Her husband, Bernard, saw she hadn't moved for 11 minutes and knew something was wrong. That’s because Gill, 73, who has vascular dementia, carries a GPS device the size of a pager that enables him to track her movements online. Alarmed, he went out and found her stuck in a muddy field near their home in Chichester, England. She had slipped while walking her cocker spaniel Oliver.
“Without the locator, I wouldn't have known where to look,” especially as Gill had strayed from her normal route, Bernard Stoneham, 69, said in an interview.
At least 35.6 million people have dementia, with Alzheimer’s disease and vascular dementia the most common forms, according to the World Health Organization. About 40 percent of them get lost, and half of those who are missing for more than 24 hours die or are seriously injured, according to studies.
That means GPS systems like the one used by the Stonehams are increasingly in demand. Dementia care costs about $600 billion a year worldwide and is projected to rise to $1.1 trillion by 2030, according to Alzheimer’s Disease International. In high-income countries, the non-medical costs - - paid social care in homes and facilities and unpaid care by family members -- account for 85 percent of the total.
Chichester, a town known for its Roman past and medieval cathedral, is part of a growing movement to use GPS devices that promise dementia patients more freedom and their caregivers less anxiety. The spread of the technology across Europe and in the U.S. is drawing concern from advocates for the elderly, who say GPS tracking shouldn't become a substitute for quality care.
The MindMe GPS devices, which can locate a carrier’s whereabouts every four minutes, are connected to Careline, a round-the-clock community call center that can liaise with local police and fire departments.
MindMe, developed by entrepreneur Adrian Wolf, costs 125 pounds ($200), with the 24/7 response service costing an additional 14.50 pounds a month. It’s being used in several cities around the U.K. including Chichester, as well as in Finland and the Netherlands, Wolf said. Care centers in Italy and Switzerland may adopt it as well, he said.
“We are looking to expand throughout Europe and the U.S. as quickly as possible because we know there is a huge demand for the dementia locator,” Wolf said in an interview.
A newer version of MindMe enables patients to push a large round button to talk to a Careline operator through the device, helping seniors who don’t use mobile phones or who become too panicked to dial emergency numbers, said Brenda Jackson, manager of Careline. It can also send text message alerts to relatives or carers if a patient moves beyond a fixed distance.
Norman McNamara, who has lived with dementia for six years, said he would sign up for a GPS device “in a heartbeat,” given his fear of dying from malnutrition or dehydration if he gets lost, even with the round-the-clock care provided by his wife Elaine. He said he feels so strongly about the technology he is helping to develop a competing GPS program to be unveiled Oct. 20, he said.
“Not only will GPS give me peace of mind, it could quite possibly extend my life,” McNamara said in an interview in London. “I want to go on holiday without worrying about how I will be; I want to be able to walk into town on my own, or catch a bus, a taxi, anything where I don’t have to have Elaine giving up all her time.”
Caregivers and patients shouldn't rely too much on the devices, which could be abused, advocates for the elderly say.
“We are concerned this new technology would be used to replace human care,” said Neil Duncan-Jordan, spokesman for the U.K.’s National Pensioners Convention.
That’s particularly worrisome when the state of care for retirees is already “appalling,” he said. Several local governments have suffered budget cuts, resulting in employment of poorly trained low-paid workers, and almost 1 million retirees who need some kind of care are denied any help at all, according to the convention.
Gill Stoneham of Chichester had been attending a memory clinic until about four years ago, when the program ended because of budget cuts, Bernard Stoneham said. The local Rotary Club is trying to pick up the slack by organizing monthly events such as cathedral tours and cream teas, he said.
“We’re quite fortunate to have a forward-thinking council, but there’s a huge gap in support services,” he said.
Consent to use the technology is also an issue, according to Duncan-Jordan. Some local authorities require the patient’s consent, while others will only ask for the consent of relatives with power of attorney, he said.
“The rights of individuals are not properly regulated in this respect,” he said.
In the U.S., the Alzheimer’s Association provides a GPS tracking service through a dedicated device similar to MindMe, a mobile phone, or a device installed on a car. More people may be interested in something that resembles a watch, said Beth Kallmyer, vice president of constituent services at the association.
“With a pocket device, you can set that down and forget it,” Kallmyer said.
GPS devices are diverting attention away from the key goal of good dementia care -- to interpret and respond to what is driving the wandering, said Desmond O’Neill, professor of geriatric medicine at Trinity College in Dublin.
“Wandering is not a disease but a form of communication,” O’Neill wrote in the British Medical Journal.
People with dementia may walk or wander as a response to stress and anxiety, to relieve boredom or pain, because they are confused about the time, or are searching for the past, among a variety of reasons, according to the Alzheimer’s Society.
While McNamara, the dementia patient and founder of the Torbay Dementia Action Alliance in Devon, would rather not wander, he said it is a reality that he has to live with.
“These GPS systems will save lives,” McNamara said. “We have the technology; why not use it?”