Empowerment Intervention for Persons With Young Onset Dementia

Study Overview
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Brief Summary
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The purpose of this study is to evaluate the effects of an empowerment intervention for community-dwelling persons with young onset dementia and their informal caregivers.

Detailed Description
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This study focuses on the evaluation of an empowerment intervention developed for persons with young onset dementia and their informal caregivers. The empowerment intervention focuses on current capacities, maintenance of autonomy, and increasing the opportunities to feel useful. This pragmatic cluster randomized controlled trial aims to investigate (1) the effectiveness of the intervention concerning participants' well-being, quality of life, and behavioral issues, (2) the effect of the intervention on the informal caregivers' sense of competence and perceived distress, and (3) the impact of the intervention on healthcare costs. Furthermore, the investigators aim to study the feasibility of the intervention to frame an implementation strategy. Participants in the intervention group will receive the intervention for 5 months. Participants of the control group receive care as usual.

Official Title
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Effects of an Empowerment Intervention for Community-dwelling Persons With Young Onset Dementia and Their Informal Caregivers

Conditions
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Dementia, Empowerment

Intervention / Treatment
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* Other: Empowerment intervention


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Diagnosed with dementia before the age of 65 Living at home (community-dwelling) Exclusion Criteria: Dementia is caused by Down's syndrome, Huntington's disease, HIV or alcohol-related dementia. Limited contact between the person with dementia and the informal caregiver (<3 times a week)
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: empowerment intervention<br>Empowerment intervention | Other: Empowerment intervention<br>* Empowerment intervention for persons with young onset dementia<br>|
| No Intervention: regular care<br>Regular care, care as usual | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Changes in self-management abilities | (Self-Management Ability Scale (SMAS)) | 5 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Changes in quality of life | (Quality of life - Alzheimer Disease scale (QOL-AD)) | 5 months | 
| Changes in neuropsychiatric symptoms Questionnaire | (Neuropsychiatric Inventory (NPI-Q)) | 5 months | 
| Changes in disability | (Interview for Deterioration in Daily living activities in Dementia (IDDD)) | 5 months | 
| Changes in apathy | (abbreviated Apathy Evaluation Scale (AES-10)) | 5 months | 
| Caregiver measures:Competence ( | Short Sense of Competence Questionnaire (SSCQ)) | 5 months | 
| Caregiver measures: Emotional distress | (NPI-Q distress score) | 5 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Daily Activities