Dementia, Empowerment
Conditions
Keywords
Daily Activities
Brief summary
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
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.
Interventions
OTHEREmpowerment intervention
Empowerment intervention for persons with young onset dementia
Sponsors
Radboud University Medical Center
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
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)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Changes in self-management abilities | 5 months | (Self-Management Ability Scale (SMAS)) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Changes in quality of life | 5 months | (Quality of life - Alzheimer Disease scale (QOL-AD)) |
| Changes in neuropsychiatric symptoms Questionnaire | 5 months | (Neuropsychiatric Inventory (NPI-Q)) |
| Changes in disability | 5 months | (Interview for Deterioration in Daily living activities in Dementia (IDDD)) |
| Caregiver measures:Competence ( | 5 months | Short Sense of Competence Questionnaire (SSCQ)) |
| Caregiver measures: Emotional distress | 5 months | (NPI-Q distress score) |
| Changes in apathy | 5 months | (abbreviated Apathy Evaluation Scale (AES-10)) |
Other
| Measure | Time frame | Description |
|---|---|---|
| Analysis of qualitative focus group interviews with participants, caregivers and health care professionals | 5 months | Qualitative evaluation of the intervention |
Countries
Netherlands
Outcome results
None listed