Bake Tell Tarts

What if you could use the nation’s love of cakes and the universal language of baking to open up conversations about dementia? This was the innovative, fun approach taken by Emma Harding in Bake Tell Tarts, a workshop at Normal? Festival of the Brain. 

Dementia - an umbrella term used to describe a range of conditions that affect the brain – is experienced by more than 850,000 people in the UK. And there are more than 200 types of dementia. These figures may seem surprising, and that’s because the condition’s impact on those living with, or caring for, those affected is still relatively unknown. 

Harding combines her love of baking and her position as a researcher at UCL’s Dementia Research Centre to push the conversation forward. After a brief roundtable, workshop participants brainstormed ideas as to who could benefit from learning more about dementia. Imagine the difference it might make if shopkeepers were more aware of the challenges a seemingly everyday task – shopping – presents to someone with dementia. Or if politicians kept this demographic in mind when allocating resources to health budgets and support services. For this to happen, we need to talk about the condition. 

And this is where the cakes come in. 

Through the practice of creating icing stamped with dementia-related phrases, I participated in conversations about the experience of living with the condition. These phrases: still the same old me, life is not overemphasised the idea that those with dementia do not want to be defined by it; that it is a part of their identity rather than the whole. 

Once complete, the cakes could be used outside of the workshop environment to continue the conversation, spreading awareness of the condition and, perhaps increasing empathy. 

Bake Tell Tarts’cake-led engagement is a delicious way of exploring, challenging and shaping understanding of dementias through the creative arts. It is especially relevant as cooking and baking is an activity that stimulates the senses, and for some with dementia, can trigger memories related to food – a powerful and positive experience. 

Cakes bring people together. How wonderful would it be if, alongside eating them, we could have a fuller, more realistic conversation about the experience and impact of dementia on society. 

- Charlotte Forfieh

Links relevant to this diagnosis:

BakeTell Tarts

Activities for People with Dementia Based Around Food - Social Care Institute for Excellence

Her Memory Fading, Paula Wolfert Fights Back With Food - New York Times

Dementia UK

5 Things You Should Know About Dementia - Alzheimers Society

University College London Dementia Research Centre

Created Out of Mind

Descent // A Moment White Productions

In Ancient Greece, tragedy was when a character fell to an inevitable fate, usually the consequence of some small mistake in their past. Attempts to escape or thwart this fate only locked them in more tightly. By this definition, Descent is a true tragedy, except that the past mistake was not the central character's but perhaps a small, undetectable error in his genetic code that made him susceptible to dementia.

For Rob, it starts with the loss of his pen, hinting innocuously at memory problems but actually foreshadowing the fundamental loss of identity that dementia will bring. The turning point is when he loses his temper with his daughter over a trivial board game. He accuses her of cheating, calls her a bitch. Research shows we perceive that someone with dementia has changed not when they lose their memories, but when their moral compass goes haywire. 'That's not him', Rob's daughter tells us.

Rob feels himself 'metamorphosing', referring explicitly to Kafka's novella. There is now a hard shell that stops him caring so much about other people's feelings. But it is not only Rob who is in descent. His wife, Cathy, is undergoing her own transformation as she takes on the responsibility of caring for her husband even as he starts caring less for her. The actors playing the couple in this production make their metamorphoses stark, seeming to age years under the stage lights even as the lights in both their eyes go dim.

Rob experiences paranoia - he suspects everyone of moving or even hiding his pen - and is at times physically aggressive towards Cathy. These are common, if less well-known symptoms of dementia. There are hints, too, at the incontinence and loss of physical control that follows. Rob and Cathy are still in their 50s - the prime of life. They were not expecting to have to consider carers and care homes. About 4% of people with dementia are under 65, and it can bring different challenges to living with dementia in later life. It can be harder to recognise and diagnose, and can mean more impact on younger families. Cathy starts grieving Rob before he dies. He has already gone, and the rest is inevitable.

- Michael Regnier

Links relevant to this diagnosis:

Descent

Early-Onset Alzheimer's Disease - Alzheimer's Research UK

Symptoms - Alzheimer's Society

Carers: Looking After Yourself - Alzheimer's Society 

Neurodegeneration and Identity - Psychological Science (2015) 

The Inevitability of Tragedy - Edge Induced Cohesion (2013) 

Dementia Friends

At any one time one in fourteen people will develop symptoms of dementia, meaning all of us are likely to at some stage in our lives come into contact with someone affected by it.

Elizabeth Taylor from Dementia Friends enlightened us at Normal? Festival to some of the myths and misconceptions that have built up around dementia, and offered practical advice as to how we might help. Some of her stories of people's experience were unexpected. I for one did not realise that the large black doormats, so prevalent in shops, have sometimes posed a real fear for patients she has worked with: they imagine they will fall into a dark hole! I'm sure many of us remember as a child not walking on the lines of the pavement for that same reason, as in A.A Milnes poem ‘Between the Lines’. Elizabeth describes dementia as a bookcase of the crappy MDF sort, each shelf representing a decade, with the most recent years on top. When someone shakes the bookcase, the most recent books and memories fall first.

People can live well with dementia, so why is it still such a taboo subject? Dementia Friends aims to encourage positive steps, small things that make a huge difference. It reminds me of the words of the poet Rumi - ‘drive slowly, some of us walking alongside are lame’. Often, we cease to see the person and define them by the disease. Elizabeth's example is of Mabel, who loves gardening and has “green fingers” also enjoying baking amazing cakes. So why is it that when people talk of her she is just Mabel with dementia? If we can take one positive from the talk and be a dementia friend it must be ‘Please Don't Label Mabel!’. (SE)

- Sandra Elkins

Links Relevant to This Diagnosis:

Dementia Friends - https://www.dementiafriends.org.uk

Age UK – Help and Support for Dementia

A Walk Through Dementia - http://www.awalkthroughdementia.org

Share the Orange - https://www.youtube.com/watch?v=x9MvEZskR6o

sharetheorange,danceforlife,dontlabelmabel,dementia

Living Words // Shutnell

A brain themed game of piñata offers up the first of many glimpses into the world of those living with a dementia. Eleven minutes of fragmented insights. The thrum of an MRI scan; just ankles, stripy socks and a mark on the bottom of one shoe to contemplate on.  We wait for a bomb to detonate, loud beeps marking the countdown. A calm plunge into deep water as internal chatter is left behind. The jerky mesmeric dance of communication even in the end stages of a disease that has stripped away brain function. Words. A soundtrack of words. We are asked to consider the invisible thread that links two brains through the medium of communication. Where does one person end and the other begin?

Susanna Howard, artistic director of the Living Words charity, has spent a decade working with people living with a dementia. Going into care homes and hospices, her team of writers offer people the opportunity to rediscover their voice. A voice they might have lost during the progression of the disease. By recording and reading aloud the words of those they work with, they gift families and the individual themselves a chance to see themselves as a person again at a time when it is all to easy to see just a disease. Howard has previously written, directed and produced two stage productions on similar themes for the Normal? festival and this year her process has evolved into a short film of enquiry into the quiet, noisy, joyful, tearful, angry, peaceful world of a dementia.

Tracy (published poet), Wayne (passionate campaigner) and Glynis (keen gardener) join Susanna both in the film and on stage afterwards for a discussion around what it's like living with a disease that affects one in three people over the age of 65 in the UK, and increasingly those nowhere near that age. David comments on the choice to include three people recently diagnosed with a dementia rather than those in the end stages, and we are reminded that each of these human beings are living well in abundant family and friend filled lives.

I leave the auditorium considering the importance of the acceptance of life of life’s terms, no matter the steep cliff faces we have to climb and the immeasurable value that comes from being a mindful and aware participant in the journey. In a world fraught with division, anger, isolation and lives often lived out of sync, I'm reminded of the potential for interconnectedness that breathes and evolves through communication, no matter its shape. 

‘It's like we become each other when we are really listening.’

(MJ)

- Melissa Jacob

LINKS RELEVANT TO THIS DIAGNOSIS:

Living Words - http://livingwords.org.uk

Dementia Friendly Kent - http://dementiafriendlykent.org.uk

Alzheimers Society UK - http://www.alzheimers.org.uk

Finding the Poetry in Dementia - https://www.agingcare.com/articles/finding-poetry-in-dementia-157152.htm

Only the Lonely - https://www.unforgettable.org/blog/only-the-lonely-dealing-with-loneliness-and-isolation-in-dementia/

Dementia Dialogue // Knitting for Well-being

In going along to Knitting For Well-being with Dementia Dialogue I had no idea what to expect, especially as I've not picked up a pair of needles in decades.  The group was small and informal, the wools were plentiful, and rooting around for matching needles set the session off to a playful start. We were a mix of older and younger people, with many of the older peeps having knitted before, but fallen out of the habit. It was led by Angelica Welzel-Connolly, who wanted to teach a Dutch version of 'casting on'. The rest of us were digging into our familiar pattern, if you'll pardon the pun, of doing it as we always had.  

Knitting is being adopted for dementia clients, and found helpful in a range of ways, especially in terms of its social engagement. This is a two-hour class that Angelica teaches to sufferers of Dementia and I can well see how that would connect a person to past memories, as it quickly plugged each of us who'd knitted before into our early memories from when we first began knitting. The participants were encouraged to make one of two bag styles. There was a wee one, as I made (big enough to fit a book of stamps or a few coins), or something a little larger that would carry a purse/phone/keys and would require a reinforced woollen handle.

What I hadn't expected was the connection I made with fellow participant, Sandra, where we encouraged each other every step of the way.  As our knitting grew so did our friendship. We veered off-pattern in cavalier fashion, and wandered off-topic reflecting on how as kids we'd been able to have the sorts of outdoor adventures children are no longer able to. We chatted over childhood teachers, Sandra remembering Mrs Mackenzie who taught knitting by rote, using the repetitive phrase; up, round, down, and off, until they were immersed in its hypnotic mantra. My mum taught me to knit at Nelly's Knee; observing her actions sitting by her side, a copycat method that carries through to now, where my how-tos are found on YouTube. Sandra and I laughed hysterically at times as we bonded over the needles. 

I can see how a small group number would work well with Angelica's clients.  It made me think of the Lewy Body Dementia condition my mum had, where this activity's informality, chatter, the stirring of dim and distant memories (real or imagined) within an informal atmosphere such as this would have suited her timid shyness rather well. And her arthritic fingers would easily be accommodated with methods I've seen demonstrated by local knitting guru, Debra Nash, who teaches finger and arm knitting in Folkestone. A highly inclusive approach. All in all a relaxing, big fun session, where we were left to our own devices, and every required material was at our disposal.  Shortly afterwards Sandra and I made a short video sporting our results: https://twitter.com/TSOTFringe/status/868148450722033665 (JU)

- Jane Unsworth

Links Relevant to this Diagnosis:

Dementia Dialogue

Ask the MD - FAQ on Lewy Body Dementia

Tatty Bunting - Folkestone Knitting Group

Alzheimers Society - Improvement Through Knitting

Cast On Stitches