DEMENTIA IS MORE THAN MEMORYLOSS

When was the last time that you heard or read anything positive about dementia? As soon as we are confronted with the disorder, the negative associations paralyze us in loneliness. Here, however, there are three efficient ways to bring in hope. Turn the triangle around.

1. Disabled vs agency: depart from capacities

Disabled. The one-sided focus on dementia as 'memory loss' in films, books, research, news reports, and thus in people's minds, immediately leads us into a scenario of powerlessness. We immobilize in solitude. Because there is currently no medication or cognitive training program to reverse this decline in our brain. We reduce a person to his memory and the impact of the diagnosis to the patient. However, a person is more than his memory and the disease affects many around him.

Agency. Dementia is broader than memory loss, there is also 'communication loss'. Dementia is not only difficult for the person, but also for the family members and caregivers. They are the 'shadow victims of the disorder'. They are at an increased risk of developing a depression themselves. Considering dementia as a communication problem, allows them more room for manoeuvre. Continue to appeal to capacities that remain unaffected for a longer time in the course of the disease.

• You can not ‘not communicate’. Discover the usefulness of successful advertising techniques. By paraphrasing, mirroring body language, the illusion of choice, the power of silence and other instruments you can continue to engage in the challenging dialogue.
• We can never lose our fantasy. Do not play a memory game (they will lose anyway) but an imagination game so the winnings are in the meeting itself. Experience how much more important it is that we tell than what we tell.

2. The past vs goals: bring in the future

The past. In our interaction with people with dementia, we primarily focus on memories and the past tense. We mainly ask questions about the past to reactivate sleeping feelings in the here and now (reminiscence). We therefore regard them as hourglasses that have run through. Because of this one-sided emphasis on the past, we threaten to bereave them of their perspective on the future (future-loss). And there lies a great gain in quality of life for us to pick up.

Goals. When was the last time you asked an Alzheimer patient what his dreams are? That was the starting point of my doctoral research that resulted in the publication 'Wat Alz?'. Make the near future visible and negotiable, because this will re-install a purpose in life and a reason to get up in the morning. Having something to look forward to is crucial to get moving.

• Some care farms place the mailbox 20 meters outdoors. A subtle incentive to move.
• Enjoying old music is more than just nostalgia. Music is the grammar of hope. The recurring refrain and the predictability of rhyming sentences shift the gaze to the future. To know what’s coming, can be reassuring.
• Taking care of a plant, a garden or a pet brings a purpose into one’s life and activates you.

3. Dead end vs pathways: show there are different approaches

Dead end. Most scientists study Alzheimer’s disease through a microscope in search of the ‘golden medical solution’. To date, these clinical trials have only yielded very little. As the recent withdrawal of pharmaceutical giant Pfizer in Alzheimer studies suggests, that wonder pill is not yet for tomorrow. Funding channels of Alzheimer’s research explicitly favour clinical, diagnostic and basic studies. What about the human and communicational level? On top of that, they give priority to already established researchers. That is understandable but at the same time restrictive. How can innovation arise? What about young researchers, from other research domains, with good ideas?

Pathways. If you want something to change, do not do the same. We will have to dare to look at dementia in other ways. Think out-of-the-microscope. Let us not only focus on the reduced connection between brain cells, but also on the lost connection between people. The MemoryHome application developed in our research shows inspiring ways.

• Experts from scientific advisory boards are often neurologists, biomedics or pharmacists. Broaden it up and include communication scientists. Dementia is also a communication problem.
• In addition to the budgets for established researchers, provide an extra impetus for young researchers from different domains, with fresh ideas.