Brenda was troubled by shadows in broad daylight. Photo: Getty
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The tragic tale of a holiday never taken

A swift death and antimacassars that turned into faceless people meant that Aubrey and Brenda never got to take the holiday they craved.

A few months earlier, Brenda had been diagnosed with Parkinson’s disease, but the nebulous back pain that prompted the request for a home visit wasn’t a result of that. As I asked more about her symptoms, I became conscious of an air of bewilderment about her. I started to wonder whether depression – common after any significant diagnosis – might be part of the picture.

Throughout the discussion her husband, Aubrey, stood awkwardly off to one side, in a no-man’s-land midway between her chair and the doorway, as though unsure whether to stay in the room or leave it. He made a couple of brief contributions, but in the main he just listened. When I asked Brenda whether she was still enjoying the things she usually loved in life, she turned to him and – somewhat accusingly – commented that they rarely went away any more. I could sense some issue between them but I didn’t know what it was.

Aubrey came to see me in surgery soon afterwards. He’d found a lovely convalescent home, he said, and he wanted to take Brenda there for a six-week break. The thing was, he needed me to complete a health form for them. I had no idea there was such a thing as a convalescent home still in existence – the idea seemed quaint, Victorian. But there it was: on the front of the pamphlet was a line drawing of an old manor house in the Home Counties that now served as a sort of genteel hotel-with-nurses.

Leave it with me, I told him. I was touched by the way he’d responded to Brenda’s complaint about her restricted life. By the way, he said, wincing as he stood up to go, I’ve been suffering with some of that backache, too.

Aubrey’s back pain, in contrast to his wife’s, worried me: new in onset and with no cause, affecting the upper spine, worse when lying down, waking him from sleep. An urgent MRI revealed advanced lung cancer eroding his vertebrae. At some point while waiting for the scan results I did fill in the convalescent home forms for him, but he and Brenda never got to go. Over the next five weeks he declined rapidly, and died peacefully at home.

Their daughter, Jill, rallied round during the crisis, but had to pick up her normal life after Aubrey died. Problems quickly became apparent. Brenda’s meals generally didn’t happen unless prepared for her and supervised, and she frequently forgot to take her Parkinson’s medication, or took the various sets of pills laid out for the day all in one go. Then there were the evening phone calls: Brenda ringing Jill repeatedly, distraught about the faceless people sitting in the chairs in her lounge, or loitering in her hallway.

We arranged emergency respite care while the true picture emerged. Rather than “pure” Parkinson’s disease – which affects the substantia nigra, a region of the brain principally concerned with movement – Brenda was suffering from Lewy body disease. This often presents as Parkinson’s initially, but within months other areas of the brain begin to be affected, producing a pattern of dementia that is quite distinct from more common forms such as Alzheimer’s. The visual cortex is frequently involved, and about three in every four Lewy body sufferers experience marked visual hallucinations. Brenda’s brain was misperceiving the coats on the pegs, and the antimacassars on armchairs, and turning them into grotesque, featureless-faced people that she alone could see.

Although Lewy body disease develops more rapidly than other types of dementia, the degree of difficulty Brenda was experiencing did not come on overnight. When I talked about it with Jill, it made perfect sense of several incidents over the preceding months. It became apparent that Aubrey had been coping with, and covering up, his wife’s symptoms for some time.

Spouses frequently “compensate” for their partner’s dementia for considerable periods without involving professionals. The reasons – to do with denial, fear, shame, loyalty and stoicism – are complex. Not infrequently a dementia diagnosis is apparent only when something happens to destabilise the situation – a hospital admission or, as in this instance, the spouse’s untimely death.

I think back to that home visit, Brenda with her nebulous back pain, Aubrey wavering between her chair and the sitting-room door. I sensed indecision in him. How long had he been coping with her distressing evening hallucinations, organising her meals and medication, keeping the outside world at bay? It must have taken a toll. Was he fearful that she might let slip something that would expose the extent of her problems? Or was he secretly hoping it might happen, a way for him to get help without the guilt of admitting that he needed it?

That six-week break stays in my mind. I remember thinking a convalescent home was a bit over the top; they would have been fine in a normal hotel. Aubrey knew better, though, and I admire him for it. With Brenda’s visual hallucinations and fluctuating confusion, having nurses on hand would have been reassuring. He had organised the perfect holiday, and I only wish they’d got to enjoy it.

This article first appeared in the 14 May 2014 issue of the New Statesman, Why empires fall

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An unmatched font of knowledge

Edinburgh’s global reputation as a knowledge economy is rooted in the performance and international outlook of its four universities.

As sociologist-turned US Senator Daniel Patrick Moynihan recognised when asked how to create a world-class city, a strong academic offering is pivotal to any forward-looking, ambitious city. “Build a university,” he said, “and wait 200 years.” He recognised the long-term return such an investment can deliver; how a renowned academic institution can help attract the world. However, in today’s increasingly globalised higher education sector, world-class universities no longer rely on the world coming to come to them – their outlook is increasingly international.

Boasting four world-class universities, Edinburgh not only attracts and retains students from around the world, but also increasingly exports its own distinctively Scottish brand of academic excellence. In fact, 53.9% of the city’s working age population is educated to degree level.

In the most recent QS World University Rankings, the University of Edinburgh was named as the 21st best university in the world, reflecting its reputation for research and teaching. It’s a fact reflected in the latest UK Research Exercise Framework (REF), conducted in 2014, which judged 96% of its academic departments to be producing world-leading research.

Innovation engine

Measured across the UK, annual Gross Value Added (GVA) by University of Edinburgh start-ups contributes more than £164m to the UK economy. In fact, of 262 companies to emerge from the university since the 1960s, 81% remain active today, employing more than 2,700 staff globally. That performance places the University of Edinburgh ahead of institutions such as MIT in terms of the number of start-ups it generates; an innovation hothouse that underlines why one in four graduates remain in Edinburgh and why blue chip brands such as Amazon, IBM and Microsoft all have R&D facilities in the city.

One such spin out making its mark is PureLiFi, founded by Professor Harald Haas to commercialise his groundbreaking research on data transmission using the visible light spectrum. With data transfer speeds 10,000 times faster than radio waves, LiFi not only enables bandwidths of 1 Gigabit/sec but is also far more secure.

Edinburgh’s universities play a pivotal role in the local economy. Through its core operations, knowledge transfer activities and world-class research the University generated £4.9bn in GVA and 44,500 jobs globally, when accounting for international alumni.

With £1.4bn earmarked for estate development over the next 10 years, the University of Edinburgh remains the city’s largest property developer. Its extensive programme of investment includes the soon-to-open Higgs Centre for Innovation. A partnership with the UK Astronomy Technology Centre, the new centre will open next year and will supply business incubation support for potential big data and space technology applications, enabling start-ups to realise the commercial potential of applied research in subjects such as particle physics.

It’s a story of innovation that is mirrored across Edinburgh’s academic landscape. Each university has carved its own areas of academic excellence and research expertise, such as the University of Edinburgh’s renowned School of Informatics, ranked among the world’s elite institutions for Computer Science. 

The future of energy

Research conducted into the economic impact of Heriot-Watt University demonstrated that it generates £278m in annual GVA for the Scottish economy and directly supports more than 6,000 jobs.

Set in 380-acres of picturesque parkland, Heriot-Watt University incorporates the Edinburgh Research Park, the first science park of its kind in the UK and now home to more than 40 companies.

Consistently ranked in the top 25% of UK universities, Heriot-Watt University enjoys an increasingly international reputation underpinned by a strong track record in research. 82% of the institution’s research is considered world-class (REF) – a fact reflected in a record breaking year for the university, attracting £40.6m in research funding in 2015. With an expanding campus in Dubai and last year’s opening of a £35m campus in Malaysia, Heriot-Watt is now among the UK’s top five universities in terms of international presence and numbers of international students.

"In 2015, Heriot-Watt University was ranked 34th overall in the QS ‘Top 50 under 50’ world rankings." 

Its established strengths in industry-related research will be further boosted with the imminent opening of the £20m Lyell Centre. It will become the Scottish headquarters of the British Geological Survey, and research will focus on global issues such as energy supply, environmental impact and climate change. As well as providing laboratory facilities, the new centre will feature a 50,000 litre climate change research aquarium, the UK Natural Environment Research Council Centre for Doctoral Training (CDT) in Oil and Gas, and the Shell Centre for Exploration Geoscience.

International appeal

An increasingly global outlook, supported by a bold international strategy, is helping to drive Edinburgh Napier University’s growth. The university now has more than 4,500 students studying its overseas programmes, through partnerships with institutions in Hong Kong, Singapore, China, Sri Lanka and India.

Edinburgh Napier has been present in Hong Kong for more than 20 years and its impact grows year-on-year. Already the UK’s largest higher education provider in the territory, more than 1,500 students graduated in 2015 alone.

In terms of world-leading research, Edinburgh Napier continues to make its mark, with the REF judging 54% of its research to be either world-class or internationally excellent in 2014. The assessment singled out particular strengths in Earth Systems and Environmental Sciences, where it was rated the top UK modern university for research impact. Taking into account research, knowledge exchange, as well as student and staff spending, Edinburgh Napier University generates in excess of £201.9m GVA and supports 2,897 jobs in the city economy.

On the south-east side of Edinburgh, Queen Margaret University is Scotland’s first university to have an on-campus Business Gateway, highlighting the emphasis placed on business creation and innovation.

QMU moved up 49 places overall in the 2014 REF, taking it to 80th place in The Times’ rankings for research excellence in the UK. The Framework scored 58% of Queen Margaret’s research as either world-leading or internationally excellent, especially in relation to Speech and Language Sciences, where the University is ranked 2nd in the UK.

In terms of its international appeal, one in five of Queen Margaret’s students now comes from outside the EU, and it is also expanding its overseas programme offer, which already sees courses delivered in Greece, India, Nepal, Saudi Arabia and Singapore.

With 820 years of collective academic excellence to export to the world, Edinburgh enjoys a truly privileged position in the evolving story of academic globalisation and the commercialisation of world-class research and innovation. If he were still around today, Senator Moynihan would no doubt agree – a world-class city indeed.

For further information www.investinedinburgh.com