Module Three

When we talk about living with dementia, it’s important to listen to those who are experiencing it firsthand. They have a lot to tell us about how they want to be treated.

People with dementia often say they want to be seen as who they’ve always been — valuable human beings. They want respect, just like anyone else. They want to be treated with dignity, not pity or impatience. They are worthy of our time, our listening ears, and our understanding hearts.

And they want their voices heard. Even if communication gets tricky, they have the right to speak for themselves and make their own choices whenever possible.

As caregivers, it’s our role to honor these wishes. We’re here to support them, to help them hold onto their independence, and to ensure they feel valued every single day.

We’re not just providing care; we’re upholding their human rights. We’re reminding them — and the world — that no matter how dementia affects them, they remain individuals with their own stories, desires, and dignity.

When someone is living with dementia, their relationships with the people around them can change quite a bit.

They might find it harder to join in on social activities or to keep up with conversations like they used to. Imagine wanting to be part of a chat or a game, but the words just don’t come as easily, or you can’t quite follow what’s going on. It can be tough.

Because of these challenges, it’s common for people with dementia to feel anxious or frustrated. They might feel a sense of loss for the way things were before. Background noise that didn’t bother them in the past might now make it hard to concentrate, or they might not have the energy they once had to be social.

These feelings and difficulties can sometimes lead to them pulling back from friends and family, spending more time alone. This can be really lonely, and over time, it can lead to feelings of sadness or depression.

All of this can affect not just how they feel on the inside but also their physical health.

As caregivers, we’re here to help ease these changes. We can look for quieter places for conversations, find activities that match their energy levels, and give them the extra time they need to respond. It’s all about helping them stay connected to the people and activities they love, in a way that works for them now.

When it comes to coping with dementia, there are some key strategies that can really help.

Encouraging openness is one of them. It’s about asking the person with dementia to share what they’re feeling and what it’s like to live with the disease. It’s not always easy to talk about, but having that safe space to express themselves can make a big difference.

Building trust is another big one. This means creating a relationship where they know they can rely on you. Trust doesn’t happen overnight—it’s built through consistent, kind actions and by showing up for them, day after day.

Lastly, it’s important for the individual to feel okay about asking for help. No one likes to feel like they’re a burden, so it’s up to us to let them know it’s alright to need assistance. We want to make sure they understand that we’re here to support them, and it’s our job to help.

For us as caregivers, these strategies aren’t just tasks to check off; they’re a way of being, a way to make sure the people we care for know they’re not alone on this journey.

Let’s take a moment to listen to the heartfelt words from someone bravely living with Alzheimer’s. They remind us that both the person with dementia and their care partners, like Vicki, are deeply affected by this disease.

To empower persons with dementia to maintain their sense of self, family partners in care and health providers need to be mindful of a few things:

Firstly, involving them in their own care process is crucial. It’s about remembering that they’re not just patients; they’re people with preferences, experiences, and stories. Let them make choices, express their likes and dislikes, and have a say in their daily routine.

Patience is key. Sometimes, we may need to explain things a few times or try different ways to engage them in activities. Each person will have their own pace and comfort level, and it’s our job to adapt to that.

Now, let’s discuss three common reactions from partners in care and health providers that we should be aware of:

One reaction is gestures of dismissal, which can be subtle but harmful. It’s when we don’t take the person’s words or emotions seriously or overlook their input.

Another is smothering, where we might overdo the care. It comes from a good place, but too much help can make a person feel helpless.

Lastly, speaking about them in the third person or as if they’re not there can be quite demeaning. It’s as if we’re talking over them, not to them.

By being aware of these reactions and working to avoid them, we can better support the dignity and independence of those living with dementia.