The earlier you know, the more you can do

The moments would pass and for nearly two years I allowed myself to believe I was imagining it, or that it was simply a reflection of the stress my mother was under caring for my step-father. She had always been so sharp, always the one we relied on and turned to for advice. It seemed inconceivable that she could ever be anything else, yet still I had a growing sense that I was seeing the first signs of Alzheimer’s Disease.

My mum and I are lucky. I had spent the early part of my career researching normal age-related memory loss. Thanks to the hours I spent assessing healthy brains, I knew what “normal” looked like and I recognised that my mum was heading down a different path. The memory lapses became more persistent and I realised that I couldn’t hide from it. I knew that an early diagnosis would allow her to make critical decisions about her future while she still had the capacity.

It took a while for me to pluck up the courage to have that first conversation with her, but I am so glad I did. She was nervous, but as a medic, she was receptive to the idea that knowledge was power, and that it was important to rule out other causes of memory impairment. At the time, there was no clear path to an early Alzheimer’s diagnosis, so I used my training as a neuropsychologist to evaluate her myself. Sadly, these did reveal the tell-tale signs of early Alzheimer's Disease, something that can be picked up much more easily now through recently developed blood tests. It was a number of years before my prediction of an Alzheimer’s diagnosis was formally confirmed, but by then she had already taken positive steps and laid firm foundations for her future.

As a memory scientist, I knew that putting practical strategies in place would reduce stress, which in turn may positively influence brain health. I showed her how to make better use of diaries and calendars, she spent time with my sister labelling cupboards, we created lists of useful information that could be quickly accessed and put a memory board up in the kitchen. People often ask me whether it is cheating to write things down, they worry that it will make their memory worse. The evidence tells us quite the opposite. I tell them to think of it like putting on a pair of glasses if you’re short-sighted.

I also persuaded my mum to start writing a short daily journal each evening, and to regularly review previous days. This is a simple but incredibly effective way to rehearse memories, and it really can make a difference. My mum continued to do this for nearly ten years, and even when that became difficult, she moved on to a simpler version with photos of the day. Drawing on my own research, I spent time curating my mum’s memories of the past – identifying places that had been important, experiences that shaped her life, and music she would take to a desert island. I cannot tell you how invaluable that information has been in the latter years and this process has been incredibly bonding.

Wanting to give her brain the best chance, my mum was also strongly incentivised to look after her general health. She walked regularly, ate well, spent quality time with friends, looked after her heart, and found ways to rest and relax. We were able to discuss the future, to understand where her red lines were and to work out who she wanted to entrust her finances and health to. The stigma around an Alzheimer’s diagnosis can be very damaging, so I created an information document for friends and family in an effort to create a deeper understanding of my mum’s condition and to bust some of the myths around what she could and couldn’t do. This reduced feelings of apprehension in those around her, which helped her to maintain important relationships.

None of this has been easy, but my mum has always identified as a survivor. Spotting the symptoms early gave us some huge advantages and I’m happy to say that while she now needs a high level of care, my mum still has a very good quality of life. We recognise the privileges that she has – a good education, financial security, strong social support, and resident expertise – but I also believe that most people can benefit from at least some of these techniques. I also think it is vital that society develops a deeper understanding of what that lived experience of Alzheimer’s feels like, so that rather than running away, we can work together to create a society where people can live well with dementia. And while I recognise that everyone has their own unique story, I firmly believe that the earlier you know, the more you can do.