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