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Understanding 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.

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