Dementia - The Life Left to Live

When someone receives a diagnosis of dementia, it is often life-changing. For the person themselves, and for their family and friends, the emotions can be overwhelming: fear, grief, uncertainty, and sadness. It is important to be clear that nothing I say here diminishes how devastating such a diagnosis can feel.

But, I want to hold space for another truth too: that a diagnosis of dementia does not mean life is over. Far from it. There is still life left to live and, in many cases, a life that can be rich, rewarding, and full of connection.

Conversation or nonverbal communication can still be had. Laughter can still be shared. New friendships can be formed, and old ones rekindled. People can continue to take part in the hobbies and activities they love, or even rediscover past interests that may have been left behind. Sometimes, this stage of life offers an unexpected chance to restart what once brought joy: gardening, painting, music, baking, walking, or simply the pleasure of sitting in the company of others.

Of course, living well with dementia also requires those around the person to adapt. Families, carers and communities play a vital role in making life feel comfortable, dignified, and meaningful. Small changes in approach can make a big difference. For example:

• Not correcting when someone becomes muddled. Instead of focusing on the detail, try to focus on the feeling they are expressing.

• Adapting activities so someone can still play a role or take part.

• Encouraging expressions of thoughts or emotions, even if the words don’t always make sense. What matters is the connection and validation.

• Creating a calm and comfortable environment - familiar items, favourite music, or a cosy space can reduce anxiety and promote reassurance.

• Being patient and gentle when responses are slower or less clear. Rushing only increases frustration for both sides.

• Active listening - really tuning in to the person’s tone, body language, and mood. Often, what’s being communicated goes beyond the words themselves.

These approaches not only support the individual with dementia but also reduce strain on families and carers by easing moments of tension and creating more opportunities for positive shared experiences.

The earlier we begin to think about what kind of life we want to live following a diagnosis, the better. That’s because remaining engaged, fulfilled, and socially connected has a protective effect not only on the individual’s wellbeing, but on their family and carers too. Dementia does not erase the value of meaningful human connection, and in fact, nurturing it becomes even more important.

At The Filo Project, we see this every day. People thrive in our small, home-based groups where they come together to socialise, take part in gentle and bespoke activities, share a meal and most importantly, feel that sense of belonging. We witness the spark that comes from being part of something, from being listened to, from having purpose and companionship. Families tell us how much lighter life feels when their loved one is relaxed, smiling, and engaged.

And this brings me back to those two truths. Dementia is challenging, hard, and often painful. There is no denying the reality of loss and the difficulty it brings. Yet alongside that, there is also an opportunity: to strengthen and rebuild relationships, to form new ones, and to discover things about each other that perhaps we never knew. It can be a time when bonds deepen, when love and patience grow, and when life takes on a different, but still meaningful, shape.

So, while dementia closes some doors, it also leaves others open. Our challenge and our privilege is to walk through those doors together, to embrace the life still left to be lived.

By Jude Pinder

COO, The Filo Project