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Documentary 

'Inside New Zealand'   STOLEN MEMORIES

A one hour documentary about younger people with Alzheimer’s Disease was shown on TV 3, Thursday 2nd May 2003 at 8:30pm.  The documentary was produced by Greenstone Pictures, Producer/researcher: Rachel Stace and Director/camera operator: Rebecca Mellor.  The Press Release for the production was as follows.  Our thanks to Greenstone Productions for the Press Release, and needless to say, thank you to the people who have shared their lives, and helped us to understand and increase our awareness of Alzheimers Disease.

Press Release - Courtesy of Greenstone Pictures 

As we get older and have trouble remembering a name, there’s that nagging doubt, "Have I got Alzheimer’s?’

Alzheimer’s is a progressive disease which robs people of their memory, their personality, even their ability to recognise the people who love and care for them. It’s not reversible, there’s no cure and no known cause.

There are 38,000 people in New Zealand with dementia – most with Alzheimer’s disease. Drugs may slow the disease’s progression but ultimately, Alzheimer’s is fatal. It will kill approximately 2000 New Zealanders this year (the fourth major cause of death after heart disease, cancer and strokes). (Globally Alzheimer’s affects an estimated 20 million people, 4 million in the US alone, with figures expected to triple by 2050 as the world’s population ages).

Although most of us associate Alzheimer’s with old people, the disease can in fact affect people as young as thirty.

Stolen Memories is an hour-long Greenstone Pictures documentary following ten months in the lives of three younger people newly diagnosed with Alzheimer’s Disease. All the people in this documentary are in their fifties, all married with children, and all struggling to come to terms with a disease that will take a devastating toll.

Roger Keeling is a recently-retired naval captain, an articulate sociable man who has traveled the world, supervised crew, and given speeches at high-ranking naval functions. But at age fifty seven, after showing signs of depression and confusion, Roger is given the shock diagnosis of Alzheimer’s Disease.

Soon afterwards, Greenstone Pictures’ producer Rachel Stace was contacted by the manager of Alzheimer’s Counties Manukau, who suggested Roger for this documentary. Director Rebecca Mellor then followed Roger and his wife Chris for ten months to record the impact of the early stages of Roger’s illness. It was a journey into the unknown for everyone.

"Generally at the beginning of filming, I have a good idea of what I hope to film and the overall structure of the programme, " says Rebecca. "Stolen Memories, however, was different. All we knew was that the pattern of the disease in the first year after diagnosis was unpredictable."

At the start, Rebecca wanted to make sure Roger knew what filming would entail ("basically me hanging around for a year and asking him personal questions") and that he was sure he wanted to be involved.

"I asked him on several occasions (as did Chris) and he always said he thought it was important that people see what was happening to him so we could dispel the public perception of Alzheimer’s as an ‘old people’s disease’."

Rebecca found a small incident at the start of filming particularly poignant.

"Roger had great difficulty signing the date on his consent form and eventually settled on 1001. He was clearly a strong and once extremely capable man and was embarrassed by his difficulty. I wondered then if I had the emotional courage to follow him on his journey over the next year. "

Roger’s most noticeable early symptom was his inability to find the right words when speaking. Soon, however, other everyday tasks were affected such as writing letters, talking on the phone, and using the computer.

The documentary shows Roger becoming increasingly isolated and dependent on Chris as his ability to communicate disappears. Chris is still working fulltime and worries about Roger being home alone all day. But she soon discovers there are few facilities for young Alzheimer’s sufferers.

"Chris is a very intelligent woman who was struggling to find help for her husband amid a support network designed primarily for elderly people," says Rebecca. "Although she was throwing her energies into resolving the practicalities and logistical problems thrown up by the disease, she was also trying to find the time and strength to deal with the thought of losing the man she loved."

Chris never imagined she would spend her golden years caring for a partner with Alzheimer’s and was looking forward to a retirement of travel and togetherness. Instead, as Roger deteriorates, she sees the loss of her future dreams and the gradual disappearance of the man she loves. It is something she has to face alone as the children have left home and her only close family support comes from her elderly parents.

Since filming was to take place over such a long period of time, it was important for the production team to be as unobtrusive as possible. Apart from the initial interviews and some additional footage, Rebecca filmed most of the programme on a small digital camera.

"I eventually blended into the wallpaper and the fact I was always carting around this camera soon seemed to be almost incidental to everyone," she says.

Over the months of filming, she formed a good relationship with Roger who was "incredibly trusting" with the things he told her on camera.

"He is aware of what he has lost and continues to lose, and it frustrates and saddens him. He wants to protect Chris from the sadness that comes with the disease but at the same time retains enough comprehension to know that he is no longer able to shield her or help her in practical ways, saying ‘I want to take some of the burden off, but it just doesn’t work anymore’."

It wasn’t until Rebecca started editing the programme that she realised how much Roger’s abilities had deteriorated since the beginning of filming.

"Despite this, he does have many moments of utter clarity and would sometimes tell me off for asking questions he had answered weeks before. He never forgot who I was or why I was there but his disease did occasionally throw up some technical challenges like the time he forgot he was wearing a radio microphone and disconnected the ‘annoying little wire’, leaving me checking batteries and equipment for some time before discovering the problem."

In Tauranga, Michael Reid is 54 and the father of three young children. When we first meet him, he and wife Mary are unsure what is wrong with him but are anxious to get a diagnosis to explain his odd behaviour and changing personality. Doctors have raised the possibility that he may be suffering from the early stages of Alzheimer’s but Michael is adamant he doesn’t have the disease.

Unable to work for the past eight months, Michael is at home full-time. Meanwhile Mary is working on commission, struggling to support them all financially while also helping the children come to terms with the changes in their Dad and find some answers about Michael’s health.

We follow Michael, Mary and their three children as Michael has a brain scan to see whether it confirms his doctor’s suspicions and later, as he and his family learn the truth about his condition.

Former nurse, 58-year-old Patricia Hollis from Wellington, knows what lies in store for her. Her Alzheimer’s diagnosis came a year ago, after months of tests, during which time, she also had a breast cancer scare. Patricia now says she would prefer to have cancer than Alzheimer’s because at least there is some treatment for cancer. She also believes her friends’ attitude was far more positive when they thought of her as a cancer patient rather than an Alzheimer’s sufferer.

Patricia and husband Jim recently celebrated their fortieth wedding anniversary. They have five adult children and four grandchildren, all of whom live only minutes from their parents and have rallied to help support their Mum.

As Patricia contemplates her future and her increasing inability to cope with the challenges of daily life, her husband and children talk frankly about what it is like to lose a loved one little by little and what they envisage for the months ahead.

"Patricia had always been one of those people who told her kids ‘If I ever start losing my mind, just shoot me’," says Rebecca Mellor. "It’s a common cry, usually said in jest. But of course, when the situation arises, it’s far more complicated. When do you decide that someone is no longer able to live at home, no longer able to think for themselves, no longer able to experience pleasure?"

Doctors and specialists know that Alzheimer’s starts in the hippocampus, the area of the brain responsible for memories but, as more brain cells die, its progression can be different for each sufferer. There is no way to determine how quickly it will progress and which areas of the brain will be affected along the way.

While Roger suffers tremendous frustrations with his speech and increasing difficulties grasping concepts, Patricia’s symptoms initially manifest as problems with her sight. Although there is nothing wrong with her eyes, her brain cannot process what she sees, so she has difficulty recognising familiar objects or choosing a matching pair of shoes to wear.

Michael’s symptoms are harder to pinpoint although his family recognise he is not the same person they used to know. His personality has subtly changed and he is not able to cope with everyday tasks in the same way. The element of genetic pre-disposition is strong in some families and Michael Reid’s three young children are worried about the possibility of developing Alzheimer’s themselves in the future.

"No one knows how long Roger, Michael and Patricia will be able to retain the lucidity and abilities they currently have," says Rebecca. "While their families are grateful to have time with their loved one, the prospect of losing that person, long before they actually die, is frightening and awful."

EXTRA NOTES ON ALZHEIMER’S DISEASE FROM THE DIRECTOR

The meetings I had with Professor Richard Faull of the Auckland Neurological Foundation Human Brain Bank (which leads the way in Alzheimer’s research) and Dr Phil Wood of the North Shore Hospital Memory Clinic were fascinating. They caused me to read everything there was to read on the brain in the Auckland Library just to keep up with the most fundamental aspects of its physiology.

I was amazed to learn that cell death in Alzheimer’s can ultimately extend to the brain stem and cause death. I had subconsciously thought of Alzheimer’s as a chronic memory disease but it truly is an all-encompassing brain disease that just happens to start in the memory region of the brain.

The news on the research front is encouraging, however. It was only a couple of years ago that researchers confirmed the existence of stem cells (embryonic cells which can produce new cells) in the adult brain. This has opened up research possibilities tremendously and researchers the world over are feeling cautiously optimistic.

I asked the medical specialists whether they did anything differently in their daily lives, thanks to their knowledge of Alzheimer’s. Did they wear aluminium-free deodorant or take truck-loads of Vitamin E supplements for example? They all agreed that the dictum ‘use it or lose it’ was highly applicable as studies have shown that keeping the brain active can stave off the symptoms of Alzheimer’s.

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