Hannah McQueen: Why the three years before a dementia diagnosis are the most important

Cognitive decline specialist GP says ‘we need to stop normalising memory loss’.

We’ve all done it. Misplaced the keys, forgotten a name, walked into a room and had no idea why.

But Dr Di North, a GP specialising in cognitive decline and healthy ageing, says, “We wouldn’t normalise chest pain. We need to stop normalising memory loss.”

Not every forgotten name is alarming. We’re all busy, tired and guilty of multi-tasking poorly. But repeated memory changes, especially when they begin affecting appointments, medication, finances, driving or day-to-day function, should not be dismissed as “just getting older”.

The biggest mistake we make is assuming cognitive decline is either normal ageing or inevitable dementia. Often, it’s neither.

Three years. Gone.

My friend, Claire*, watched her mother, Joan*, begin to change.

One of the earliest signs was a financial investment Joan had made but couldn’t remember. She quickly covered it by checking her bank accounts, but the moment niggled. That’s often how it starts: Something slightly off, or explainable, mentioned only to a family member.

By 2021, more signs were appearing. By 2022, Claire and her sister were concerned enough to act. They arranged direct debits, organised a Needs Assessment and Service Co-ordination (NASC) referral and made multiple trips to the GP. Blood tests were taken and referrals made, but no formal cognitive assessment was offered, and no specialist referral eventuated. Claire later discovered that the routine blood tests were never designed to identify dementia.

Then, in September 2024, a letter arrived from her GP. It said Joan had severe dementia and was no longer competent to manage her affairs. The letter activated her Enduring Power of Attorney. Eight months later, she entered residential dementia care.

From first raising concerns with the doctor to receiving a diagnosis took approximately three years.

“My overall experience was of a reactive system, under-resourced and at breaking point,” Claire says. “It was a waiting game of when someone broke before action was forthcoming.”

The grey zone

Before dementia can be diagnosed or ruled out, many people pass through a stage known as mild cognitive impairment. This is the grey zone, and it matters.

Once dementia is diagnosed, the focus shifts to treatment and slowing progression. Before that point, there may be far more opportunities to influence the outcome.

Cognitive decline is not always dementia, and some causes of cognitive decline can be slowed, improved or reversed. Around a quarter of people with mild cognitive impairment never progress to dementia at all.

Joan spent three years in that window. With the benefit of hindsight, Claire suspects it may have been longer.

The system did not miss a diagnosis. It missed an opportunity.

Dr North, who is part of the team at my preventative health and wellbeing organisation Age Brightly, says the average gap between first noticing symptoms and receiving a diagnosis is around three and a half years. Too often, that time is spent navigating referrals, waitlists and repeated advice to “keep an eye on it”.

But waiting comes at a cost.

Part of the delay is understandable. Dementia is frightening. Dr North believes many people now fear dementia more than cancer.

“We are our mind. We are our conversations. We are what we think and to lose that, we lose so much.”

The irony is that fear of dementia may be one of the very things stopping people from seeking help early enough to make a difference.

Mild cognitive impairment can be an early step towards dementia, but sometimes the cause is something else entirely. The answer is neither dismissal nor panic, but investigation.

A system built to react

The problem is not individual clinicians. It is the system around them.

A GP appointment is 10 to 15 minutes. A proper cognitive assessment takes considerably longer. It requires history, family input, functional assessment, medication review and often specialist support.

Uncertainty compounds the challenge. Is this normal ageing? Early decline? Worth pushing harder on?

That uncertainty tends to produce passivity, not action.

Dementia pathways were built for a time when the assumption was that little could be done. That is no longer true. But the pathways have not caught up with the science. As a result, the system often responds when someone breaks, not when they begin to decline, and the window quietly closes.

The science has moved on

The Lancet Commission on Dementia Prevention estimates that 14 modifiable risk factors account for around 40% of dementia cases globally. Research published in the BMJ found that up to 23% of people referred with memory concerns have a potentially reversible cause.

These can include vitamin deficiencies, sleep apnoea, hearing loss, depression, medication interactions and other treatable conditions.

As Dr North puts it, the grey zone is “the window in which the outcome can genuinely be changed”.

“If I were short of breath walking up a hill, I’d ask questions. If my blood pressure was climbing, I wouldn’t wait three years to see whether I had a stroke. If my cholesterol was high, I wouldn’t call it ageing. So why do we do that with memory?”

Claire and Joan are pseudonyms, but their story is real.

When I learned Joan’s story, I realised the problem wasn’t simply dementia. It was the years before dementia, when opportunities still existed to investigate, intervene and potentially alter the trajectory.

In many ways, Joan’s story became the catalyst for me to establish Age Brightly. It challenged me to think differently about what should happen in the years before a diagnosis, not just after.

Because decline rarely has a single cause. More often, it reflects a combination of medical conditions, medications, nutrition, sleep, mental health, sensory impairment and lifestyle factors acting together.

The challenge is to identify what can be addressed while there is still time to influence the outcome. To search for reversible causes, reduce modifiable risks and leave no stone unturned in the pursuit of better cognitive health.

Research from the Cache County Study suggests spouses of people diagnosed with dementia may face more than a sixfold increase in their own risk of developing dementia. Whatever the reasons, the ripple effects extends well beyond the person receiving the diagnosis.

The period before diagnosis is not dementia’s waiting room. It is a window of opportunity, giving a chance to investigate, intervene and, in some cases, change the trajectory.

If you or someone you love has noticed changes, now is the time to act. The window is open. It will not stay that way.

Five things to know about cognitive decline

Don’t lose the years before the diagnosis

The tragedy is not always the diagnosis itself. Sometimes it is the years lost before the diagnosis arrives. If something feels different, investigate it.

Don’t dismiss it. Don’t panic.

Memory loss is a symptom, not a diagnosis. Some causes of cognitive decline are treatable, and some are reversible. The answer is investigation.

Dementia affects the whole family

Research suggests spouses of people diagnosed with dementia may face up to a 600% increase in their own risk of developing dementia. Looking after carers matters too.

A diagnosis is not the end

A dementia diagnosis can be confronting, but it is not the end of the journey. It is the beginning of understanding, planning and accessing support.

You do not have to do this alone

Support is available. Whether through family, your GP, Dementia New Zealand, Age Brightly or community organisations, there are people who can walk alongside you.

Hannah McQueen is the founder and director of Age Brightly. She is also the host of The Next Bit podcast on iHeart Radio.

*Names have been changed