A lot has changed for me since my dementia diagnosis. It has been a long journey to diagnosis as my symptoms first started to appear in 2013. Actually, it was a huge relief to finally know the reason for the problems I’d been having.

One of the things that has changed the most is the way people act towards me.

I was very open in sharing my diagnosis with my friends and family. I thought it would help them to understand what I was going through and the difficulties I face.

Some of my friends express disbelief I have dementia, as they might only see me when I am at my best. They don’t see the real me.

I am starting to feel that some of my friends are starting to hold back, and they don’t like talking about the fact I have dementia. I feel really disappointed when I think of people who never speak to me since I have told then about my diagnosis.

I guess they don’t know how to deal with me now, or they think I’m going to make them feel uncomfortable or awkward. It’s probably just easier for them to stay away.

I am not sure if it is stigma or maybe they don’t know how to handle it and they then feel embarrassed.

I want to talk to the people I trust about how I am feeling and what I am going through, but they don’t want to talk about my dementia.

The lockdown hasn’t helped either.

Sometimes it is hard for me to keep up with conversations. When I’m in a group and there’s a few different people speaking I often lose the thread of what’s being talked about, so I just stay quiet. It can be a group of family or friends. I just don’t want to say the wrong thing and look silly. I wish people would understand that I can’t help it. Even if I can’t always carry on conversations like I used to, I still want to be around people!

I cringe when I hear people making light of dementia and I get hurt when people are critical of the behaviours of people living with dementia. Is this how people will speak about me?

It does get me down a bit. At first you tell yourself it’s not so bad, people just need to adjust. But when it keeps happening it starts to drag your confidence down.

Sometimes I think, “what’s the point in going out?” I want to see my friends and family, but when they dismiss me or talk down to me, it really hurts. Sometimes I think it’s easier to just stay at home by myself.

It is hard to avoid feeling hopeless sometimes. I just wish that people would understand that dementia is just something I have, it’s not who I am. 

Still, I do try to be positive. I think if people learn more about dementia they’ll understand and feel more comfortable around me. They’ll know that, even though I might act a bit differently, I’m still the same person. Then I’ll be able to enjoy spending time with them without worrying about how I’m being perceived. 

We need to get the message out that we need to talk to people and for people to understand. Otherwise, an enjoyable long goodbye could be a lonely one.