The steps of the lost

The steps of the lost

  • Every year in Spain around 50 elderly Alzheimer's sufferers die after wandering off, becoming disorientated and suffering a blow or fall. A geolocator which costs arounds 50 euros could save them

Paqui, aged 74, was last seen in the Plaza del Lavadero in Salobreña at 1pm on Saturday. “It's really difficult, searching for her. She tends to wander off and she has a six-hour start on us,” said the head of the Civil Protection service in this town in Granada province. About 40 volunteers and police officers were combing the area. The search finally ended at 10am on Monday, when a Guardia Civil patrol found her body on some rocks under the cliffs, a 40-minute walk from the town.

Paqui's story is a tragedy which is repeated about every six days in Spain: an elderly person with early dementia goes out into the street, wanders around aimlessly and is then lost forever. Specialist associations say that of all the cases of people who disappear as if the earth had swallowed them up, these are the easiest to prevent: a geolocator which costs between 50 and 100 euros would sound the alarm immediately if they left their normal environment.

“It makes me feel so helpless, because they don't go to the other side of Spain: they're right here, in a radius of three kilometres from their homes. These are deaths which could have been prevented,” says Joaquín Amills, the president of SOS Desaparecidos.

Why do Alzheimer's sufferers get lost? Cases such as that of Paqui sometimes occur when the patient has not yet been diagnosed with this neurodegenerative illness, or when it has been diagnosed but the patient is not aware of their cerebral deterioration and still seems independent enough to be able to go out and follow their normal routines without constant supervision.

Cristóbal Carnero, the head of Cognitive Neurology at the Virgen de las Nieves hospital in Granada, says that problems in identifying places and orienting themselves are early symptoms of this form of dementia. “There can also be temporary disorientation”, says Cheles Cantabrana, president of the Spanish Alzheimer's Confederation (Ceafa). “They might go to the hairdresser on a Sunday, or head off to work without remembering that they don't work any more,” she explains.

Other symptoms often occur before this disorientation, such as not being able to remember normal words, forgetting an appointment, forgetting where they have put an everyday item, repeating the same question or losing keys.

“Unfortunately the families tolerate a loss of memory, and that's a cultural error. They say 'it's normal, he's 80, it's due to age',” says Dr Carnero. But when an elderly person is brought home by a neighbour or the police, because they have been found wandering in the street, families do tend to take it more seriously. Sometimes it is an incident like this which makes them decide to consult a specialist. Many relatives recall that there have been a series of small incidents, although they have not had such a dramatic conclusion.

“It isn't just that these people don't recognise the places they pass through,” says Dr Carnero. “It's that they do not have the resources to resolve problems themselves; they have little initiative, don't know how to ask for help so they don't ask. Or they don't know what to ask, because they have forgotten where they live. If they go the wrong way, their situation becomes even worse.” Every step could be leading them towards their death.

A home from the past

A tendency to wander about is a typical sign of Alzheimer's and it also appears in more advanced stages. “Some patients have recurring and obsessive ideas. They don't recognise the house in which they live and they go out to look for 'their' home, which is nearly always somewhere they have lived in the past or may even be their childhood home,” explains Guillermo García Ribas, the head of the Cognitive Deterioration Unit at the Ramón y Cajal hospital in Madrid. Sometimes they have negative feelings towards those who look after them and feel an urgent need to escape.

The situation is aggravated when the patients live in outlying districts of towns or cities, or in villages, and they wander off into the countryside where solitude, nightfall and anxiety make the problem worse. Death can occur through blows or falling into ditches or down precipices, hypothermia, heat stroke, starvation or lack of medication which they need to take.

In Spain there is no official register of disappearances, and therefore nobody knows how many people who disappear suffer from dementia. The NGOs have figures of their own: in 2017 SOS Desapariciones registered 174 cases of people over the age of 70 disappearing, of whom 54 were found dead and 17 are still missing.

The QSD Global European Foundation for People who have Disappeared, which is run by journalist Paco Lobatón, broadcast deails of 111 people over the age of 70 who went missing, and registered 43 deaths.

Amills points out that these people are the most vulnerable, and they account for 22 per cent of all disappearances even though there are fewer of them than children or younger adults. He believes the response from the security forces, Civil Protection and social media is quickest and most effective when an elderly person goes missing - many of them die in the first 24 hours - but it would help if those at risk were to be equipped with a geo-locator so their families or staff at the homes always know where they are.

Apart from mobile apps, there are devices on the market for 50 euros, although the most sophisticated ones cost around 100: hidden in watches or necklaces, they alert several carers at once, enable the wearer to make and receive calls and warn if they move outside the secure area.

“Elderly people are often more prepared to accept this type of accessory than a mobile phone, and because the localiser is hidden they are not stigmatised by it,” says Rafael Ferrer, the founder of Neki, the company from Aragón which leads the Spanish market in these devices, which are used by 2,000 people.

At a time when the Law of Dependence doesn't come anywhere near covering the needs of these patients, nor do the administrations subsidise the cost of this type of device which many families are unable to afford. In some places organisations like Cruz Roja can help them join the telephone assistance service.

The economic crisis, says Amills, has made dependent elderly people more vulnerable. “Some families have had to bring their relatives out of residential homes, day centres have closed down and there is less money around to pay for carers and other means of support,” he says. Elderly people are the most unprotected, even though in Spain families tend to be very close. “In countries in northern Europe and the USA there are a lot of people on their own and the risk is greater,” says Dr García Ribas.

Additional distress

In March 2016 the QSD Global Foundation signed a collaboration agreement under which the Ministry of Health promised that in these situations it would protect “vulnerable groups” such as the elderly. Last year Imserso signed an agreement to put a 'Mayores a Salvo' plan into effect, which as well as expanding the geo-localisation system also included the need to make families more aware of the risks faced by their elderly relatives. “Many of them aren't aware,” says Paco Lobatón, who admits that they are still waiting for the government's commitments to be converted into action.

For families, who are already trying to come to terms with the implacable destruction caused by this cruel illness, when someone gets lost it is an extremely distressful situation. “More than for the person who has wandered off, in fact, because although they may panic or be confused they tend to forget about it afterwards,” says Dr García Ribas. “I remember a lady who came to the hospital to visit a patient and said she was going to the bathroom. On the way, she decided to go to the village. Her husband was in despair, but 12 hours later she turned up as if nothing had ever happened,” he says.

“There is a tendency to blame yourself for what happens,” says Cheles Cantabrena. “Partners or children know they need to keep an eye on the patient when they are losing faculties, but they may not realise they have to be supervised 24 hours a day. Sometimes basic precautionary measures like bolts on the doors or a sign saying 'No entry' on the back of the front door don't work.”

The organisations say there is a need to create safety networks in the surrounding area. QSD Global proposes protocols for cooperation between police forces and the nearest health centres. Cheles Cantabrana stresses the importance of “non-physical barriers” through friendly relationships, so that staff in local shops and near neighbours, if informed of the situation, can raise the alarm if they spot something and avoid a drama. For Paco Lobatón, there is no time to lose if people's lives are to be saved. There is one death every six days. “This has to be stopped,” he says.

Dr Bernd Reisbeck and Dr Manuela Reisbeck have recently celebrated the tenth anniversary of their practice in Marbella, where they specialise in family medicine, internal medicine and cardiology. Around 100 people attended the anniversary event including patients, partners (doctors) and friends. Manuela and Bernd are pictured right with secretary Angela Hanchen.