Sharing stories has been a comfort for generations, and yet we often stop doing it as we get older.

Only recently are we realising the importance of this for people living with dementia and their carers. Reading can help us recall happy memories, can be an escape from stress, and can return us to safe and familiar places.

At Scottish Book Trust, we know how meaningful this can be for people living with dementia and their loved ones. We run Reading is Caring, a tailored opportunity to support people living with dementia and their carers.

Before we started our Reading is Caring programme, a member of our team was reading with a lady in hospital whose dementia was in late stages. Each visit she read, unsure of the difference it was making. Visiting family shared their difficulties engaging with their loved one, who no longer spoke or reacted to them. Thinking of the lady’s lifetime love of gardening, she decided to read a poem about dandelions springing up all over an otherwise perfect lawn.

The lady’s face lit up. ‘They were the bane of my life!’ She exclaimed. ‘They were everywhere!’ The benefits of shared reading were also springing up: renewed connection, restored sense of identity, cognitive stimulation and, importantly, the joy and satisfaction for the carers themselves.

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In 2019, a study from Bartolucci and Battini demonstrated that shared reading had significant effects on people living with Alzheimer’s. Listening to relevant stories and interacting with the person they read with was found to delay cognitive decline and could improve their sense of self and mental wellbeing. The following year, Cambridge University Press published a 14-year longitudinal study, concluding that reading activity prevents long-term decline in cognitive function in older people.

In addition to the cognitive impacts, shared reading makes positive changes to the happiness and resilience of older adults. Reading is Caring’s independent evaluations have found that people living with dementia have improved mental health after enjoying personalised shared reading sessions. Their mood is brighter. They’re calmer, or more present. Sometimes they even speak for the first time that day.

On an ever-increasing to-do list, shared reading may seem like a luxury, but these changes are making daily tasks run more smoothly. Having a story or poem in your back pocket in stressful times can bring things back to a place of comfort and re-balance the relationship. For many, it’s now a valuable tool.

But, as in our dandelions story, the subject matter has to hit the right spot. As dementia progresses, the emotional regulation and the ‘feelings’ of a memory, in the amygdala, is usually affected later than the factual content and the ‘story’ of a memory, in the hippocampus. So, while the memories fade, the feelings stay.

One professional carer told us how this changed their relationship with the person they were reading with. “From spending a lot of time with her I knew that she loved her dancing (…) [knowing] that made the biggest difference. It was her mood that changed, it was unbelievable. When she died, her daughter wrote to me (…) and told me that even though her Mum’s memory had failed, ‘she still talked about you all the time, and her time spent with you reading’."

There are many people caring for the 90,000 people in Scotland who are living with dementia, professionally or personally. It can be forgotten that dementia also impacts on them and, through caring responsibilities or the changes to their relationships, they too often feel stress, grief or concern. Reading can reduce stress by up to 68%, a 2009 study found – and it works faster than other stress-relieving activities. And so, sharing this time together is helpful for care partners too.

In our evaluation, carers who used personalised shared reading reported improvements to their own mood, noting that they felt more connected, helpful rather than helpless, and that the practice often helped them with their feelings of loss.

Last year, our charity supported 150 people caring for someone with living with dementia to create personalised shared Reading is Caring sessions for free.

If you’d like to find out more, or support our charity, get in touch at readingiscaring@scottishbooktrust.com