Dementia Friends

Before the Session:

Me: Nah! I really don’t think I should go to any of the dementia sessions.

Brave Me: Why not?

Me: I have my issues and I’m afraid I’ll freak out.

Brave Me: Wimp! Given everything you’ve been through, you should be able to deal with anything these days. Go! Keep quiet when you’re there and then find a corner afterwards to blub in.

The session was led by Dementia Friends, and they began by asking for words which come to mind when we hear the word ‘Dementia’. Failed memory, confusion, paranoia, losing things and personality changes came out. I thought it strange that nobody mentioned loss and fear.

The leaders gave us the five main messages which Dementia Friends want to get across:

1. Dementia is not a natural part of old age. One in fourteen of over 65s have dementia but some are much younger.
2. Dementia is a disease of the brain. It affects everyone differently. There are over 100 different types of dementia.
3. Dementia is not just about losing memory. It also affects motor skills, sequencing, loss of inhibition, judging distance, perception.
4. It is possible to live well with it.
5. There is more to the person than the dementia.

As a description of dementia, Carole gave us the analogy of a person as a bookcase holding books from every memory of her life, with the most recent memories on the top shelf and her childhood ones at the bottom. As the bookcase begins to rock and topple, the books begin to fall off, those from the top shelf (recent events) dropping first. Imagine that most of the books have disappeared while the person could be living on the shelf containing the 50s.  What would she not know about? Not just microwaves, smart phones and videos. Would she know what a teabag is, or what it’s for? How would she make a cup of tea? Should you make it for her, or does this undermine her sense of independence? Perhaps the real way to help her is to buy tea rather than teabags.

One of the most heartening pieces of information for me, as a great believer in the power of language, was that it is no longer acceptable to refer to ‘dementia sufferers’. They are ‘people with dementia’. This reflects the way in which changing the term ‘rape victims’ to ‘rape survivors’ enlightens the public and gives strength to those who have been raped. It is entirely positive, as was this session. The exercises illustrated how perceptions of dementia vary as widely as the people who have these perceptions.

After the Session:

Other People: Are you ok?

Me: (sniff) Sure. 

Other People: No, you’re not. What happened? Was it bad? 

Me: No, it was bloody good. But I should have listened to myself. There were too many connections. Too many contacts. Too many familiar moments. I shouldn’t have gone. I was right. It was scary. I’ll get some wine and forget about it.

Other People: Not a good idea! 

Me: Tough!

- Joy Pascoe

Links relevant to this diagnosis:

Dementia Friends

Symptoms of Dementia - Alzheimers Disease International

Support - Dementia UK

TWO MAN SHOW // RashDash

There is a crisis in masculinity. Men can no longer be bearded, belching monsters, retreating to their man-caves at the merest whiff of emotion. Women are in charge now, and men now have to stop solving problems with their fists. They have talk to each other. They have to have feelings, damn it. This is the initial premise of Two Man Show – actually a three-woman piece. But, just as the title of the show misleads us as to the gender identities of the performers, the show itself tells us less about what it is to be a 21st century man, and more about what it is to be a woman.
 
Following a quick overview of how the patriarchy has ruined everything, we see women portrayed as goddesses, as muses, on pedestals, as voiceless figurines. We see women acting out the characters of two brothers, struggling to communicate about death and impending fatherhood, jaws and hearts hardened and set against each other.
 
Most of the show involves the two main performers and creators – Helen Goalen and Abbi Greenland – either topless or completely naked. It seems potentially gratuitous, titillating or desensitising. Then as women playing men, standing about in their boxer shorts in the morning, it seems fine. After all, men are allowed to walk around in just their pants, aren’t they?
 
It’s not the only ‘un-ladylike’ behaviour the audience is asked to confront. Women swear. We fight. We fuck. We make our own rules. We rule our own lives now, thank you very much. But does this mean we’re no longer allowed to be feminine? To use our power softly rather than screaming and shouting? Two Man Show speaks to the very heart of identity yet acknowledges that sometimes there are no words to say how we really feel.

- Dr Kat Arney

Two Man Show ran at Summerhall until August 27th - https://tickets.edfringe.com/whats-on/two-man-show

RashDash: http://www.rashdash.co.uk/

Thoughts from RashDash about on-stage nudity and playing men: http://www.rashdash.co.uk/thoughts/two-man-show-week-four-diary/

Time – The Crisis in Masculinity: http://time.com/4339209/masculinity-crisis/

Ms Magazine – Empowering Femininity: http://msmagazine.com/blog/2014/07/28/empowering-femininity/

ZERO DOWN // Angel On The Corner TC

Among the 17 women interviewed or writing first-person about their experience of political activism in Helena Earnshaw and Angharad Penrhyn Jones' invigorating book Here We Stand is Eileen Chubb, founder of the charity and campaign Compassion in Care. She became, much to her own surprise, an activist after working for years in care homes run by Bupa, and discovering widespread abuse of the elderly inhabitants. At the bottom of the homepage of the CiC website is a melancholy dedication to Pat Gifford that reads: “After witnessing the abuse of a loved one in a care home, Pat Gifford was so affected by this experience that she became increasingly afraid of growing older and needing care herself that she took her own life.”

Zero Down is set in a small-town care home in which abuse of the elderly patients is carried out on a daily basis: not by staff but by management, who allow the store cupboard to run out of wet wipes and humans to sit in their own faeces for hours before bothering to send a nurse to them. These are all typical of the routine cost-cutting carried out by an organisation run in the service of profitability and not in accord with basic humanity. Working on zero-hour contracts, the nurses are expected to pass their shift not at bedsides but in a staff room, waiting to be summoned by electronic buzzer to a specific patient, clocking in only as and when they are called. Unsurprisingly, this raises the women's own stress levels and sets them at odds with each other.

Writer Sarah Hehir tells two stories here: the visible one of the working women on stage, and the invisible one of the disintegrating humans trapped in their beds. One of the nurses, Benni, is a single mother of three at the mercy of a neoliberal economy, failing to keep her head above water because the system is constructed for her to drown: sympathy for her contracts each time she spews a racist slur, then expands as she reveals her detailed knowledge of individual patients' tastes, habits and frailties. That kindness is contrasted with the exploitative purpose of Erin, an aspiring journalist reading up on female war reporters as she attempts to make her mark by following the example of Eileen Chubb. The distance between conniving Erin and compassionate Eileen becomes clear, however, when the young woman confesses that changing the soiled nappy of a patient makes her think that euthanasia is a good idea. Her tone creates an ambiguity as to whether she means self-elective.

The picture of decrepitude that Hehir presents has almost nothing appealing about it. It's not just a dramatic construct that Benni is the mother of small children: whether at home or at work, her life is one of changing nappies. But she also describes carrying a male patient to the toilet to spare his feelings of mortification at being so infantilised: an act of generosity that helps him continue to value his life. But that generosity also requires the energy of the young: in Michael Haneke's acutely observed film Amour, an elderly man grows unable to care for his declining wife, and when money can no longer buy what she needs, he, like Erin, begins to see euthanasia as their only option. The question woven through both strands of Zero Down is one of value: how shall we value human existence, and what happens when power and profit are the margins or expression of that value?

- MC

Zero Down is on at 13.00 at Pleasance Courtyard until August 29th (not 18th). Wheelchair Access, Level Access, Hearing Loop - https://tickets.edfringe.com/whats-on/zero-down

Publisher page for Here We Stand: http://www.honno.co.uk/dangos.php?ISBN=9781909983021

Compassion in Care: http://www.compassionincare.com/

What exactly is neoliberalism?: https://www.dissentmagazine.org/blog/booked-3-what-exactly-is-neoliberalism-wendy-brown-undoing-the-demos

Alexander Zeldin discussing Beyond Caring, his play about workers on zero-hours contracts: http://exeuntmagazine.com/features/the-director-as-god-is-bullshit/

Diary of a woman who chose euthanasia: https://www.theguardian.com/lifeandstyle/2008/aug/23/euthanasia.cancer

Two views on Haneke's Amour: https://www.theguardian.com/film/filmblog/2013/feb/28/amour-advert-for-euthanasia and http://www.newyorker.com/culture/culture-desk/surviving-amour

FINDING JOY // Vamos Theatre

Without words, and with masks, Finding Joy explores the impact dementia has on both the person with the disorder, and the people around them. Joy is a widow, living independently. She's visited regularly by her daughter and grandson, who witness her gradual deterioration. It starts with Joy putting strange items in the fridge, and a mix-up between some salad cream and some milk, and ends with her retreating into the past as the present becomes too confusing.

Dementia is a progressive disorder. It affects how the brain works, and in particular the ability to remember, think and reason. According to the Alzheimer’s Society, 850,000 people in the UK suffer from dementia. Worldwide, it's estimated that 135 million people will be living with it by 2050, and there have been warnings that a 'dementia tsunami' is coming. That said, the age-specific risk is thought to be falling, for men at least. The New Scientist reported this April that incidence of dementia in men in the UK has fallen by 41 per cent; there was only a 2.5 per cent drop for women.

There's no cure for dementia, and treatment tends to focus on making people's lives as comfortable and dignified as possible. In Finding Joy, the grandson visits one day bearing the gift of a toy dog. It's a glove puppet, which he brings to comic life to the sheer delight of his grandmother. At moments it seems like Joy thinks it's real dog, at others it's clear she knows it's make believe. Either way, the dog makes her happy and eases her distress.

In the real world, some dementia patients are being treated with PARO, a robot harp seal, and the results seem positive. Researchers at the University of Brighton say PARO reduces agitation and aggression, and promotes social interaction. An article in The Guardian quotes Claire Jepson, an occupational therapist at a specialist assessment unit for dementia patients. She says the robot seal 'allows people to still feel a sense of achievement, a sense of identity. They become the carer instead of the cared for.' Put simply, the robot is enabling some patients to find joy.

- HB

Finding Joy played Assembly Hall at 16:30 until 14 August - https://tickets.edfringe.com/whats-on/finding-joy

'What is dementia?': http://www.ageuk.org.uk/health-wellbeing/conditions-illnesses/dementia/what-is-dementia/

Alzheimer's Society: https://www.alzheimers.org.uk

Alzheimer's Research UK: http://www.alzheimersresearchuk.org

Dementia was one of the challenges nominated for the 2014 Longitude Prize: https://longitudeprize.org/challenge/dementia

'Dementia incidence for over 65s has fallen drastically in UK men': https://www.newscientist.com/article/2084859-dementia-incidence-for-over-65s-has-fallen-drastically-in-uk-men/

University of Brighton's PARO Project: https://www.brighton.ac.uk/healthresearch/research-projects/the-paro-project.aspx

'How Paro the robot seal is being used to help UK dementia patients': https://www.theguardian.com/society/2014/jul/08/paro-robot-seal-dementia-patients-nhs-japan

'PARO Therapeutic Robot': http://www.parorobots.com

Magic Me, UK-based intergenerational arts organisation who run arts programmes with residential care homes, inc. people with dementia: http://magicme.co.uk

DELAY DETACH // Sonder Theatre

“Delay, distract, depersonalise, detach” is advice on how to communicate during an intense and escalating conversation with someone who has borderline personality disorder. It is an effective tool that Sophie has found online in this two-hander about a pair of friends from aged 5 to aged 70. At least, it is effective until the point at which Caitlin discovers what Sophie has been doing and resents the way she has been ‘handled’.

The discovery is yet another bump in the course of their relationship. Most of the bumps they encounter are ostensibly consequences of Caitlin’s mood disorder - and yet both of them have issues, which are not too well defined and so save the play from being about specific psychological conditions. For most of the narrative, Caitlin is in need of attention and support, so when an ageing Sophie starts to show symptoms of dementia, their roles get reversed. There aren’t many firm conclusions to be drawn from this story, except that friendships have serendipitous origins and unexpected turns, and that most of us depend on our friends to get by.

- MR

Delay Detach is on at 19.40 at Greenside @ Infirmary Street until August 20th (not 14th) - https://tickets.edfringe.com/whats-on/delay-detach

Mind on Borderline Personality Disorder: http://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/#.V63ygtArKUs

Advice for friends and family of people with BPD: http://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/for-friends-and-family/

Friendship and mental health: https://www.mentalhealth.org.uk/a-to-z/f/friendship-and-mental-health

 An example of delay, distract, depersonalize, detach: http://www.bpdcentral.com/blog/?Tips-for-Communicating-with-Someone-With-Borderline-Disorder-8

The Alzheimer’s Society on dementia: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200360

ADLER & GIBB // Tim Crouch and the Royal Court Theatre

Tim Crouch’s play Adler & Gibb looks centrally at society’s obsession with the story behind the story, showing something between an artist’s journey to understand her character and an invasive, even violent, emotional grave robbery. An actor, Louise, and her acting coach have come to the Grey-Gardens-inspired home of famed and reclusive artists Adler and Gibb, only to find the circumstances of their reclusion to be different then suspected. Louise is relentless – reminiscent of the portrayal of Capote in Miller’s 2006 film, waiting impatiently for his subject’s death to finish In Cold Blood – and a clear archetype for our obsession with celebrities (even hip, arty, off-kilter celebrities) and the expectations for all people to fully explain their comings and goings to just about everyone.

In his classic essay ‘The Death of the Author’ (1967), Barthes wrote about the problems inherent in allowing a writer’s autobiography to dictate how a piece of work is received by its audience. Such a practice exists today – we retrospectively diagnose Vincent Van Gogh or Chopin with any sort of mental health disorder, see Abraham Lincoln’s homosexuality in his policy decisions, we reread all of David Bowie’s final album as, exclusively, an extended pre-death ritual. Although such a practice might normalize different experiences through history – thus making new role models for us – there is also a danger in the disempowering idea that certain illnesses, lives, problems and struggles automatically lead to any number of specific outcomes. This is put into sharp relief in Adler & Gibb when Louise’s presumptions about the lives of her role models are discovered as wildly inaccurate.

 *Spoiler Alert. The following contains a spoiler for those yet to see the show, but the following is The Sick of the Fringe part*

When Louise realizes that her hero was not in fact in an abusive, reclusive relationship and, instead, someone slowly dying (perhaps of early-onset dementia, it’s not quite clear), the play resonates with the recent – and unexpected – deaths of David Bowie, Alan Rickman, Victoria Wood. But it is not only celebrities who sometimes crave privacy after the diagnosis of an illness; society’s inability to deal with bereavement, disability and difference in public space may make the withdrawal from public life by those dealing with illness themselves even more justified. The view that illness is something that one should be ashamed of, or the view that illness is something which burdens others, is individualistic and, in fact, ableist in its construction. While we don’t need to force Adler to share her illness with the public, we wish she would have known that we would support her however she needed. But then, of course, society has to do that work of not being ableist dicks…. And this might be a long time coming.  (BL)

Adler & Gibb, by Tim Crouch, 3-27 August (not 8, 15, 22), Summerhall, BSL interpreted shows available - https://tickets.edfringe.com/whats-on/adler-gibb

In Theory – ‘The Death of the Author’ - https://www.theguardian.com/books/booksblog/2010/jan/13/death-of-the-author

Dr. Richard Kogan – Rachmaninoff and His Psychiatry - https://www.youtube.com/watch?v=pM097N2lNEI

On Capote and In Cold Blood - http://ocbookshoppe.com/blog/the-legacy-of-truman-capote/

David Bowie’s Death Is A Reminder of the Sanctity of a Private Life - http://blogs.spectator.co.uk/2016/01/david-bowies-dignified-death-is-a-reminder-of-the-sanctity-of-private-life/

RSA Animates: Barbara Ehrenreich’s Smile or Die - https://www.youtube.com/watch?v=u5um8QWWRvo