The importance of a “timely” dementia diagnosis

The words “timely” and “early” are often used as if they mean the same thing, but when it comes to a dementia diagnosis, I think it’s important to understand the difference.

A timely diagnosis focuses on the individual taking into account their personal situation needs and preferences around when and how they receive the diagnosis. Early, on the other hand is more about the stage the condition is at and how soon the symptoms are picked up.

Getting a diagnosis of dementia is life changing and there is no one size fits all approach to when the “right time” is.

For some knowing as early as possible can bring a sense of clarity and allow for planning. Others the timing needs to align with when they feel ready to face that reality. That’s why a timely diagnosis, one that happens at the right moment for the individual is so important.

Several years ago, I was chatting with a lady, let’s call her Nora to protect her anonymity. She shared her experience of supporting her husband, Ed through the process of getting a dementia diagnosis and it’s a story that has stayed with me ever since.

Nora had been supporting Ed with dementia for a number of years unbeknown to her family. Whilst Ed did not have a diagnosis she knew in her heart he was living with dementia. She did everything she could to protect him.

Life at home became increasingly difficult. Social gatherings were carefully managed. They would attend family events as a couple for a limited amount of time which Nora knew was enough for her husband. They made their exit swiftly never raising questions from their family.

Things reached crisis point. Nora went to her GP and broke down. Through her tears, she shared confidentially just how difficult things have become at home. Ed was getting progressively worse and she was no longer coping. The weight of it all had become too much to carry alone.

Nora was overwhelmed with emotion she felt she had failed him even though she had done everything she could. Alongside the exhaustion came a deep sense of shame, shame for asking for help, for not being able to keep going and how her husband Ed of 40 years, a loving partner, father and businessman was living with dementia, a disease she knew little about.

It was shortly after this Ed received a diagnosis of Alzheimer’s Disease. By then his capacity was diminishing and Nora could no longer carry the weight of it alone or keep it from her family.

Not long after she sat down with her daughters and explained everything that had been happening. It was a huge relief. With the truth out in the open Nora and Ed were finally able to access a support system she hadn’t known existed. She told me she wish she’d reached out sooner.

Ed’s diagnosis opened doors to practical help, emotional support and connection with others going through the same thing.

Nora spoke with me at great depth, reflecting on how she wished she’d had the courage to address it earlier. I reassured her that she did what she felt was right at the time with love and protection.

I asked what message she would give to others in her position and this is what she said: “I spent years trying to deal with this on my own because I wanted to protect my husband and my family, but I think I did the opposite. If I could go back, I would’ve asked for help sooner. I would urge anyone in my position to reach out. There is so much support out there”.

Nora & Ed’s story is one of love and quiet endurance but also highlights how isolating it can feel when facing dementia without support. A timely diagnosis doesn’t just help the person living with dementia it helps those around them understand, plan and access life changing support.

If you’re worried about memory problems in yourself or someone you care about, don’t wait for a crisis. Reach out to local and national services there is so much support available.

Helpful resources (national):