Development of a Multimodal intervention framework for Alzheimer’s Disease in people with Down Syndrome

People with Down syndrome (DS) represent the world’s largest population with a genetic predisposition to Alzheimer’s disease (AD).

Virtually everyone with DS has the neuropathology of AD by the age of 40, and yet this population have largely been excluded from both pharmacological and non-pharmacological trials in AD.

The FINGER study has shown the effectiveness of non-pharmacological intervention in the general population, but has, up until now not included people with an intellectual disability.

The MINDS working group aims to address this inequity through developing a multimodal intervention framework for AD in people with DS, targeting social and lifestyle factors with the aim of delaying cognitive decline and increasing quality of life in this population. Given the ubiquity of AD pathology in people with DS, early intervention could prevent or delay later complications.

The intervention used in the general population needs to be adapted to take into account the unique needs of people with DS, including pre-existing intellectual disability, support structures and living arrangements.

The MINDS working group will leverage existing connections of the Horizon 21 European Down syndrome Consortium and will establish networks with the WW FINGER study to develop this intervention framework. A collective intelligence approach will be used across two workshops in order to do this.

People with DS and their family carers will inform and support the development of the intervention framework throughout the process, leading to the establishment of a Europe wide PPI network for brain health in people with DS.

The resulting intervention framework will be available to the wider research community to support those working with this underserved population.