People living with dementia and their care partners face stigma and discrimination in many areas of life. We described these experiences and harmful consequences in the previous section.
Our ultimate aim is to create an environment where people living with dementia and carers can live their best lives in a meaningful and safe manner. This means ending stigma. However, stigma reflects the culture and beliefs in society which can be deep rooted and have a long history. Thus, even with concerted effort, this type of social change takes time.
Because of this, it is also important to empower people living with dementia and carers, whilst supporting them to confront stigma and discrimination in a safe and meaningful way. We recognise this may take many forms and approaches. We provide a few examples from people living with dementia and their care partners here about how they have overcome stigma and discrimination in their own life.
For someone to accept that they have dementia is a difficult process. There is stigma. What I want is for people not to treat you differently. Don’t speak about me as if I am not in the room. People will talk past you but your close family and friends will understand. I overcome the difficulty by accepting my diagnosis. Accept that I have dementia. My close family and friends understand and that helps me enormously. That support. At first I didn’t accept it. I struggled. But then I started to work around the illness. What you need to do is accept it, make the most of every day. Accepting is such a big thing to overcome the stigma. I started telling people this is my condition. It is what it is, it’s not going to change. To tell people these are my circumstances. When I make mistakes, forgive me. If you said you are going to visit me or meet me somewhere, remind me. One should not take offense if people remind you. I use to take offense but not anymore. Sit and plan and say, I’m going to do this tomorrow. Make notes for yourself. I play these games, like [word]search games, I’m terrible at it but if I keep on doing it, I find it helps me remember things. That’s how it was for me.
I still have time to spend with my wife. We don't see stigma as negative we see it as a challenge another step in life
Again awareness can be created in schools during schools’ parents’ day meetings. This is a good avenue to reach so many parents at once and train them. Information can also be passed in churches, to ensure its spread to all community measures.
Yes, I need to support them [carers of people with dementia] by giving them courage from the experience I have learnt from Mother. When I do, they will be challenged to open up...
Awareness can be created through community dialogues.
…people need to be loved, need to be cared for and that you need to listen to them. As much as you know, you also need to give them space to be who they want to be ... so you need to be patient with them, understand them, and just listen
Initially we used to avoid social gatherings and not take my mother out, like for shopping and all, but we realised that somewhere we ourselves were harming her and contributing to stigma by hiding our mother and not disclosing her disease that she has dementia. It took us quite some time to change our impression about the whole thing. Now we take her to relatives' houses, social gatherings and tell people what dementia is. That it is a brain disease and there are many different things that happen (symptoms). We are a bit selective when it comes to taking her out to people's houses as many still don't understand why my mother is behaving so or they simply refuse to understand dementia as they have their own ideas about it.
