Inside a dementia ward

My mother-in-law Nancy, who has Alzheimer’s, lives in a dementia unit which forms one wing of a residential care home in the north of Scotland. It’s a fairly homely place, with carpets and soft furnishings, prints and pine furniture, but to access it visitors must pass through a locked door. It’s locked because people with dementia wander obsessively and would walk down the middle of the road, as Nancy has been known to.
Photograph: Maja Daniels/Picturetank

The unit is a mirror image of the other part of the home, but through its doors lies a different world entirely. As the slow fire of dementia makes its destructive progress through a brain, the ability is lost, pro­gress­ively, to remember, decide, reason, imagine. The tragedy of it is that the ability to feel is not affected in the same way, so emotions can run high.
Photograph: Maja Daniels/Picturetank

I think that Nancy has a better life than the people pictured in this dementia ward. That is to say, the obvious aesthetic conditions are better than this world of grey paint, ugliness and hard surfaces. The tiled and shiny floor pictured here is about giving the staff an easier life, not the residents. It’s easy to connect the evident distress of some of these people with the prison-like austerity of their surroundings.
Photograph: Maja Daniels/Picturetank

The effects of dementia on a person’s mind have as many shades of grey as this decor. Having wrestled for a long time with the question of whether or not Nancy should be in care, I know from experience that it’s supremely difficult to draw a line and say, “Yes, today is the day: we’ve arrived.”
Photograph: Maja Daniels/Picturetank

Some of these residents, admitted too early in their disease to settle, understand what has happened to them, and having tried to force the door open, will know there is no escape. Others are anxious and afraid in ways that pay no heed to aesthetics. The best that can be hoped for in this situation is that a person has passed beyond understanding and feels benign about their new life. That’s what we call “coping”.
Photograph: Maja Daniels/Picturetank

We tried to keep Nancy out of residential care. But the fact is that, putting aesthetics aside, she lived in the world represented by these photo­graphs even when she and her husband Morris lived with my husband and me and our three children, in a beautiful old house by the sea, with cliff and beach and island views from every window. The loveliness of the environment very quickly became irrelevant to her.
Photograph: Maja Daniels/Picturetank

I recognise Nancy in these photographs. She has stood staring at the intersection of two walls, apparently blank, trance-like, all thought processes appearing to have gone into a temporary dormancy. She has wandered about holding her skirt hem up, because it felt comfortingly soft in her hand and because it felt purposeful (the exposure of leg was inadvertent). When we switched from skirts to trousers, she’d bunch up her waistband instead.
Photograph: Maja Daniels/Picturetank

She has sat for hours with her head in her hands, whispering to herself, the same disjointed sentences over and over. She has spent whole afternoons banging on locked doors and working at their handles, her packed bag at her feet. She has looked for hours out of windows, waiting for her father to come, convinced she is a small girl. She has talked to herself in a mirror and described the woman there as her only friend, inviting her in to tea through “the door” and being disappointed that she didn’t come.
Photograph: Maja Daniels/Picturetank

She has packed her bags and waited patiently to be picked up and taken “home”, not to the house where she lived with us, but to the deep past. We looked after her for two years until it became obvious that family life was hindering, not helping. It came to a point when the context we provided – one that we’d naively thought would be comforting – became the greatest source of her unhappiness: the constant striving to make sense of it, resisting the facts, insisting the things people told her (that she was 80, that she was a grandmother, that she was retired, that she had married, that the old man sitting next to her was her husband) couldn’t be true.
Photograph: Maja Daniels/Picturetank

Out of confusion, anger springs; and out of fear, anguished and desperate hostility. When the lashing out began and children were slapped, and there was nothing but misery all day, that was when we had to call a halt to the arrangement. The fact is that she’s been noticeably happier in an institution, where she can invent her own reality from minute to minute and nobody challenges her as Morris used to, unable to prevent himself.
Photograph: Maja Daniels/Picturetank

I don’t know if we would have delivered Nancy to the austere world pictured here. We may not have had any choice, in the end, if this was all that had been available, as of course used to be the case, when geriatric wards were the norm.
Photograph: Maja Daniels/Picturetank

In a way, the soft furnishings of the dementia unit are a confidence trick we’re happy to play along with, as if chain store chandeliers and chintz were an indicator of contentment. It isn’t their surround­ings that the people pictured here are contending with, by and large, but their own inner landscape.
Photograph: Maja Daniels/Picturetank

Presently there’s little in the way of a convincing halfway house between the hopelessness of a dementia unit like this and the richly sociable, stimulated life we would wish for ourselves at 80: still independent, pursuing hobbies, travelling the world. There is, though, more creative thinking going on about how to enhance the lives of those not only dying of a dementing illness but, more importantly, living with it.
Photograph: Maja Daniels/Picturetank

Art and music therapies have proven effective: there are many recorded instances of people unable any longer to string a sentence together in conversation singing wartime songs, or proving word perfect in their knowledge of the Beatles songbook; there is persuasive film of people painting, and beginning to smile and talk, often after a long silence. These are activities that dig deep, beyond brain damage and into surviving parts of the mind.
Photograph: Maja Daniels/Picturetank

Am I alone in being reminded by these photographs of a nursery – or, even more poignantly, an orphanage – in which children are locked in a room without any toys?
Photograph: Maja Daniels/Picturetank

The damage to the door around the lock as people have tried repeatedly to break out: that’s a devastating image. No one would suggest that people with dementia are like children. Indeed, that’s the point: these are people who’ve raised children and worked at jobs, run households and offices and farms. In their minds, many of them still do.
Photograph: Maja Daniels/Picturetank

They need things to give shape to life and people to guide them. The shopping list is an easy one to draw up: purpose-built dementia residences, more like hotels than hospitals; art and music therapy on tap; a dedicated and imaginative staff who take pleasure in lighting up the inner darkness of dementia a little; a network of these residences, one in every vicinity.
Photograph: Maja Daniels/Picturetank

Needless to say, these are not popular words to direct at a government wrestling with debt. The spend would be gigantic. But at least 750,000 people in Britain have some form of dementia; 60% of these have Alzheimer’s, and the figure’s near doubling every 20 years. What is the price we pay for not spending?

Andrea Gillies is the author of Keeper: Living With Nancy – A Journey Into Alzheimer’s, published by Short Books at £7.99. It won the 2009 Wellcome Book Prize, and the 2010 George Orwell Book Prize.
Photograph: Maja Daniels/Picturetank