Dementia
Conditions
Interventions
Intervention type 1 focuses on setting (medical) advance treatment orders in detail with persons with dementia and their family caregivers during the process of ACP.
Intervention type 2 focuses on a
forms to document results of ACP conversations
and prompting of persons with dementia and their family caregiver by providing a question prompt list to consider personal questions for the GP on a future with dementia. The contents of training, for
Sponsors
Leiden University Medical Center, Leiden, the Netherlands
Eligibility
Inclusion criteria
Inclusion criteria: We aim to include 45 general practitioners from different practices. Each general practitioner is invited to bring a practice nurse to receive the training and participate in delivering the intervention. The targeted total sample size is 279 persons with dementia and their family caregivers. Inclusion criteria for GPs: • GPs who are willing to contact persons with dementia and their family caregivers from their practice in the Netherlands for study participation and who are willing to complete training and study requirements to conduct ACP conversations with persons with dementia and their family caregivers if randomized to an intervention group. Inclusion criteria for persons with dementia: • diagnosis of irreversible dementia established by a physician; • decisional capacity and the person can be interviewed (adequate memory, speech and language, and ability to make decisions); • living at home; • sufficient capacity of the Dutch language; • adequate vision and hearing (can be achieved by using corrective lenses or hearing aid); • the family caregiver is also willing to participate in the study. Inclusion criteria for family caregivers of persons with dementia: • at least 18 years old; • sufficient capacity of the Dutch language; • decisional capacity; • adequate vision and hearing (can be achieved by using corrective lenses or hearing aid); • the person with dementia is also willing to participate in the study.
Exclusion criteria
Exclusion criteria: Exclusion criteria for GPs: • GPs with no persons with dementia in their practice; • GPs who plan to resign within one year. Exclusion criteria for persons with dementia: • currently affected by a severe psychiatric disorder (e.g., major depression, schizophrenia, substance abuse, PTSD) as diagnosed by a psychiatrist, psychologist, or physician; • a life expectancy of less than four weeks; • severe aphasia or another language disorder. Exclusion criteria for family caregivers of persons with dementia: • currently affected by a severe psychiatric disorder (e.g. major depression, schizophrenia, substance abuse, PTSD) as diagnosed by a psychiatrist, psychologist, or physician, if known to the GP of the person with dementia; • a life expectancy of less than four weeks if known to the GP of the person with dementia; • severe aphasia or another language disorder if known to the GP of the person with dementia.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome is wellbeing of persons with dementia measured by the Quality of Life in Late-Stage Dementia scale (QUALID) with observable indicators of wellbeing. | — |
Secondary
| Measure | Time frame |
|---|---|
| The secondary outcomes are decisional conflict, self-efficacy to interact with physicians, and family caregiver perception of physician-family caregiver communication. Family caregivers’ decisional conflict is measured with the Decisional Conflict Scale (DCS). This scale contains 16 items. The last 7 items specifically refer to previous health care decisions (subscales Uncertainty and Effective decision). When such decisions did not take place during follow-up periods of 6 months, these 7 items are excluded. Self-efficacy to interact with physicians is measured with the Perceived Efficacy in Patient-Physician Interactions (PEPPI-5) scale. Family caregiver perception of physician-family caregiver communication is measured with a slightly adapted form of the Family Perception of Physician-Family Communication (FPPFC) scale. Regarding the FPPFC, we will not use 1 of 7 items that specifically refers to the end of life from a retrospective perspective. In data from an earlier study, we found that after removal of the item, Cronbach’s alpha was still high. Readiness of the person with dementia to engage in the particular ACP intervention is tested for moderating effects on the primary outcome. Readiness of the family caregiver to engage in the particular ACP intervention is tested for moderating effects on both the primary outcome and secondary outcomes. Regarding outcomes at the end of life, we will explore effects of the interventions on decision regret regarding health care decisions with the Decision Regret Scale (DRS); satisfaction with care (evaluation of quality of care) with the Satisfaction With Care - End-of-Life in Dementia (SWC-EOLD); and comfort in dying with the Comfort Assessment in Dying - End-of-Life in Dementia (CAD-EOLD) instruments. We used timeframes that worked well in earlier research; last month for the SWC-EOLD and last week for the CAD-EOLD. The main process indicator is goal-concordant care as perceived by family caregivers and assessed by | — |
Contacts
Public ContactJenny van der Steen
Leiden University Medical Center, Leiden, The Netherlands
Outcome results
None listed