Project Summary

Problem Statement

Dementia is often accompanied by profound behavioral and mood changes, such as agitation, anxiety, depression, apathy, and disinhibition. These changes vary widely from person to person and depend on the type and stage of dementia. At some point, 97% of people with dementia exhibit one or more problematic behaviors, especially during transitions from independent to dependent functioning or from mild to moderate dementia. These behavioral and mood changes complicate daily care and increase the emotional burden on caregivers, resulting in a higher risk of caregiver burnout, greater need for professional care, and rising financial costs. There is always some degree of distress for the person with dementia and/or the informal caregiver, or situations may become unsafe due to this behavior.

Accurately assessing (changes in) mood is crucial to preventing problematic behavior and providing high-quality care. In practice, however, care providers experience this as particularly challenging. Currently, there are few evidence-based methods that offer guidance for observing, recognizing, and interpreting mood states in people with dementia, which further threatens the quality and continuity of care. There is a lack of consensus on how to properly evaluate these behaviors. When a change in mood is observed, early intervention can help prevent problematic behavior.

This project starts from the clear need for reliable support tools to address this gap. For these reasons, the project will map the feasibility of using an evidence-based method to assess mood in people with dementia in real-world care settings.

Methodology

Year 1: Exploration and Development

Two mood states will be selected in consultation with the field based on relevance, complexity, burden, and insights from the scientific literature.

Through desk research and a needs assessment among care providers, we will identify early signs, needs, challenges, and existing methods related to the two selected mood states. An evidence-based method for assessing mood in people with dementia will be developed and linked to existing validated instruments. A workshop will also be designed to teach the method to healthcare professionals.

Year 2: Feasibility Study and Analysis

The developed method will be taught to at least 10 care providers through a workshop. The feasibility of the method and the workshop will be tested in a small-scale pilot in 1 to 2 care organizations with a minimum of 10 care providers.

Expected Results

This project will deliver an overview of the key early signs of two mood states in people with dementia and result in an evidence-based, practice-oriented method for systematically assessing them. The method will be tested for feasibility, culminating in a report with findings on usability and applicability, as well as insights into necessary preconditions. In addition, recommendations will be formulated regarding supportive technologies.

The results will improve care providers’ understanding of the early signs and risk factors of changes in mood, raise awareness in care organizations about the importance of early detection, and offer care teams an initial practical method. This not only provides concrete tools for sustainable application in practice, but also forms a basis for further innovation and scaling within dementia care.