We’d like to share some thoughts on the recent Alzheimer’s Society campaign, which shows the struggles faced by people trying to come to terms with dementia – but also raises some big questions about how we view life with dementia.

Alzheimer’s Society have highlighted the support that family and friends need at different points when a loved one is living with dementia – this is hugely important.

But does someone ‘die’ each time an element of their dementia changes? We’ve seen something a bit different.

In our Effro dementia project, we’ve seen lives continue to be lived well with dementia. Memories celebrated, identities affirmed, and love continued. A holding of people affected – not a continual letting go of the people we love.

It’s crucial that each of us affected by dementia – ourselves or through a loved one – are aware of the hardships that lie ahead. This isn’t easy.
But we also know that leaving no room for hope, for joy, or for self-affirmation doesn’t help either.

It’s also important to note that everyone’s experiences of dementia – both of living with it, and living alongside loved ones affected – is as different and individual as the people themselves. We can’t generalise, or make assumptions that everyone’s experiences will follow the same patterns.

We have spent many years talking to people supporting a loved one living with dementia. We’ve discussed continuing the love, the admiration, and the respect they show – and not letting go of someone more each time dementia develops further.

That is what people have told us helps – love, celebration, and unity with others affected through what is often a very painful journey.

As Alzheimer’s Society have said, support is out there at every stage. And each stage, there is hope for more moments of joy as well.