Exclusion: Two blogs for the price of one!

Hello again, friends.

I’ve been meaning pen a blog on inclusivity and exclusion for a while now, but I’ve been spurred into action after reading a wonderful piece by Dr. Shibley Rahman (a great champion in the world of dementia, and a man that I respect and admire) on LinkedIn this morning.

www.linkedin.com

Exclusion. What is it good for? Absolutely nothing.

Consensus conferences and professional guidelines (e.g.

So here is a sort of dual blog, where I’ll try to address the general topic of inclusion/exclusion in society and, as an added bonus, what inclusion/exclusion means to me on a personal level, and my tips for avoiding it.

Exclusion in Society

When Exclusion Doubles Up

I 've spoken before about how isolating dementia can be. It feels like a wall goes up between you and the world. Now, imagine adding another layer of bricks to that wall.

If you're from a minority ethnic group or if you are LGBTQ+, living with dementia can feel like climbing a mountain while wearing a heavy backpack. You face the stigma of dementia, but you also carry the weight of being "different" in a system that wasn't built for you.

This kind of exclusion causes real harm.

For example, many older LGBTQ+ people with dementia are terrified of needing care. They worry that a care worker or a support group won't accept them. They fear they might have to go back "into the closet" after spending years fighting to be open. That fear causes huge stress, and stress is terrible for our symptoms.

Then there is the barrier of language and culture. If English is my second language, I might lose the ability to speak it as my dementia progresses. I might revert to my mother tongue. If no one around me understands that language, I become completely cut off. I am not just forgetful; I'm silenced.

And let’s not forget faith. For many, religion is an anchor. If I can't remember the prayer schedule or get to the temple or church, I lose that comfort. Excluding my faith means starving my spirit.

Why the "Whole Person" Matters

When you ignore these parts of me, you aren't just leaving out a detail. You're ignoring the things that make me feel safe.

Inclusion is about safety and dignity. When you acknowledge my heritage or my sexuality, you help me hold onto myself. If I am confused about where I am, hearing a prayer I know, or smelling spices from my grandmother's kitchen, can ground me instantly. It brings me back to the room.

Knowing my partner is welcomed as my partner (and not just my "friend") lets me relax. When I relax, my brain works better. It is that simple.

How to Practice True Inclusion

You don't need to be an expert to make me feel welcome. You just need to be curious and kind. Here is a simple guide to making sure you are including all of me.

1. Don't assume, just ask. It is easy to assume everyone celebrates Christmas, eats the same roast dinner, or has a husband or wife of the opposite sex. Instead, try asking open questions. Ask me, "Who is important to you?" or "What traditions do you love?" Let me tell you who I am.
   

2. Respect my "Family of Choice" For many LGBTQ+ people, close friends are the real family. If I want my best friend to make decisions for me rather than a distant cousin, please respect that bond. They know me best.
   

3. Use the power of the senses. If I am struggling to speak, connect with me through my culture. Play music I grew up with. Cook a dish that smells like home. These things bypass the damaged parts of the brain and go straight to the heart.
   

4. Create safe signals. If you run a coffee morning or a social event, make it obvious that everyone is welcome. Put up a rainbow flag or a sign welcoming people of different faiths. A tiny symbol can send a huge message. It tells me, "You are safe here."

Exclusion and me

On a more personal note

I am writing this from my usual spot in my little study. As many of you know, I live with Young-Onset Dementia. That means my brain is changing. It loses keys, it loses words, and sometimes it loses the plot of the TV show I’m watching.

But there is something important I want to tell you today. My brain is not losing my history. It’s not losing my identity.

Dementia doesn't turn us into blank slates. We are still the people we were before the diagnosis. We have cultural backgrounds, religious beliefs, and people we love. Real inclusion isn't just about helping me with my memory. It is about seeing the whole person, including my ethnicity, my faith, and my sexuality.

Exclusion happens at a personal level too.

Imagine you are at a social event. Everyone is talking and laughing. You try to join the conversation, but people look right through you. Or worse, they look at the person next to you and ask, "Does he want some water?"

Hello!... I’m right here! I might have a wonky memory, but I’m not invisible.

Exclusion usually isn't cruel or vindictive. I know that. It often happens because people are scared. They worry I will say something odd or that they won't know how to handle me.

So, the invitations stop coming. The phone stops ringing.

The problems of exclusion are real:

• Loneliness: It leads to depression, which actually makes dementia symptoms worse.
  

• Loss of Self: When you treat me like a patient, I forget how to be a person.
  

• Fear: If I am isolated, I become scared of the outside world.
  

When you leave me out, my world shrinks. I fade away long before I actually leave.

Why Inclusion is Magic

Inclusion is the opposite of shrinking. It is expanding.

When you include me, you’re telling me that I still matter. You’re reminding me that I am still a friend, a dad, a brother, or a joker. You’re not just being "nice" (though that is good too). You’re helping keep my brain active.

Socialising is exercise for the brain. When we laugh together, my brain lights up. When I feel part of the gang, I feel safer. I feel human.

A Simple Guide to Inclusion

You don't need a degree in neurology to be a dementia friend. You just need to be a human being. Here is a cheat sheet on how to keep me in the loop.

1. Talk to ME, not my partner - If you want to know how I am doing, ask me. If I struggle to find the word, wait a moment. If I still can't find it, then you can look at my partner. But start with me. It shows respect.
   

2. Keep inviting me (even if I say no) - Some days, my brain is foggy, and I can't come out. Please don't stop asking. The invite alone makes me feel valued. If a big party is too much, ask me for a quiet coffee instead.
   

3. Lower the noise - I have trouble filtering sounds now. If we are in a busy pub with loud music, I might shut down because I can't hear you. A quieter spot lets me actually join the conversation.
   

4. Be patient with the loop - If I tell you the same story I told you ten minutes ago, please just roll with it. You can gently steer the conversation in a new way, but don't say, "You just told me that." That just makes me feel foolish.
   

5. Focus on feelings, not facts - Maybe I think it is 1995. Arguing with me about the year doesn't help. Instead, talk about how we felt in 1995. Connect with the emotion, not the logic.

A Christmas Call to Action

We are now very close to Christmas. It is a time for connection, but for many, it is the loneliest week of the year.

Here’s my challenge to you.

Look around your community this week. Is there someone living with dementia who might feel like an outsider for more than one reason?

Maybe it is a neighbour who doesn't celebrate Christmas but feels lonely while the rest of the street is partying.

Maybe it is a same-sex couple who have stopped coming to social events because it has become too difficult.

Open the door wider.

Make an effort to say, "I see all of you, and you are welcome here." Adapt your traditions to fit them, or better yet, ask them to share theirs with you.

Let's make this season about connection without barriers.

BE INCLUSIVE NOT EXCLUSIVE!

Merry Christmas, Happy Hanukkah, and a peaceful season to you all.