Researchers from MOPEAD tested different ways to engage patients, including reaching out to suspected early Alzheimer’s sufferers by flagging internet searches like “forgetfulness”
The earlier Alzheimer’s is diagnosed, the better the outlook. Though there is no medication that can stop or reverse the disease, there are medications and lifestyle changes that can help alleviate its effects. The problem, however, according to MOPEAD researcher Assistant Professor Milica G. Kramberger from the University Medical Centre Ljubljana in Slovenia, is that people with memory problems tend to seek out help when their caretakers no longer feel able to cope with their worsening symptoms. The MOPEAD project research entailed a kind of pilot awareness-raising campaign that set out to test different ways of spotting sufferers in the population and directing them towards services that can diagnose and educate, and if necessary, treat them.
“A typical case would involve a family member searching the internet for symptoms after they notice a change in behaviour of their loved one,” says Dr Kramberger. “When someone searched for certain keywords like ‘memory problems’, ‘disorientation’, ‘Alzheimer’s’, ‘dementia’ or ‘brain’, they would be presented with an advertisement that invited them to visit a web page with more information on memory and cognitive problems.” From there, they could choose to do a test, if they met the inclusion criteria. “Then they might be invited to a memory clinic, depending on the outcome of the test.”
Open days at memory clinics
Memory clinics would advertise days where they would open to the public, inviting people who would like to have their memory checked. Neuropsychologists would assess them, and give them more information about their symptoms and their potential causes. “It might be found that the person is suffering from mental impairment, but that it’s due to the effects of depression brought about by the death of a loved one, for example. Those whose symptoms were deemed potentially related to Alzheimer’s would be referred for CSF (cerebral spinal fluid) test and MRI (magnetic resonance imaging).” A diagnosis will lead to them receiving a prescription for one of four medications, which are only effective in early Alzheimer’s and work on the acetylcholine receptors.
Visits to the doctor
“We engaged with doctors to train them to assess people who they suspect to be at risk.” There were some criteria that their patients had to meet: they must be over 65, not taking certain medications or suffering from certain conditions. “People who are more socially isolated are also at increased risk.” Dr Kramberger notes that doctors might meet resistance from their patients. “They might say they don’t want to hear about it because they didn’t go to the doctor for that.” He says that the fact that there is no treatment, doctors might be reluctant to even mention it, simply because there was nothing they could do to help them.
“The interesting thing we found was that we noticed, in Slovenia, that as a result of the awareness campaign, people started to worry about their own health, and started going to the doctor to get their memory checked a lot earlier. In the past people went to the doctor only when their caregiver could not cope anymore.”
“This is the same process as that of the GPs. People with type 2 diabetes have high oscillations of blood sugar, and it’s thought that these oscillations they have much higher risk of developing dementia. We trained the doctors to carry out an assessment and give the patient more information if they had concerns.”
Apart from medical intervention, there are other ways that an early diagnosis can improve living conditions. “When you don’t know what’s wrong, you worry a lot. This often causes severe disputes in families. When you are diagnosed, you know how to react, so when someone tells you that you didn’t come to visit him, even though you are there every day, you know that he forgot this and he’s not looking to cause a dispute.” Early diagnosis also allows families to adapt the person’s living space, and to sort out legal issues before it’s too late.
Dr Kramberger shares a common thread involved in cognitive decline: “Social life is very important. When a person stops socialising and doing physical and mental activity, when they stop reading articles and books and watching the news, their cognitive function begins to decline. They say this is the first steps towards dementia. Being active reduces the risk. Studies show that if you already have cognitive impairment, being active can prolong the length of time before symptoms of dementia progress.”
The MOPEAD research was carried out in Slovenia, Spain, the Netherlands and Germany and Sweden. The project also includes a feasibility study of cultural differences, healthcare system differences and the differences in models of patient engagement throughout Europe. The team will produce recommendations for policymakers based on their findings.
Milica G. Kramberger MD, PhD is an assistant professor at the University Medical Centre Ljubljana in Slovenia. She was the principal investigator for the MOPEAD project.