What next?

So, after the end of the study visit, the report writing, the thinking and the reflection-how to put all the learning into practice?

I’m lucky to have two projects  to work on. ‘Meet Me @ The NGC’ is a weekly session for people with dementia and their carers, an opportunity   to come to the National Glass Centre (NGC) for a workshop with glass artists and a little bit of creative writing with myself.

Many of the conversations I’ve had with participants have focussed on ‘work’ . This is more than reminiscence; work is often what defines us. The riverside site of the NGC is also a reminder for many people of the decline in industry on the banks of the River Wear and in the Sunderland area- shipbuilding, mining, rope making. For others, their active roles in working in their community: teaching, caring.

I prefer the riverside as it used to be- watching the ships being launched- plenty of jobs. Now its just a place to walk the dog.’

These conversations were also inspired by the ongoing ‘work’ at the NGC where glass blowing can be observed and the huge installation of over one thousand hanging glass ‘teardrops’  which  often provoked a response of ‘How did they make that?’. 

At the end of the workshops, participants  commented that it was rare chance for socialising and  being creative but also an important opportunity  to return to making something, being productive.

NCG

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Stories from the West Side- Chapter 8

 Paul

 For some time, I’ve wanted to visit Nova Scotia on the east coast of Canada; partly influenced by the beautiful short stories of Alastair Macleod, living on Cape Breton Island. Last year, I met his son, Alexander, also a fine writer, at a writer’s workshop where we compared the history and geography of Northumberland, where I live, and Nova Scotia where he grew up. Due to the complex economic changes, both areas have seen a decline in traditional industries of fishing, coal mining and farming and increase in tourism and property development.   Both on the East Coast.

It seemed an important place to experience as part of my study visit where I wanted to explore older people’s sense of place and belonging in a rural setting. I wanted to investigate the sense of identity which I have found in my work with older people in Newcastle and Northumberland, where place is often central to identity, and personal histories are written in the scrubbed doorsteps or the rope factory or the ship building or the mines. Those structures may be gone but they live on in many older people, not as fond memoirs, but as a real sense of identity.  For those living with dementia, it may be one aspect of identity which is more easily evidenced in creative activities.

It was such a relief to find, via the internet, the Eldertree Project, part of Antigonish Health and Arts (AHA!), based in a small university town two hours from the main city Halifax. As I drove there, across wide expanse of forest and field, I kept thinking ‘This is Scotland in Canada!’   Early migrants from Scotland (Nova Scotia=New Scotland) and Ireland established European settlements with their traditions of music, farming and fishing. Now their cultural legacies are maintained in local communities, alongside references to First Nations Canadians.

I had been invited to a community event at a residential care facility and arrived to a sunny garden,  full of people listening to a local band playing country music. Two members of staff were dancing with residents, glasses of juice passed around.  Before dinner, everyone was called in to watch a film made by AHA! with music and song created with older people,  local children and local musicians. The film reflected the local culture in the present, not just reminiscing about the past.

This was a celebration with a special tea where residents could invite guests to share a meal. I was lucky to be guest of Paul who had dressed for the occasion with blazer, white shirt and tie. As a new resident, he told me of his recent fall and diagnosis of dementia;  significant changes since his lifelong career  as an engineer building trails through the forest for trucks carrying timber. His descriptions were very vivid as he talked about ice skating on the estuary in winter, living at the edge of the water, walking the old trails he had helped to develop. His story and those of other older people are being collected to create a performance piece to celebrate and acknowledge the elders in the community.

Paul had arrived at a point in his life when we was aware of diminishing memory, distressed about having to live separately from his wife who was in a different facility because of her own health difficulties, For him, the minutiae of each day seeming to stretch into an unclear future.  I was struck by the way he dealt with those changes in his life with such dignity and calm, how the celebration event allowed him to be a host again, to enjoy the live music outside.

Estuary near Antigonish

Estuary near Antigonish

Whilst in Antigonish, I had been asked to facilitate a workshop and discussion with the AHA! Group about our shared experiences of using creative writing, collecting words, opinions and memories from older people especially those with dementia.  The workshop included health and art professionals and volunteers working on the project, as well as my host, Anne Simpson (local poet, novelist and essayist) who had a key role in mentoring emerging writers on the project. Discussion ranged across the challenging subject of ethics, the extent to which we censor or select from other peoples stories, what support do we get from arts and health networks nationally or regionally, what is the most appropriate artwork to illuminate the writing, what is truth, whose truth are we representing, what values do we as writers and artists bring to the process.

This discussion reinforced for me that it is important to approach writing with older people with dementia in the same way that I might prepare for any community based workshop with people who have not written before, aiming to make it participative, that people learn from the activities or the readings, that everyone has equal opportunity to be involved and contribute to the cultural life of the community, regardless of memory loss.  The main difference is that I am usually the one holding the pen and doing the actual writing whilst collecting words directly from participants in the dementia workshops.

We talked about dealing with difficult stories where confidentiality around violence or abuse needs to be maintained but the impact can be captured in other details- the wedding ring flung in the drawer, the financial struggle of a single parent. These are universal themes that cut across age groups, dementia diagnosis and individual histories.  This gave us opportunity to reflect on the ageist attitudes which reinforce the cognitive difficulties associated with dementia. No wonder we often hear older people say ‘I don’t want to be a burden.

This discussion was held in a residential care home working along the principles of the Eden Alternative approach, where creative expression and arts activities are part of the daily programme. This was evident with the art work on the walls and atmosphere of inspiration and vitality throughout the building; so different to some silent facilities where residents spend hours dozing in plastic covered chairs. I was reminded again that science now demonstrates that creative expression is as effective as psychotropic drugs in maintaining calm and communication; there is no excuse for this vital approach to be ignored.

How do we capture those times of change, allowing people to express their emotions about major life challenges, moving from independent living to residential care- which eventually becomes end of life care?  A programme of creative activities can become central to care, central to honest communication and freedom of expression.

As I left Antigonish, close to the water and en route to Cape Breton Island, I thought about Paul and his future, the opportunities he might have for returning to the forest, quoting Latin names for plants, smelling the pine, listening to the water moving. I was reminded again and again, that the sense of ‘place’ is so central to our sense of identity, crucial for Paul in celebrating his past as well as his future.

Paul: social host, nature lover, engineer, husband, environmentalist, ice skater, Nova Scotian. 

 

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Stories from the West Side- Chapter 7

Lin

It is a rare event for me to go clothes shopping. However, before my trip, I had purchased a rather trendy, expensive, waterproof coat in anticipation of being a proper, smart city person (instead of my usual dog-walking outfit).  I arrived at the offices of Alzheimer’s Ass in NYC drenched to the underclothes (failed expensive waterproof) at the same time as Lin, a very stylish older woman, who had not a drop of rain about her person.

We had both arrived for the ‘connect2culture’ symposium which involves several New York galleries and museums in a programme of activities for people with dementia and their carers. The symposium showed a video (now on You Tube, Lemonade.ALZ NYC)  made to illustrate the ongoing involvement of the arts in the lives of Lin, wife and carer of Matty, with dementia.  They had always been very active in the cultural life of Manhattan and the connect2 culture programme enabled them to continue. Initially Lin had taken her husband along to participative arts activities, sitting nearby as an observer, but soon she had become involved herself. She began writing poetry, painting and singing for the first time in her life.  The video was filmed partly in their Manhattan apartment and showed them both in evening dress, going out to a concert, continuing their life together in a new way.

At the end of the video, Lin read one of her poems to the symposium. She  was able to talk about her ability to deal with his dementia by using writing but also she had found new ways of thinking, not just being a consumer of the arts but becoming a contributor and creator.  ALZ.NYC  supports the participating  museums in setting up these activities by giving staff training, suggesting best places in the museum for group discussions, identifying points of interest. The impact is enormous; if ever there was an example of a Dementia Friendly Community, this would be one that costs very little and has a huge impact. Of course New York City is famous for its cultural opportunities but even here in the North East there are numerous places which could provide specific openings for people with dementia and their carers–already some do just that e.g. National Glass Centre, Sunderland.

At the other end of a plane journey, in Halifax, Nova Scotia, I met Ardra Cole, Director of Research at Mount Saint Vincent University who uses art as part of the social research process. As a result of her own experience of caring for her mother with Alzheimer’s, she and her colleague had developed several creative projects around the role of carer.  In particular, I loved the public installation which portrayed a woman’s life through underclothes on a washing line: nappies at one end, incontinence pants at the other with all sorts of fashionable undergarments in between. She had also created a small booklet ‘Alphabet of self-care for carers’ which was a simple but instructive and reassuring way to support carers.

A         Adjust your way expectations, life has changed.  Accept offers of help early and often.

B         Believe in yourself.  Be flexible, there are many ways to do things, not just the ways
you’ve always done.

Both these meetings which focused on carers reminded me of the impact of dementia on those around the person with the diagnosis; how lives are upturned and individuals reshaped. But some carers are able to accept the new situation and find positive aspects, with the opportunity for creative activities and personal expression being central to that process.  I learnt that taking care of people with dementia necessarily means involving those who care for them e.g. dementia cafés.

Throughout the final part of my visit I was reminded of the SPARK! Event in Racine where key note speaker Dr Susan McFadden reinforced that we are ALL living with dementia, that the inaccurate language and inappropriate metaphors we use about the ‘epidemic of’ and ‘war on’ of dementia ‘produce an excess disability’ which adds to the challenges for people with the disease; language which reinforces fear and unfriendliness towards people with dementia, excluding them from communities, therefore also excluding their carers as well.

At the ‘connect2culture’ symposium, the key note speaker Dr Warachal Eileen Faison spoke about strategies for communication with people with dementia: don’t ask questions involving memory which people cannot answer, be aware of changes in reasoning and problem solving, plan their dementia- friendly session times to gain maximum benefit for participants.

Lin left the symposium at the New York Chapter of Alzheimer’s Society before lunch, she had to get back as her daily four hours of care support was ending,

If it was the other way round, he would do the same for me’ she tells us. ‘I have to organise a trip to Florida, we’ve been married 52 years, we still love to travel.’

Lin: wife, carer, poet, painter, nurse, cultural consumer, New Yorker

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Stories from the West Side- Chapter 6

Neil

Another session at the Memory Centre in Brooklyn, this time as a guest of Gary Glazner, internationally acclaimed poet working with people with dementia, author of Dementia Arts and founder of the Alzpoetry.blog.

The older people attending the centre reflect the history of people migrating, growing up and working in NYC. Many different ethnic backgrounds, variety of religions and life experiences. It’s a crowded room, about twenty older people with dementia who have arrived at the day centre, looking at bit tired after their journey and change of place.  Gary takes his time as he goes round and shakes the hand of everybody in the group, already knowing some of their names, asking those he doesn’t. Neil, smartly dressed, alert, claps his hands and sings ‘Fly me to the moon.’

 I am introduced to the group as a visitor from England and Gary explains that he is going to read some of the famous English poet, Shakespeare. Wow!  I’ve never tried that! It’s a high energy session as Gary quotes some of the better known lines and people in the group respond, repeat, shout out, and contribute their own words. Neil is still singing, but not Shakespeare, ‘Fly me to the moon.’

We are all involved: myself, a local volunteer, a group of occupational therapy students, Gary leading us through acting out some well know pieces. It is surprising how many people in the group are able to join in, know the lines from Romeo and Juliet, Macbeth, Hamlet. Soundbites which we have all grown up with ’If music be the food of love’ and so on. The ‘call and response’ method is  core to Gary’s approach.

Call and response is an effective technique in reaching people living with dementia….it uses what is known as “echoic memory” … a brief mental echo that is thought to last upwards of about three to four seconds after an auditory stimulus has been heard.” The time span of four seconds is close to the length of a line of poetry in iambic pentameter.’

At first, I had assumed this was cultural difference with the New York exuberance being essential to this practice, but meeting and observing Gary Glazner during the study visit has taught me that this is something that I could use in any UK dementia care setting, with the right preparation and the right material and the right energy.

‘ …when we engage people with call and response, they become more social, more alert.’ Dementia Arts

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Gary asks people to shout out what they think about love, we are going to write a love poem using all the senses, what does it smell like, sound like. People shout out words, ‘red, violets, chocolate, roses, marriage, family.’  Everything gets written down in Gary’s notebook, everybody’s contribution is included, everyone is equally important and the repetition of the song ‘Fly me to the moon’ is not seen as a repetitious distraction.  Gary reads back the poem one line at a time, with a call and response pattern.

The session reinforced for me that people with dementia still have a need for connection, need for communication, ability to create poems for a blog, feel the importance of home, belonging to a place, being acknowledged. The skills required for facilitation can be learned but also require a certain kind of person to be able to ‘fly’ with it.

At the end of the session, Gary asks if anyone in the group has any questions for the visitor from England. I did not expect much of a response as the group looked tired from their morning of love poetry.  There is a silence, then Neil asks me directly

‘Tell us, what are you interested in?’

I explain that I live in a place quite different to NYC, I live quite near the Scottish Border, surrounded by fields. Neil is ready with another question.

‘What d’you think about the Scottish vote? Will Scotland fly solo?’

Although he may not remember what he had for breakfast, Neil knows it is the week of the Scottish referendum on independence.

Neil:  poet, singer, social, political, New Yorker

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