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Reducing Stigma

There are a lot of stigmas associated with dementia that can hinder not only the person living with dementia and their families but also those that are working to support them. Stigmas impact on service structure, delivery, care and quality of life for everyone involved. They can have detrimental effects particularly for the person living with dementia.

When a person becomes stereotyped, ‘stigmatised’, it becomes difficult for them to be perceived as anything but that stereotype. They are then perceived through the lenses of that stereotype and labels are created within that perspective. The dehumanising of people often starts with stigma. Common examples of this with regards to dementia is the labels of behaviour such as aggressive and non-compliant. Once these labels have been associated with the individual person others will often only then see them through the lenses that these labels create. This could also be true for the perceptions of dementia being only about suffering.

Stigma can easily become our personal reference point and opinion and they can shape our knowledge and understanding on specific things without us even being aware of it. How often do we question what we think we know about something, question our perceptions and opinions? If we have been viewing and understanding the person with dementia from one point of reference, it will take self-awareness and work to change that point of reference. To break down the walls that perspective might have built so we can see them in a different light, from a different point of reference, through different lenses.

Once a stigma has been attached to a person with dementia it is very hard for the person to be perceived in a different way to what the stigma suggests – the stigma changes the lenses in which we perceive through and it can potentially influence how the person starts to see themselves. We also play a role in the perpetuation of that stigma. Unless we have enough self-awareness to acknowledge the possibility of being influenced by stigma associated with dementia and to look beyond the inference of that applied stigma, we will continue to limit our perceptions and experiences with people living with dementia.

Stigma leads to division and creates a ‘them and us’ mentality which breaks any potential for real genuine connection and engagement. This division then leads to a loss in social status for the person who is a ‘them’. And we ‘us’ who have stigmatised have shifted ourselves into a separate space from that group, one where we are more than, more knowing. We stigmatise people when we make judgements and assumptions about them, particularly if they are considered to be outside of the social and cultural norms. This isolates ‘them’ within a group of others we see to have the same difference. They then experience discrimination and from discrimination they become labelled and once labelled it becomes very difficult for that person to be perceived differently. A stigma or label carries a lot of weight and when attached to a person with dementia and it can be challenging for that to become detached from them. It can stick with them through their whole journey.

We can play a big role in debunking stigma associated with dementia, there is much we can do to advocate for the person, to support others to see the person first and challenge themselves with any stigmas they may hold about dementia and those living with it.

Stigma Potential Impacts for person living with Dementia
People with dementia can’t take responsibility for self or other. Feelings of disempowerment, frustration, disenabling, loss of autonomy.
Dementia equals suffering People just diagnosed may believe this is a certain trajectory of the disease and could reduce opportunity and or the belief that it is possible to live well with dementia.
People with Dementia don’t understand what’s going on around them. Disablement – can reduce existing abilities, leaves little avenue for a person to maintain abilities. Could leave person feeling useless, frustrated and a sense of no control. Lack of opportunity provided for participation in life.
People with dementia are helpless and need someone to take over things for them. Can be left out of conversations, ignored, not included, could leave them feeling isolated. Their reality and perspectives not taken seriously. Might experience being ‘humoured’.
People with dementia are not really ‘there’ / ‘here’. They are likely to experience the feeling of not being seen, understood, and acknowledged. Being look over – treated as an object more than a whole human being. Responded to and related to in this way. Can you imagine how this might feel?
If you have dementia you will become aggressive and have ‘behaviours’. When the person does make attempts to express themselves it is likely to be seen as a symptom of dementia rather than an expression of an experience of life with dementia. It’s likely with this perception that there will be little resolution to the underlying feeling / communication the person is expressing.
If you have dementia your personality will change. Any personal growth can be assumed to be because of the biological effects of the diseases rather than a psychosocial one. If any change is expressed the person may be overlooked as it is regarded as being the disease rather than an expression of the person as who they are now.
People with dementia don’t have capacity to make decisions for themselves. The person may experience others making decisions about them without them – this could be incredibly frustrating and disempowering. They may experience a sense of losing any control over their life, therefore a drastic reduction in autonomy and the human right to determine one’s life.
People with dementia don’t understand their reality as it actually is. Others perception of the person reality is being imposed upon the person with dementia This could be in stark contrast to what their experience actually is. If their experience isn’t understood or acknowledged it is hard to feel connected and ‘seen’ to and by others.
Someone with memory loss must have dementia. There can be many reasons for memory loss other than Dementia. Assuming someone has dementia because they have memory loss and are elderly could have detrimental effects. Particularly because of stigmas associated with Dementia and the impacts these can have on an individual.
Anti-psychotics and other restraints are needed for what is called “challenging behaviours”. The person may be medicated inappropriately and the impacts of this can be devastating to their physical and emotional psychological health. Some of which can be irreversible. This also doesn’t address the underlying issue that is being expressed / communicated through actions / other expressions. These issues could be physical, emotional and/or psychosocial.
People with dementia revert back to being a child. They will experience being treated as a child, this might feel incredibly patronising, and it disregards their life experience, capacities and abilities. The person may experience being undermined and not taken seriously.
There’s no hope if you have dementia. This can impact quite negatively in the person, others around them will be less likely to enable a positive future, and they might contribute less energy into the person with dementia then others. The person with dementia might start to feel hopeless themselves.

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