“Dementia changes how we see the world”: Prof. Dr. Margareta Halek on World Alzheimer’s Day 2023

The motto of this year's World Alzheimer's Day is "Dementia - the world upside down " - What do you think of this motto?

That the view of the world changes for the person with dementia and for the family. It sounds so simple, but it's one of the biggest challenges. This change is initially non-judgemental. The new perspective includes worries, fears, excessive demands but also many positive moments - humour, having time, allowing emotions, appreciating moments. The family and circle of friends is constantly changing, nothing stays the same, in some phases to the advantage, in some phases life becomes a great challenge. Changing perspectives becomes a constant companion for everyone.

What kind of support do people with dementia and their relatives need to lead a good and self-determined life?

People with dementia and their carers/families need emotional, practical (medical, nursing, social), advisory and financial support for this constant change of perspective. Depending on what is at stake, help is needed that provides answers to questions that arise, but also to the next phase of change. We have many good programmes in Germany. Unfortunately, not for everyone who needs it, sometimes too late, sometimes not long enough. We still need to work on this, on equitable access, on continuous support for those affected and their families, with suitable services.

What research do you think is needed to provide good support for people with dementia and their relatives in the future?

First of all, it would be helpful if the many innovative and well-evaluated model projects were to be implemented. It is inefficient to keep promoting something new and spending money if the good, scientifically sound ideas do not find their way into care. It's pointless and frustrating.

Then we still have many questions about the care and support of people with rare forms of dementia - research is needed here to understand how good care works, which care concepts make sense and how effective they are.

People living alone with dementia - this is still an open research gap. The question here is how we can reach these people in good time and support them in such a way that autonomy and security are maintained for as long as possible without a family network providing care.

Finally, to come back to my first point, we still need good ideas on how to get the existing knowledge about the best possible care for people with dementia into the minds of carers and families and into practice. We are still talking here about unfavourable framework conditions, but also about the security of tried and tested routines and we need good ideas on how changes in care can be made sustainably.