“House of Memories is a very good idea put into practice”. So reads the opening sentence of Liverpool National Museums’ description of a training programme designed to enhance the lives of those with dementia – and I couldn’t agree more. As with all the best ideas, at its core lies simplicity, while its strength comes from its ability to develop in often unforeseen and beneficial ways.
Museums, of course, are repositories of past treasures. Expertly curated, they record people’s lives – not just those of monarchs and wealthy art collectors, but of everyday folks like you and me. So they are perfectly placed to aid those whose dementia has, amongst other its other cruelties, robbed them of their memories.
Three years ago, in January 2012, under the inspirational leadership of Carol Rogers, National Museums Liverpool launched its pioneering scheme targeted at the carers of people with dementia. Some 1,200 people employed in health, housing and social care used the training programme in its first three months and it’s gone from strength to strength – “buddy” schemes now exist in museums and art galleries in Salford, Sunderland, Birmingham, Leicester and Nottingham.
The advantage of the House of Memories is that the resources and venues it requires already exist. The same might be said of the care farms I featured in a recent post. Full of the sensory delights – of sight, touch and smell – from which people with dementia gain so much pleasure, farms are ripe for their carefully and sensitively supervised use.
In the same way, as the House of Memories notes, libraries, arts centres and theatres can provide the health and social care sector with the skills and knowledge to facilitate access to untapped cultural resources, often within their locality”. It’s a matter, as the website also states, of joining the dots.
The House of Memories’ training – which is free – centres on objects, archives and stories at the Museum of Liverpool. Actors convey the complexities of the various different, often confusing and frightening, situations facing people with dementia and show how their carers (family or formal) can support them using certain skills and resources.
The resources, or tools, may be everyday things from the past – songs, clothes, retail or utility bills from their era – that then trigger memories, providing a topic for conversation. In short, those with dementia and those who support them connect. They engage.
This human connection is, of course, what all good dementia care is very much about. The means by which the connection is made are, in truth, peripheral. I’m immediately reminded of Rachel Mortimer’s Brighton-based Engage and Create, which does what it says on the tin, reaching those with dementia through art; and of Sarah Reed’s “Many Happy Returns” reminiscence cards that spark life-affirming conversations.
The list, in fact, goes on and on. This is good, but also frustrating, because so often those I speak to outside what I term the “dementia community” (of which Rachel and Sarah are fully paid-up members) often have no idea that such inspirational enterprises exist. Not only does this mean that countless people so in need of support remain in the dark, but that passionate, innovative individuals operating in different pockets of the country are in danger of expending time, energy, funds and intellect on reinventing a wheel that’s already turning.
And this, I hope, is where I come in. It’s a year now since I set up my blog, which seems to have gained a life of its own and led me into a world inhabited by people whose lives (touched as they are, in one form or another, by dementia) fascinate, inspire and humble me.
In these past 12 months, as I’ve considered the condition that for so many years (including those when my mum was diagnosed with it) hardly dared to speak its name, I’ve come to recognise some common themes. By happy chance (or possibly not by chance at all), the House of Memories training programme provides ample opportunity to highlight them all.
In this Liverpool scheme – as with all the best dementia care – the interchange, or engagement, between those with the condition and those supporting them, is reciprocal. Monica Ellis, a care assistant who attended the programme, says that while the course enabled her to support people with dementia, it also helped her “not to feel so inadequate”. She talks of becoming emotional as she began to understand a little of how the world seemed to those with dementia, and how she could help them.
This brought to mind a post I wrote back in the balmy summer days. Its subject was Japan’s three eras of dementia care: first cure, then care and now reciprocity, where individuals are known not as “carers” or “cared for” but treasured partners. I remembered too the words of Sally Knocker when she told a conference that in the course of its reminiscence work her organisation, Dementia Care Matters, asked staff to bring in objects of importance to their lives “because we want them as individuals, not staff. Through reminiscence, connections are made and friendships formed”.
Along with this sense of reciprocity, the second theme to which I’ve found myself returning on an almost daily basis is that of simplicity. By this I mean that the most meaningful and productive ways to enhance the lives of those with dementia are rarely complicated or sophisticated – or even always expensive.
The House of Memories matches the professional curation of lives with a condition that, among other things, strips people of their memories. How sweet, how simple and neat is that?
Or let’s take Ken Howard’s proposal for what one might term “peer mentors”. Immediately at the point of diagnosis, says Ken, who has dementia – at the GP’s practice or memory clinic, wherever the initial diagnosis is made – the individual involved should be introduced to someone who’s been living well with the condition for several months. The two of them should be given the chance to sit down and have a chat over a cup of tea. Ken’s idea is a triumph of straightforward, common-sense kindness.
And finally, of course – almost too obvious to mention – there’s the person-centred theme. Seeing the person with dementia as a person. I say “almost too obvious”, but we all know that sometimes – with unimaginable consequences – the obvious is forgotten or pushed aside in the stress of a moment, through lack of proper training, under pressure of time.
Excellent care, as far as I can see, always has an element of “we’re all in this together” – you happen to have dementia (I don’t, though I could have) and I’m going to do the best I can to make your life better. This means knowing you for who you are (and who you were before dementia made your life different and communication difficult).
To this end, the various methods – music, museums with their professionally curated artefacts, drama and even apps – are put to good use. But they are simply tools. A means to an end, and that end is connection. Between people.
So whichever way you cut it, we’re back to us. Living, breathing humankind. Some of us have dementia, some don’t. How we deal with this irrefutable fact reflects on us all. Sometimes, in my darker moments, I think that may be why, historically as a society, we’ve been frightened to discuss dementia – too scared perhaps of the ugly truths we might discover about ourselves.
But then I pick up the phone to talk to a specialist dementia nurse, or a family carer such as Jan Inman I featured last week, or I trot along to meet someone who’s thrown in a well-paid job to start up a social enterprise aimed at improving the wellbeing of those touched by this pernicious condition. And I remember what it is to be human, what it is to know humanity, and I open my laptop and start to write in the hope that, just like the House of Memories, I too can join a few dots.