia-related research in 2020 even though the cost for caring for a person living with dementia is significantly more expensive.
According to the Alzheimer’s Association, these stigmas about Alzheimer’s and other dementias present an obstacle for people living with the condition in many ways. It can change their relationships with family and friends whose reactions to the diagnosis could make the person living with dementia (PLWD) feel insecure and uncomfortable seeking treatment. Due to the stigma surrounding dementia, people may discuss the PLWD with their family caregiver instead of addressing that person directly.
Kate Swaffer, who wrote an article about the stigma of dementia at the University of Wollongong in Australia, states that there are 7.7 million new dementia cases each year. This has led some political leaders and governments to make healthcare for PLWD a priority since the disease is rapidly growing on a global scale. However, according to the Alzheimer’s Association, the stigma surrounding people living with dementia impacts government-funded research for the disease, especially since the research for dementia already receives very low funding despite the fact that the cost for caring for someone with dementia is very expensive.
Many website resources suggest that people break down the stigma of dementia by being open and direct and communicating the facts about the disease. However, Swaffer’s article goes into more detail about how it takes more than just communicating facts and having open discussions to break down the stigma. She suggests that it is about being more cautious about the language that is being used about people living with dementia and their caregivers. It also includes being a critical consumer of the news and entertainment media’s portrayal of people living with dementia in literature, film, TV and news.
“Language is a powerful tool,” Swaffer writes in her article. “Our words do reflect our thoughts and feelings, and can show respect or disrespect. The words we use not only strongly influence how others treat or view people with dementia, perhaps more importantly they can impact how they view themselves and how they relate to others, which can negatively impact their ability to be empowered.”
In 2014, during the Alzheimer’s Disease International conference, researchers presented evidence that showed that much of the public used offensive and demeaning terms and phrases when referring to people living with dementia, such as demented, sufferers, subjects, victims and “not all there.” According to Swaffer’s research, various Alzheimer’s societies around the world have created language guidelines concerning those living with dementia. However, her article continues to say that many researchers, service providers and the media have yet to comply with these guidelines, though they were created a few years ago.
Tim Furlong, a general assignment reporter for NBC 10 in Philadelphia, said that he believes his network and the media generally strive to not stereotype anyone or any community when it comes to sharing their stories on the news.
“I think on a good day, we try to make sure everybody's voice is heard,” Furlong said. “I hope, really, that we're giving voice to the voiceless sometimes and are giving voice to people whose voices aren't always heard the best. Do we do it perfectly every day? I don't think so. And I think sometimes, it's a work in progress. I can assure you, where I work, we talk about these things. We do think about these things in terms of ‘how can we be better?’ and ‘were we as good as we could be today?’ And sometimes the answer is yes and sometimes the answer is no. And if the answer's no, it's like, ‘okay well, tomorrow's coming quickly, what can we do to be better tomorrow?’ So it is an ongoing discussion. We talk about different conditions, different people in the news like [how] we talked about mental health concerns. We talk about all that because, again, we want to be stewards of the community.”
Furlong has been a news reporter for 26 years with 16 of those years being a reporter for NBC 10. He goes on to say, “It's more about how I would approach it if I were going to cover it today, and the answer to that is talk with experts, talk with the people that are dealing with this.”
Furlong tries to convey his stories in ways that allow people to be able to sympathize with others. His goal when reporting on news stories is not to tell how or what to think but bring a better understanding about different situations to people who are not aware of them.
“For me, it's being sympathetic and empathetic,” Furlong said. “Walking in somebody else's shoes…So in my storytelling, I want people at home to have that moment where they're like, ‘wow, I see what that person is going through. And that's tough. That's torture.’ And, again, I don't want to tell people how to think about things. But I want people to understand there are a lot of people out there dealing with a lot of things, and dementia in a family member is one of them.”
Aside from language and media, dementia-friendly communities are also an important way to break down the stigma surrounding dementia. According to Swaffer’s article, the goal of dementia-friendly communities is to have people engage with those living with the condition on a daily basis and destigmatize the people living with dementia.
An organization that has already taken the steps to create dementia-friendly communities is Dementia Friends. This organization is a global movement that strives to change the way people interact with those living with dementia by training people on how to engage with people in their community who are living with the disease. Dementia Friends was developed by the Alzheimer’s Society in the United Kingdom and has chapters in several states in the United States, including Pennsylvania. Currently, there are 8,004 Dementia Friends in Pennsylvania.
Though Dementia Friends is working on eliminating stigma about dementia and building dementia-friendly communities, becoming a Dementia Friend is a completely voluntary act, which means it could take some time to build dementia-friendly communities and destigmatize the disease. However, studies have shown that Dementia Friends have helped to destigmatize the disease and helped create a sense of community for those living with dementia.
Even though the stigma surrounding dementia and people living with it may take a while to eliminate, especially in language and media, it is important to have some support present no matter how little it may seem. Whether it is through an organization like Dementia Friends or through conducting research about the disease, the support given to people living with dementia and their caregivers can help them feel less isolated and know that they are not alone in all of this.
“I think you need support,” Hardy-Willaims said. “I think what's good that I don't take advantage of is maybe a support group, because you need people who're experiencing the same thing so you can talk to, because then it doesn't feel like you're alone.”
Team Leader for Text
Team Leader for Infographic
Educating People on the Stigma Surrounding Dementia
Caregiving can be socially isolating due to the stigma surrounding dementia. Dementia Friends works to shatter that stigma by educating members of the community on the condition and ways to support people living with dementia.
Team Leader for Audio