Who is the prime minister of Britain? It was a seemingly innocent question put to Iris Murdoch, played by Dame Judi Dench, halfway through the film of the award-winning author’s life. But the scene from Iris could have been played out by any one of the people with dementia I visit each day. They have all sat through the MMSE (mini mental state examination), often accompanied by a relative, as a doctor assesses how far the condition has progressed.
Murdoch’s visit to a specialist is one of many moments in the film that captures the experience of people with dementia and their carers. As an outreach worker for the Alzheimer’s Society, I have seen how seemingly trivial questions can hold such significance for people who sit the test.
When Iris was released in 2001 my own mother was in the late stages of Alzheimer’s disease. Back then I did not feel I could sit through a film about the disease and even two years later Dench’s stunning performance brought back vivid memories of my own mother’s decline.
Carers of people with dementia travel on a rollercoaster of emotions when a loved one is first diagnosed. This can begin with complete denial in the earliest stages and the desire to shield the person from situations that might expose their forgetfulness or memory loss. Murdoch’s husband, John Bayley, played by Jim Broadbent, displays this to brilliant effect. After this comes his anger at becoming a full-time carer, distress at watching a loved one change beyond recognition and then guilt as he realises he cannot support her alone.
But along with showing the most distressing symptoms of Alzheimer’s disease, Iris explores the person behind the diagnosis. Kate Winslet plays Murdoch as a young woman. She is depicted as a passionate character with complete control of her life. There are 700,000 people living with dementia in the UK and millions more who will know someone who is living with the condition. A crucial part of supporting those affected is recognising the contributions they have made to society before the onset of dementia.
The film shows Iris as a young, vibrant woman – set in contrast with the older author. Her relationship with her husband changes with the onset of Alzheimer’s disease, triggering a complete role reversal in the marriage. It is a reality millions of carers have to accept.
There will be those who watch Iris without any knowledge of dementia. But those who want to learn more about a famous writer should leave with a better understanding of a devastating condition, which will affect more than one million people in the UK within 20 years.
Dementia is a progressive condition, with the time between diagnosis and the terminal stages taking between four and 12 years. It is a challenge for any director to recreate all this in 90 minutes of cinema. One recent film attempting to do this is Away From Her starring Julie Christie, who was nominated for a Best Actress Oscar for her portrayal. Christie stars as Fiona, who insists on going into care as her memory starts to deteriorate rather than stay at home with Grant, her husband of 40 years, played by Gordon Pinsent.
She is determined to deal with the disease on her own terms, while her husband struggles to accept the unexpected changes in their lives. The decision to move into a care home is a difficult one, which can take months even before you start the search for somewhere suitable. People with dementia and their carers whom I meet will typically have to look at three or four care homes before choosing. After this they have to negotiate the financial hurdles involved in meeting the costs of the care.
In Away From Her Fiona’s husband looks for a care home at his wife’s request. Grant visits just one care home and his wife moves in. They spend a final intimate moment together before he is told not to return for a month to allow his wife time to settle. By the time Grant comes back Fiona has little memory of him or their marriage.
Away From Her is a uniquely personal depiction of dementia. Christie’s powerful portrayal of a person with Alzheimer’s disease has earned her numerous film awards and nominations. These will play a powerful role in raising awareness of Alzheimer’s disease and dementia and generating debate about the difficult decisions families face every day.
Meanwhile, BBC Radio 4 soap The Archers has been running a storyline about Alzheimer’s disease and dementia for more than a year. It centres on businessman Jack Woolley who has been forced to surrender numerous enterprises as he and his wife Peggy try to manage the impact of his dementia. In The Archers, as in the experiences of people with dementia and their carers whom I speak to, the first symptoms of the condition are often dismissed as the harmless signs of ageing.
In an early episode, Jack’s granddaughter Alice arrives to collect jumble for a local sale and he struggles to part with the items. Months later, his wife begins to realise she needs more support to manage with her husband’s changing behaviour.
Unlike the big screen, The Archers plays out in real time the reality of the stepped progression into dementia. It shows how it is the build-up of small, seemingly innocent incidents which eventually prompts someone to visit their GP.
Listening to Jack and Peggy, I was reminded of the moment I realised my own mother might be living with dementia. She went from calling me almost daily to occasionally. But it took 18 months and the added concerns of my father before we started to consider it might be something more serious.
On average it takes nearly three years for someone to get an official diagnosis of dementia in the UK. The most popular soap opera can never cover all the issues facing those living with the condition. Nor can 90 minutes of fiction illustrate the big steps we need to take to ensure the best possible support for those affected. But if we want to ultimately defeat dementia, a condition that costs the UK £17bn every year, then it is vital to raise awareness.
Alzheimer’s disease and dementia are hugely isolating. Any film that gets us talking about how we can better support those affected and encourages people to recognise the symptoms is a vital tool in the fight against dementia.
Anita Campbell is an outreach worker for the Alzheimer’s Society. She visits people with dementia and their carers, providing support and advice about services along with information about the condition. Her mother died from Alzheimer’s disease in 2006.
This article appeared in the 6 March issue under the headline “Dementia and the screen test”