Earlier Detection of Alzheimer’s Disease in Down Syndrome – SweDown West and ARC-DS
Short description
People with Down syndrome have a very high risk of developing Alzheimer’s disease, often as early as middle age. Early changes can be difficult to detect because cognitive abilities, communication and the ability to manage different aspects of everyday life vary from person to person. Standard dementia assessments are not always adapted to the needs of people with Down syndrome.
In SweDown West and ARC-DS, we are developing and evaluating methods to detect changes in each individual earlier and more accurately. We combine cognitive tests, interviews with family members and others close to the person, biomarkers and brief digital assessments, and track changes over time. The aim is to achieve more accurate and equitable diagnosis, provide support at an earlier stage and create better opportunities for people with Down syndrome to be involved in their care and in research.
Background
People with Down syndrome have a very high risk of developing Alzheimer’s disease. At the same time, the early signs of the disease can be difficult to detect.
One reason is that people with Down syndrome have different cognitive and communication abilities and vary in how they manage different aspects of everyday life. Changes therefore need to be understood in relation to how each person functioned previously. The tests and methods used in standard dementia assessments are also not always adapted for people with intellectual disabilities.
There is therefore a need for methods that take greater account of individual abilities and circumstances and can identify changes over time.
Aims
In SweDown West and ARC-DS, researchers are developing and evaluating methods to detect, earlier and more accurately, changes that may be signs of Alzheimer’s disease in people with Down syndrome.
By combining different methods and following the same people over time, the researchers aim to gain a better understanding of changes in each individual.
The aim is for the research to contribute to more accurate and equitable diagnosis and create better conditions for support at an earlier stage. Another important aspect is to improve opportunities for people with Down syndrome to be involved in their care and in research.
Methods
The researchers combine several methods to track changes in participants. Cognitive tests are used alongside interviews and questionnaires in which family members or others who know the participant well contribute information about the person’s everyday life and any changes they have observed. The research also uses biomarkers and brief digital assessments.
An important part of both projects is that participants are followed over several years. This makes it possible to compare the same person’s results at different points in time. Researchers can therefore study changes in relation to the individual’s own baseline rather than relying solely on how the person performs at a single assessment.
In SweDown West, participants attend one study visit each year for four years.
In ARC-DS, clinical follow-ups take place annually. Approximately every six months, participants also complete digital assessments over a seven-day period. ARC-DS is an international research collaboration.
Family members and others close to the participant play an important role
A family member or another person who knows the participant well contributes important information to the research. They take part in interviews and questionnaires and can provide support during follow-ups and digital assessments.
By observing how the person manages everyday life over time, information from those close to the participant can complement the other assessments. This is particularly important when researchers are seeking to identify changes in relation to the person’s own previous abilities and circumstances.
Why this research matters
Better methods for detecting early changes could ultimately contribute to more accurate and equitable dementia diagnosis for people with Down syndrome.
The ambition is for knowledge from the projects to improve the possibilities of detecting Alzheimer’s disease earlier, providing support based on individual needs and enabling people with Down syndrome to be more involved in their care and in research.
Participants
SweDown West plans to include 180 adults with Down syndrome aged 25 and over. Participants have mild to moderate intellectual disabilities and can take part with or without dementia or early symptoms of dementia.
ARC-DS is open to people with Down syndrome aged between 30 and 60 who have mild to moderate intellectual disabilities. The international collaboration plans to include a total of 340 participants, 75 of whom will be in Sweden.
A family member or another person who knows the participant well takes part as a study partner, including through interviews and questionnaires and by providing support during follow-ups and digital assessments.
Organisation
