‘In a strange way, I feel I know my mum better now than I ever did’

There are a few moments that stick in my mind, like the first time my mum got lost walking the dog in her regular spot, and the Christmas that went rather pear-shaped when she realised that she hadn't put the turkey in the oven. In honesty, my creeping concerns had begun a year or two earlier.

I had noticed that my mum was repeating herself more than usual and getting muddled. She regularly complained that my step-dad was getting confused, which she put down to his increasing poor health and heavy drinking. I wanted to believe her – to think that it was him and not her – not least because she had always been so bright, clever and competent in everything she did. Frankly I couldn't imagine her being any other way. But, having spent so many years researching and understanding memory, in my heart of hearts I knew that what I was seeing was likely to be the earliest signs of Alzheimer's Disease. 

I spent the first four years of my academic career investigating normal age-related memory loss. While my PhD rested on running hours of experimental tasks on 60 healthy older adults, the real experience came from the day-to-day social interaction I had with these folks. I was welcomed into their homes, regaled with fascinating stories of their lives, and frequently interrogated on whether their latest moment of forgetfulness might signal early dementia. It was a true education into the importance of memory and the worries people have about losing it. But above all, and helpfully for my mum, I quickly learned to recognise what healthy cognitive ageing looks like and, by extension, how to spot when things are starting to go awry. 

Protecting and supporting memory

I eventually plucked up the courage to gently suggest to mum that I run my battery of neuropsychological tests on her. Alongside my regular academic work, I had spent a number of years working in memory clinics, developing my understanding of cognitive assessments and fine-tuning formal ways to capture and interpret those earliest markers of memory loss. The results of my mum's assessment were striking – the majority of her scores sat between the 80^th and 99^th centiles, putting her exactly where I would expect her to be, given her Cambridge education and career as a Consultant Psychiatrist. In stark contrast, her scores on delayed memory measures were on the 0.01 centile, poorer than 99.9 per cent of others her age.

The next conversation was difficult. My mum was – is still, as far as possible – a proud and independent woman. When I shared these findings, I could see the fear in her face as she desperately sought out other explanations. Maybe she was depressed, she thought? My step-dad had died the year before and it had been a difficult time. Her scores suggested amnestic Mild Cognitive Impairment, and at this stage, I told her, we could not know for sure what was causing it or how it would play out, but I did know that there were lots of active steps we could take to protect and support her memory. 

It took only a few days for her trademark optimism and resilience to return and despite her underlying worries, she quickly became pragmatic and very determined. She put her trust in me and as a natural scientist, she was happy to try out everything I threw at her. 

Fast forward 14 years, and my mum – now with a formal diagnosis of Alzhiemer's type dementia – is still happily living at home, albeit with 24-hour care. The progression has been resolute but slow and all things considered, she has a very good quality of life. At each stage of the journey, we have tried and tested different ways both to support her memory, and to reduce the inevitable anxiety that results from not being able to access the past. In the early days, her inability to lay down new memories hugely impacted on her capacity to socialise and manage her own affairs. In contrast, as is typical, her memory for the past was strong. So, to start with, we focused on techniques that aimed to improve consolidation of day-to-day events (e.g. daily journal writing) and to reduce cognitive load around the home (e.g. labelling cupboards, using a memory board). We also discussed ways that she could look after her physical health and improve her sleeping and resting habits.

Having worked with people with severe amnesia, I was acutely aware of the impact of losing old memories, which is what I knew she would be facing further down the line. So, drawing on my own research, we used a range of cueing techniques to curate my mum's most important moments and experiences, focusing specifically on those that were relationship- or self-defining. Interestingly, by implementing these techniques, I learned a huge amount about her that I had never known growing up, and in time this has proved incredibly valuable. Now – with her memories fading – I am able to focus conversations and reminiscence on the periods in her life that were happiest and which support her sense of identity. We can actively avoid those which have been more difficult or just less relevant. Most importantly, I know which cues work and we make every effort to surround her with these, to scaffold her sense of self.

Sharing what I have learned

A year or so ago, I had my own health scare. This has thankfully passed now, but it pulled me up by the bootstraps and made me realise how strongly I felt the need to share what I have learned from working with my mum. She is forever telling people how lucky she is to have a daughter who not only has concrete practical suggestions, but also understands what memory loss feels like. And for this, I have Claire to thank – an individual with amnesia who collaborated with me and others on several projects (see for example here and here). Among other things, she helped me to understand the impact of memory loss on social connection and introduced me to her Friendship Book, where she records important memories about key friends and family. We were able to create a bespoke version for my mum and I now include this in work I do with others.  

Taking this out to the wider world feels important and worthwhile but also a little daunting. How do I pull together 30+ years of memory research experience and 14 years of supporting my mum to create resources that are valuable to others? One of our recent projects has shown that people take different approaches to caring for people with dementia, and of course there is no one size fits all. So instead, my primary goal has been to create a deeper understanding of memory and of memory loss – particularly in family and carers, but also other health professionals – hopefully facilitating individuals to find their own ways. This week, I have released the first episode of Mempathy – a podcast series in which I talk with my friend Sonia Beldom about some of the common issues that people face, why these happen and evidence-based strategies that have been useful for me.

Alongside this, I have worked with Age UK Barnet and a former graduate of mine, Katie Grayson, to develop a four-week Memory Matters course. We have been running these workshops for over a year now and the feedback has been incredibly positive. They are targeted specifically at people with early stage memory loss, keen to take steps to protect and support their memories. Each session offers a mixture of cognitively stimulating activities, targeted reminiscence, psychoeducation, and everyday memory strategies to take home and try out. Above all, there is an opportunity for people to socialise and share their experiences. A priority now is to publish all of the resources we have developed so that they are widely available. 

My journey continues. Each stage brings new challenges but also new rewards. In a strange way, I feel I know my mum better now than I ever did and for now at least, I genuinely think she is content and comfortable. I want to acknowledge the role that so many others have played in supporting both her and me, both personally and academically. Special thanks goes to Claire and all those who have been willing to give up their time to act as participants for my research. But most of all, I am grateful to my mum for inspiring me to become a scientist and then trusting me to put it all into practice when it really mattered. 

• Listen to episode 1 now: dealing with sleep disruption in people with dementia-related memory loss. In this episode, Professor Catherine Loveday and Sonia Beldom speak about their own experiences of managing nocturnal mums. They then discuss the science underlying sleep, and Catherine offers some tried and tested evidence-based tips for getting things back on track.