The diagnosis of dementia is stigmatizing. Many individuals report a great loneliness when they receive this diagnosis — their family and friends melt away.
Why is this so?
The stigma of dementia hits us individually in the way we think about ourselves. It affects our social networks with our family and friends. And it also affects us in the way the healthcare system and our country approaches the disease.
Starting at the Top
The way our country approaches dementia has a big effect on how individuals experience the disease. There is the cultural context that contributes to stigma by spreading or reinforcing stereotypes
Mass media (newspapers, movies, television, etc.) is very important at this level. By emphasizing violent or inappropriate actions by people with a definable illness or condition, these forms of media can contribute to very negative attitudes. This is particularly significant when this focus is never offset by an emphasis on positive actions by the same group.
For those without personal experience of the reality of living with the condition, these media portrayals play a key role in constructing their understanding of the condition.
Think about media portrayals of dementia. Often, we read about violent interactions. This creates a climate of fear for anyone who is unfamiliar with people with dementia.
Think about your own perception of individuals with dementia.
I know I have often met people who associate dementia with violence. They are reluctant to work with individuals who have dementia, afraid of their reactions.
Since media typically reports the unusual or the crisis events of the nation, it is not surprising that we hear about the violent interactions of people with dementia. The unfortunate side-effect is that it shapes the national conversation.
This national conversation is very important. This conversation shapes our country’s culture and its history and it defines the “appropriate response” to different conditions or behaviours.
For instance, one country’s national context may deem it more appropriate to put a chronic sleepwalker in a locked ward while another country may deem it more appropriate for family members to care for them at home. Although not all citizens of the country might agree with what the national context seems to think is appropriate, it will be the society’s prevailing norm.
The appropriate response to individuals with dementia is beginning to change. The national conversation is starting to attempt to avoid the overuse of anti-psychotic drugs and to make communities dementia friendly.
Different social networks and organizations in society can increase or decrease instances of stigma depending on their approach.
Social networks. Everyone has one and they are incredibly influential in spreading or combating stigmatizing behaviours. We know that having personal contact with different sorts of people helps reduce attitudes that contribute to discrimination. This is only true where the contact is on-going and positive.
If you had a one-time negative experience from meeting someone living with dementia, it would not do much to increase your understanding or counter negative stereotypes you receive from elsewhere.
The Dementia Friends initiative is an initiative that aims to combat this stigma at the social level. Individuals are encouraged to have friends who are challenged with dementia. Through friendship, there is understanding and support. Friendship goes a long way to reducing stigma and impacting the life-experience of individuals with dementia.
One of the most important organizations to affect stigma around different medical conditions is of course the health care system, which differs from country to country (or even province to province!). Researchers have pointed out that even by giving a diagnosis, the health care system can expose individuals to an intense experience of stigmatizing behaviours. Although people still need the correct diagnosis, it is crucial that the system and the professionals within it understand the context in which people are receiving that diagnosis and work to counter mistaken ideas or exaggerated fears.
With a dementia diagnosis, it is important for doctors to ensure they can deliver the news in a humane manner. There is a lot of support for individuals with dementia and it is important that they get access to what is available in their community. Doctors need to take advantage of ongoing education to ensure they are always aware of the resources available to individuals in both the health care system and the local community.
At the Personal Level
At the personal level, there are psychological or individual factors that can increase instances of stigma.
Illness characteristics. The more obvious it is that someone is living with an illness or condition or the more significantly they act outside or against social norms, the more likely it is that they will be stigmatized by people around them.
Dementia is a difficult disease to live with. There is a fear of being abandoned by those closest to you. Often there is denial by both the individual and family members and that makes it difficult for the family to plan an appropriate way forward.
Dementia can be a confusing disease for families to deal with. They may not know the best way to deal with the individual on a personal level. Since it is painful to interact with mom or dad, sometimes family members withdraw from the relationship. This creates a great deal of loneliness and frustration for the individual with dementia. Often, they cannot express these feelings easily and it comes out in difficult behaviour.
As well there is the issue of self-stigma. Self-stigma occurs when the individual with the stigmatized condition consciously removes themselves from social settings or interactions. In the case of dementia self-stigma is driven by the apathy that is symptomatic of the disease.
While we don’t have a cure for dementia, there are lots of ways to improve quality of life for dementia sufferers.
Stigmas about individuals with dementia negatively impact our health care approach, social support systems and family dynamics. They don’t really add anything to the conversation we have or should have about dementia. While there are many organizations that are working to change the conversation at the national levels in countries around the world, the most important conversation to change is the one we have with ourselves.
When we focus on our own attitudes about dementia we can have a far-reaching impact. Stigmas are walls that separate us from others and don’t really add to the quality of human life.
Every person needs friendship and support, no matter where they are in their life journey. Individuals with dementia are no different. Treating an individual with dementia with empathy, affection and understanding will change their world. And at the end of the day, that approach will have a profound effect on you.
Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.