Published on: January 2, 2018
by Women’s Brain Health Initiative:
The diagnosis of Alzheimer’s disease (AD) comes equipped with an inherent social stigma that has the power to dehumanize even the most vivacious person. Research has demonstrated that, when it comes to medical concerns, the fear of developing AD (and other forms of dementia) exceeds the fear of every other type of health condition.
Dementia currently represents one of the greatest challenges to our economic, health, and social care landscape. To date, there is no known cure for AD and attempts to impede its progress have had little effect. Once a person starts demonstrating signs of AD (such as memory loss and problems with learning, judgment, and communication), there are no treatments that can stop or reverse these symptoms.
Why is there shame and embarrassment around this disease?
The impact that dementia has on a person is not limited to the practical effects of the condition. An individual recently diagnosed with dementia is likely to experience a complex range of emotions, which may include grief, loss, anger, shock, fear, disbelief, and even relief. Some people may struggle to deal with these emotions and they may oscillate between emotions as they adjust. They may feel afraid about the future, scared about moments of confusion and forgetfulness, and upset about the impact that dementia has on those around them. Some individuals report feelings of humiliation, rejection, and distress, and the perception that they have let down those they love by developing dementia. There are many factors that contribute to this sense of shame:
As the International Longevity Centre – UK (ILC-UL) reports, we know that in many societies there are strong associations with aging and stigma, and for those with dementia, it seems that many are subject to a “double jeopardy.” While this stigma, to a degree, is acknowledged and recognized in some communities, we still have much to understand about why dementia remains outside the realm of acceptable everyday conversation, even as the profile of dementia rises.
How do we counter these issues?
There is no shame or blame in Alzheimer’s disease. Dementia is not your fault. It does not erase who you are or all of the things that you have accomplished over the years – your parenting, your teaching, your career, your youth, your faith, your identity. Dementia is not you and that is a truth that should not be hidden.
Dr. Pamela Rutledge, a prominent media psychologist and director of the Media Psychology Research Center in California, says that in terms of influencing public opinion and altering stigmas, allowing individuals to discuss their own experiences is the most potent form of storytelling. As Dr. Rutledge explains, “[p]eople telling their own stories will be 100 times more powerful than telling their stories for them.” She points out that a person’s views about a topic are most likely to change if he or she is able to really connect with a narrative.
Stories are authentic human experiences that transcend generations, engage us through emotions, and connect us to others. Through stories we share passions, sadness, hardships, and joys. Stories are the common ground that allows individuals to communicate, overcoming our defenses and our differences. They allow us to understand ourselves better and to find our commonality with others. If a narrative is self-relevant, it will appear more real and truthful.
Rewriting the Narrative
Aboriginal writer Thomas King reminds us that stories are both wondrous and dangerous things; wondrous because they have the power to connect individuals across differences, but also dangerous because of their potential to create barriers. Nigerian-born novelist Chimamanda Adichie warns about the danger of the “single story,” which represents individuals in only one way and, when told repeatedly, becomes how individuals are identified.
She reminds us that the single story “creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.” In order to remove the social stigma surrounding AD and other forms of dementia, we must move past the single story and replace it with a multiplicity of stories that proliferate individuals’ voices and diverse experiences.
If we, collectively, start listening to the narratives of individuals living with Alzheimer’s disease, as well as the narratives of their families and caregivers, and begin sharing their stories (told by these individuals in their own words), communicating the facts, and encouraging open and direct discussions, then perhaps a diagnosis will no longer be whispered in the corner of a room or ignored altogether.
The International Longevity Centre – UK (ILC-UL), in collaboration with various partners and stakeholders, has published a compendium of essays entitled “New perspectives and approaches to understanding dementia and stigma,” which examines the social stigma surrounding dementia. The report sheds light on the impact that the fear around dementia has on those living with the condition, their families, and their caregivers. The following is an excerpt of an essay that displays two individuals’ unique experiences of living with Alzheimer’s disease.
Sylvia and Bob Kahn’s Story – Overcoming the Stigma of Dementia
Sylvia is a retired solicitor and Bob is a medical writer. They have five grown-up children and 14 grandchildren, one of whom is a Dementia Champion. Since 2012, they have made approximately 15 joint presentations about living with dementia.
Bob: Sylvia, what has been your experience of stigma during these last seven years as you have moved through Mild Cognitive Impairment to vascular dementia to Alzheimer’s disease in January 2011, confirmed by several brain scans?
Sylvia: I don’t think that people can tell that I have Alzheimer’s by looking at me or talking to me. I don’t.
B: That’s true for short conversations, but your style of walking and the expressions on your face are distinctive. I looked up the origin of the word “stigma” and found it comes from the Greek word stizien meaning “to mark with a tattoo,” and in that sense you are not marked with dementia. However, the dementia is certainly affecting how you live.
S: Yes, I chose to give up my job as a solicitor; and I was required by the driving license authority to give up my absolutely clean driving license, which was fair enough, because you can’t have those of us with dementia driving along the road not being able to control their vehicles properly.
B: Not working and not driving are consequences of dementia, but not, I think, part of the stigma of having dementia.
S: Well, I think in a way they are part of the stigma of dementia. In this culture, not working and not driving are often viewed as a shame or social disgrace—which is precisely the definition of stigma.
B: OK, fair enough. Perhaps the first kind of stigma that people with dementia encounter is the fear of others to relate to them in any way.
S: Yes, those of us with Alzheimer’s are often deeply hurt when people are afraid to talk to us. Perhaps during the conversation we will repeat ourselves. So what? That’s life. You can still talk to us; and you may be surprised by how incisive some of us can be.
B: Agreed. We can each discover the reasons behind the behaviour and emotions of people with dementia. Being with you, the question in my mind is often “When in time are you in your relationship to your past?”
S: Well, when you ask a question, I can no longer give a quick, coherent answer. I have to think about it much more. I do live in a general muddle, but it’s spasmodic; and I’m never sure when a particular muddle is going to erupt.
B: Precisely, and that is the behaviour that leads those of us who do not yet have dementia to stigmatize those of you who do.
S: Why should you stigmatize us? We didn’t ask for the dementia. It’s not a crime. Earlier, I was sitting looking at the raindrops on the windowpane. They were large drops which distorted my view of the houses on the opposite side of the road. That is my experience of dementia – a blurring of reality, yet reality is still there, even if I am not fully aware of it.
B: Right, in my opinion you still have the ability to distinguish between reality and unreality. However, in the late afternoon and early evening as the sun goes down the distinction between the past and the present can become blurred. You do often experience “sundowning.”
B: What do you mean, “sniff”?
S: Well, you have to be honest and become aware of time changes, especially if they are starting to affect you.
B: Yes, your usual honesty is helpful, because other people need to know that in the late afternoon and early evening people with a moderate level of Alzheimer’s do experience considerable confusion about what is in the past and what is in the present.
S: It would be helpful if people knew more about “sundowning” and the experience of having Alzheimer’s, but most people don’t want to know. They turn away (or in your case, pick up a book) and continue with their lives, ignoring you.
B: Hum! Perhaps the most difficult stigma associated with dementia is the stigma that people with dementia experience within themselves—that they are (to use your phrase) “no good”—that they can no longer make a significant contribution to society.
S: Yes, I do want to help others and to make a contribution to society, if possible.
B: These conversations can help others. I am confident that both of us can overcome the stigma of dementia, both within ourselves and within other people.
S: The fact is that you give me a lot of strength because you are confident that I can manage to live well with dementia and not let it dominate our lives.
B: That is a beautiful response. I do try hard to communicate to you that we can still live lives of considerable purpose, overcoming both dementia and the stigma of dementia.
Source: MIND OVER ATTER – V5
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