After caring for her mother who had Alzheimer’s and vascular dementia, Sarah Reed created the best-selling Many Happy Returns cards and quickly became a passionate advocate of reminiscence therapies and activities. Ten years later, Sarah is a Dementia Communications Specialist who believes reminiscing isn’t only enjoyable for people with dementia, it can help boost their self-esteem. It can also lead to a few surprise revelations…
Over the last decade, many services and products have been developed to make life better for people with dementia and to help carers. Many Happy Returns 1940s and 1950s conversation cards were one of the first. The cards were launched in 2008, six months before the Department of Health Dementia Strategy was published. In the years before, I found the widespread clinical model of dementia care very dispiriting. With long personal experience of older people’s dementia care, I was dismayed by the way it disregarded their individual personas and disempowered them. I became a devotee of Tom Kitwood’s impressive work and inspirational approach to supporting the needs of people with dementia by focusing on their ‘personhood’.
We are all the sum of our life experiences, so my mantra is that we cannot care for people if we don’t care about them and we can’t care about them if we don’t know who they are.
It’s well known that in older age, most people – and especially those with dementia – enjoy talking about their earlier life experiences. Reminiscence isn’t only hugely enjoyable, by emphasising what someone can remember rather than what they have forgotten, it provides a much-needed boost to self-esteem too. We all carry our own histories around with us in our personal ‘brain albums.’ Focusing on and sharing them brings them back to life. For carers, this kind of information can make a big difference, it can help them to care for the person more meaningfully.
However, it’s also worth remembering that we all carry within us our private experiences as well; our secrets. You may think you know everything there is to know about your loved one with dementia, but the fact is you could be in for a surprise. I vividly remember a Many Happy Returns life story project at one care home delivering a surprise for two brothers whose mother’s life we were recording. They told us that their parents were pillars of the middle-class community – their father was a well-known national journalist. However, it turned out that there was a different, untold story.
Their mother told the carer assembling her life story album that she had spent her childhood in a pub in London’s docklands. Her sons were astonished. Their father, who had died a year or two earlier, had told them that she had been born and brought up in comfortable Surrey.
They were highly suspicious of the carer. Had she misunderstood, or even made up the story? Their incredulity was palpable. How could we believe her, a woman with advanced dementia? We tentatively suggested they might consider visiting the street she mentioned. They did, and were surprised to find the pub in question, named The Princess of Wales and to realise that all their mother’s stories tallied accurately with the reality. They decided to take photos which they then shared with their mother. These sparked even more memories for her. “Oh yes!” she said, revelling in a story finally told, “I used to answer the phone saying, ‘Hello, this is the Princess of Wales!’ … and there was the parrot that a visiting sailor gave me which amused the regulars, as it only spoke swear words!”
Although we were all concerned about the complex ethical issues related to both our enquiry and her revelations, it was clear that the knowledge her sons gained helped them to understand their mother better and allowed us all to interact with her more meaningfully. All of us eventually agreed that the experience had honoured her personhood and lifted her self-esteem.
As the wonderful Wendy Mitchell, who writes and talks about her experiences of living with dementia, shared with me, “I’ve often thought of this in terms of people with dementia – does a time come when you reveal the secret, having forgotten it’s a secret? And do the people around you then think you’re simply rambling some nonsense? Personally, I can’t think of anything people don’t already know about me, but then again, maybe that’s just because I’ve forgotten…Ha!”
So be warned; no matter how well we might think we know one another, there may still be deeper facets of their lives that have gone unsaid. But if we invite them to share a secret about themselves, and then honour it with integrity, the insight we gain can make a positive difference to how we relate to them, whoever they are. After all, everyone has the capacity to surprise us – whether they have dementia or not.