Informal caregiving in the context of dementia Mental and Behavioural Disorders Unspecified dementia
Conditions
Interventions
All participants will participate in the program (non-randomised study). The program was originally developed by Louise Levesque, Francine Ducharme and their team in the 2000s based on the Lazarus and
Sponsors
University of Applied Sciences and Arts Northwestern Switzerland
Eligibility
Sex/Gender
All
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: Caregiver: 1. =18 years of age 2. Regularly providing unpaid care, assistance and/or supervision to a close person with dementia or showing substantial cognitive deficits 3. Lives in same household with the person with dementia or in a separated household 4. Sufficient French or German language skills Person cared for: 5. Has a diagnosis of dementia or shows substantial cognitive deficits 6. Lives in her/his own home (community-dwelling) 7. Lives alone or with other persons
Exclusion criteria
Exclusion criteria: Caregiver: 1. Volunteers who provide regular assistance to a person with dementia but had no prior bond to that person 2. Professional paid caregivers 3. Low caregiver burden (score below 10 on the Zarit Burden Interview) Person cared for: 3. Living in a care institution 4. No memory and behavioral problems
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Participant-reported outcomes: 1. Caregiver burden is measured using the Zarit Burden Interview within 3 weeks before the intervention starts and within 3 weeks after the intervention (pre- and post-intervention). The Zarit Burden Interview is a 22-items questionnaire. Responses are provided on a scale from 0 (never) to 4 (very often). 2. Memory and behavioral problems (MBP) and caregiver’s MBP-related distress measured using the Revised MBP Checklist within 3 weeks before the intervention starts and within 3 weeks after the intervention (pre- and post-intervention). The Revised MBP Checklist questionnaire measures the frequency of 24 MBP in the preceding week between 0 (never) and 4 (daily), and the extent to which this problem disturbed or upset the informal dementia caregivers between 0 (not at all) and 4 (extremely). 3. Caregiver psychological distress is measured using the short version of the Ilfeld Psychiatric Symptoms Index within 3 weeks before the intervention starts and within 3 weeks after the intervention (pre- and post-intervention). The Ilfeld Psychiatric Symptoms Index asks participants to rate 14 symptoms related to depression, anxiety, anger and cognitive disturbance, on a 4-point scale from 1 (never) to 4 (very often). 4. Caregiver self-efficacy is measured using a visual analogue scale (VAS, as suggested by Bandura) within 3 weeks before the intervention starts and within 3 weeks after the intervention (pre- and post-intervention). The VAS ranges from 0 (no confidence at all in my ability to assume my caregiver role) to 10 (full confidence). Outcomes regarding feasibility: 1. Dropout rate (percentage of informal dementia caregivers not completing the program) measured at the end of the program, calculated by the number of participants completing the program and participants not completing the program. Reasons for not completing the program are documented. 2. Participation rate (percentage of attended sessions) measured at the end of the prog | — |
Secondary
| Measure | Time frame |
|---|---|
| Participant-reported outcomes: 1. Usefulness of the four strategies taught in the program (communication, modifying unhelpful thoughts, problem solving and support seeking) is measured within 3 weeks after the intervention using three items for each: 1) I found it interesting, 2) I found it useful, and 3) It helped me in my daily life. The answers are given on a 5-point scale: 0 Not at all or very little, 1 A little, 2 Moderately, 3 Very, 4 Extremely. 2. Usefulness of the six methods used (information provided in the didactic videos, information provided by the course leaders, information provided in the booklet, working on personal situations, group exchanges, and exercises at home) is measured within 3 weeks after the intervention using two items for each: 1) I found it interesting, 2) I found it useful, and 3) It helped me in my daily life. The answers are given on a 5-point scale: 0 Not at all or very little, 1 A little, 2 Moderately, 3 Very, 4 Extremely. 3. Benefits of the program, negative aspects and the extent to which the program met participants’ expectations are assessed with semi-structured qualitative one-to-one interviews within 3 weeks after the intervention 4. Relationship quality between the participants and the persons with dementia measured by conducting semi-structured qualitative one-to-one interviews within 3 weeks before intervention start, between session 5 and 6 of the intervention and within 3 weeks after the intervention | — |
Countries
Switzerland
Contacts
Public ContactSandrine Pihet
Outcome results
None listed