Dementia and intellectual disability: Identification of changes in motor function and cognition

Research problem and specific questionsThe knowledge about dementia among people with intellectual disability (ID) is limited. Research has shown that different aspects of motor function can constitute early signs of dementia.

However, such studies rarely involve people with ID.The purpose is to summarize and to produce new knowledge about motor and cognitive changes in the development of dementia in ID, to gain an understanding of what is interpreted as signs of dementia, and to spread the knowledge to enable earlier investigation and relevant support.Which motor and cognitive changes can be signs of dementia in people with ID?What motor and cognitive changes do care staff react to as possible signs of dementia, and how do they reason about them?What are the relations between assessment instruments and dementia diagnosis over time, regarding the complete tests, and separately for motor function?Data and methodScoping literature review, for an overview of motor and cognitive changes as signs of dementia among people with ID.Qualitative vignette study, through focus groups with care staff, for an understanding of what observations prompt a dementia investigation.Longitudinal cohort study, using previously collected data, where people with ID have undergone testing and were followed regarding dementia development.

Logistic regression will be used to show the strength of association between assessment and dementia diagnosis.

Social relevance and utilisationThe difficulties in identifying and interpreting signs of dementia in ID are known and there is a need for increased knowledge among care staff.

These difficulties entail an imminent risk of unequal care, where people with certain disabilities do not get access to the same care as others.

This project will contribute with knowledge, which will be spread directly to affected employees in social services, as well as through scientific publication.

Plan for project realisationThe project is carried out in collaboration with researchers with expertise in dementia and ID at Uppsala University, and with a reference group with representatives from an ID association, the Swedish Dementia Center and care staff.

The reference group will be consulted regarding results and design, which the project is flexible for.The costs sought concern salary funds, collaboration (compensation for participation in the reference group), dissemination of results (presentation at a conference), ethics application and indirect costs.