The study participants will be informal caregivers of home-living people with dementia, and the person with dementia for whom they care. De deelnemers (onderzoeksgroep) zijn informele mantelzorgers en mensen met dementie voor wie de mantelzorgers zorgen
Conditions
Interventions
Caregivers allocated to the manual-based intervention condition will receive a training and support program consisting of multiple components: 1. educating caregivers on effective communication with t
2. teaching skills of how to manage difficult behaviour in the person with dementia
3. suggesting methods of how to cope with the burden of caregiving
4. providing detailed suggestions of how to engage the person with dementia in activities that are enjoyable and stimulating, physically, cognitively or socially. The activities should match the inter
Sponsors
VU University
VUmc
Eligibility
Inclusion criteria
Inclusion criteria: Informal caregivers can be relatives, friends or other persons who care for and support the person with dementia without pay. Caregivers can live with the person with dementia or should visit the person with dementia at least 3 times per week. To be eligible for the study, the person with dementia must be living at home, cared for by the caregiver.
Exclusion criteria
Exclusion criteria: Main exclusion criteria for the caregivers will be major mental or physical illness (e.g. major depression, stroke), that would affect their ability to participate in the training or complete the assessments, and participation in another intervention study. Main exclusion criteria for the person with dementia will be major mental or physical illness (other than dementia), participation in another intervention study, having started on medication for dementia less than 6 months before inclusion, inability to give informed consent. Type of dementia (e.g. Alzheimer, vascular, with Lewy bodies) will not be a selection criterion.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome measure in the caregivers will be quality-of-life, in line with the requirements for this call. Quality-of-life will be assessed with the EQ-5D scale (EuroQol Group, 1990), a widely used measure of health related quality of life. EQ-5D scores from caregivers will also be used to calculate Quality Adjusted Life Years (QALYs) for the economic analysis. The primary outcome measure in the person with dementia will be quality-of-life as assessed with the Dementia Quality of Life scale, completed by means of an interview with the person with dementia. The DQoL has been recommended for assessing quality-of-life in research by the Interdem network on research into psychosocial interventions in dementia (Moniz-Cook et al., 2008). Outcome measures for the economic analysis will be Quality Adjusted Life Years (QALY), which will be calculated from the quality-of-life ratings in the caregiver and the person with dementia, and reference values from the Netherlands. Health service use in the caregiver and the person with dementia and lost productivity in the caregiver will be assessed with the Resource Utilization in Dementia instrument (RUD-Lite; Wimo et al., 1998, Dutch translation), one of the most widely used instruments worldwide to assess resource use in dementia. | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcome measures will be the caregivers’ feeling of competence to care for the person with dementia, as assessed with the Sense of Competence Questionnaire (Vernooij-Dassen et al., 1996), caregivers’ experience of caregiving, as assessed with the Positive Experiences Scale (de Boer et al., 2012) and mood, assessed with the Center for Epidemiologic Studies depression scale (Bouma et al., 1995). Secondary outcome measures in the person with dementia will be activities of daily living, as assessed with the Interview for Deterioration in Daily living activities in Dementia questionnaire (IDDD: Teunisse & Derix, 1991), and the frequency of activities enjoyed by the person with dementia, as assessed with the Pleasant Events Schedule (Teri & Logsdon, 1991). A further outcome measure in the person with dementia will be time to nursing home admission, defined as the time in days between entry of the study and permanent placement in residential care. | — |
Contacts
Public ContactIngrid Kuyper
Van der Boechorststraat 1
Outcome results
None listed