Pippa Kelly …

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Jorg Roth is the founder of My Life Films, a charity that makes professional quality, bespoke autobiographical films of people with dementia, for no charge to them or their families.   The films are skilfully edited, divided into short chapters depicting important periods of the individual’s life, so that he or she doesn’t have to concentrate for too long, and set to a soundtrack of their favourite music. 

Roth came to dementia not as a carer or medic, or a professional from the social care world, but as a successful film maker with a wealth of experience. He’s a creative with a commercial approach to dementia.  But don’t switch off at the sound of what he himself calls the “C word”. 

Commercialism, he says , can be good.  He knows that if people with dementia don’t rate, like and use his product, it won’t fly.  For him, the user experience is king.   And the users of his product, his customers and consumers, are those living with the condition.  As they might put it:  nothing about us without us.

The making of the film, the collecting of old photographs, memories and stories of its subject, is as rewarding as the highly watchable result.  Since the charity was set up seven years ago it’s produced 300 films that have benefitted hundreds of individuals, families and carers.  For, as well as the longer film, the feature-length event as it were, My Life Films also produces a short five minute, narrated version of the person’s life for formal carers so that they can get to know and really understand who it is they’re caring for. 

The finished film is premiered in the presence of its star and their family and friends.  The impact on all involved is extraordinary and very moving.  Some of you may remember my podcast with Mike Parish whose partner of 45 years, Tom Hughes, has dementia.  Mike commissioned a My Life Film for Tom and says that every time Tom watches it he’s transfixed. 

“The personalised music captures his attention in a way that TV burbling in the background wouldn’t,” says Mike.  “And it’s a treasure forever.” 

A My Life Film bring families together, gives friends an understanding of dementia they might never have had, and is now impressing the medical profession.  A recent study at St George’s NHS Mental Health Trust in London concluded that My Life Films can lessen the behavioural and psychological symptoms of those with dementia and improve their quality of life, as well as enhancing relationships between carers and those they care for and reducing medication.  Another evaluation by Hampshire County Council revealed the same beneficial consequences.  

More recently, during lockdown, Jorg and his team have set up My Life TV, aka Netflix for people with dementia, with on-demand programmes as varied as specially designed quizzes, singalongs, chair yoga, nature programmes, archive news and shows.   Individuals and care homes can sign up for monthly subscriptions.  The modest fees help finance the My Life Films. 

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunes, Acast, Spotify, Google, Podtail or Castbox.

For my series finale I have not one, not two, but THREE guests – I see them as dementia’s answer to the three musketeers. 

They are the Bard of Barnsley aka Ian McMillan, a man with so many titles it’s difficult to know which to choose, but I’ll plump for poet, comic & broadcaster;  internationally acclaimed photographer Ian Beesley; and last but by no means least, one of the UK’s most prolific & best-loved cartoonists, not to mention previous Well I Know Now guest, Tony Husband. 

They are all highly creative, very successful & on a mission to help those with dementia lead happier, easier, more fulfilled lives. Their latest collaboration is a colourful one with a powerful past that stretches back to the 18^th century when trades unions were illegal and women’s votes were a long way off. 

They joined me to chat about the The Unfurlings.  A series of richly & traditionally embellished banners which they created with people living with dementia to illustrate the best – & worst – aspects of how we as a country and a society treat those with the condition. 

Brought together in 2018 through a series of what sound like fairly riotous workshops in Exeter, the trio – along with people with dementia – compiled comments, poems, cartoons & photographs to help the public better understand what it’s really like to live with the condition.  

And in that same year, the first banner was created with Yorkshire dementia & empowerment project, or DEEP, who were campaigning for those living with dementia to be better served by public transport.  The Right to a Grand Day Out, as it’s called with a nod to Wallace & Gromit, was unfurled in the middle of the rush hour at York station, with Ian McMillan reading his poems.  Which is altogether a wonderful image.

Many more banners followed – from the Young Dementia Leeds Cottingley Crew marching forward together against dementia to the Budding Friends Allotment Project in Exeter digging for memory & growing stories, the Hamari Yaadeen South Asian dementia café in Leeds & Bradford’s Face It Together group who work with local businesses to make facilities such as cash machines more accessible.

What links them all is colour, humour, understanding, warmth, local knowledge & a sense of shared history.  Banners traditionally represented hope for the future, they showed what ordinary people could achieve when they united in a common cause. 

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunes, Acast, Spotify, Google, Podtail or Castbox.

Lenny White, the world’s first dementia-friendly barber, lives in Northern Ireland where, at the time of recording, the date for the reopening of salons and spas had yet to be announced but it will surely be very soon. Before the pandemic hit, Lenny took his skills – and all the trappings of his cut-throat profession – around the UK and as far afield as America and Canada, setting up shop in two care homes in New York and cutting, pampering and wet shaving Auschwitz survivors in Montreal.

Lenny’s customers are all special. All live with disabilities or are vulnerable in some way, and he concentrates his considerable energies and passion on those with dementia. It seems a strange occupation for a man who worked in sales for 20 years. But from a young age Lenny has always enjoyed getting to know people; he was just 17 when he first worked in a care home as a kitchen porter.  Even then he liked to wander into the wards and strike up conversations.

So when, in 2015 he found himself re-evaluating his life after a divorce, he decided to return to the care sector, first as a carer and then as a care home barber. He’d realised that there wasn’t enough to occupy men living there; while many homes boasted women’s hairdressing salons, complete with soft, feminine (usually pink) touches, few if any had barbers.

Lenny completed a barber’s course while still working part-time in sales and started working in Kingsland Nursing Home in Bangor, as both a carer and barber. When he posted some of his pictures and stories online they caught the attention of the Alzheimer’s Society, who suggested that he attend a dementia-friendly course. He duly did, thus officially becoming Lenny the Dementia-Friendly Barber and utilising to great effect his twin skills of caring and grooming – there’s a particular way to cut the hair of people confined to beds and wheelchairs.

Before Covid locked us all down Lenny was visiting well over 50 care homes, as well as hospitals and day care centres, returning every six weeks with his mobile salon, setting up his candy-striped pole, his juke box full of Frank Sinatra and Dean Martin, his old-fashioned posters and paraphernalia, scenting the air with a spritz of cologne and Old Spice aftershave and treating his all-male customers to the full barbering experience.

“Men love getting together with other men and having a bit of a banter”, says Lenny. “Just because someone has dementia it doesn’t mean they have to lose out on things like this, in a sensory environment”.

Lenny’s learnt a lot from people living with dementia, explaining that he meets them, “where they’re at”, slowing himself down and becoming more patient. And he regards it as a privilege to get to know the individuals and their families, sometimes giving head massages and haircuts to men nearing the very end of their lives.

In 2017 Lenny’s inspirational, pioneering work was recognised by the Northern Ireland Alzheimer’s Society when he was honoured for his outstanding contribution at the Dementia Friendly Awards.

For Lenny though, the rewards and support definitely work both ways. “These men are waiting for me and I love looking after them,” he says. “But I don’t think they realise how much they are looking after me; they definitely help me – I’ve found a purpose in looking after them. I just treat them as a friend. Dementia doesn’t even come into it; I just see them for who they are”.

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunes, Acast, Spotify, Google, Podtail or Castbox.

Rosanne Corcoran is a carer – or to use her American word, a caregiver.  She is also a daughter, wife, mother and podcaster.  This week she spoke to me from her home in Philadelphia, USA .   Her dad died when she was 16 and she’s very close to her 92-year-old mum. 

For the past 12 years, since her mum was diagnosed with, first mild cognitive impairment and then Alzheimer’s, Rosanne has been her main carer, and in 2015 her mum moved in with her and her family.  Before she had to give it up, her career was in real estate. 

To put it bluntly, in her own words, she is a full-time, sandwich-generation dementia caregiver and she’s exhausted.    And that was before Covid struck;   before she lost the caregiver who came in for four hours a day so she could run errands;  before her younger daughter’s high school closed. 

For months now Rosanne has barely left the house; when she does she hurries home for fear of bringing the virus back with her.  She doesn’t think her mum Rose, who needs help with all her everyday needs, would survive were she to catch it.

Last November, Rosanne wrote an open letter “To Dementia” for Next Avenue, an influential US website on ageing.  In it she describes how the disease has taken a beautiful, independent, light of a woman and turned her into someone whose world has been shrunken to one room.   

“I am consumed with worry and fear and guilt and sadness and anger over watching my mother slip away, all the while trying to stay involved in my children’s lives,” she writes. 

Yet Rosanne still manages to be upbeat.  “At least my children learn about what’s important in life; at least my mother knows she is loved; at least we have dinner together; at least we can laugh”. 

Like me, she’s found a creative outlet in writing and podcasting.  Each month she writes, records, edits and produces Daughterhood the Podcast on the Whole Care Network: where her guests have ranged from Teepa Snow, one of the world’s leading educators on dementia care to our own Tommy Dunne, a Liverpudlian who was diagnosed with Alzheimer’s at the age of 58.

Speaking to Rosanne about her roles as carer, mother and podcast host was a delight.   She’s warm, honest, knowledgeable and – despite her mum’s sleep patterns ensuring she rarely gets to bed before the sun comes up (the day we spoke it was 3.15am) – fluent and charming.   But why take my word for it?  Tune in to any of the podcast platforms above to hear her fabulous mid-Atlantic voice.