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Table 2 First round - rating of the 46 needs aspects (n = 68)

From: Neurocognitive disorders: what are the prioritized caregiver needs? A consensus obtained by the Delphi method

  Distribution of the ratings along the scale (%)
Needs aspects DIMa Median Mean (SD) 1–3 4–6 7–9
Information on the neurocognitive disease and its progressionb INF-P 9 8.39 (1.10) 0 7 93
Providing emotional and affective support to PWNCDb SKI-C 9 8.32 (1.32) 2 6 92
Information on cognitive disordersb INF-P 9 8.23 (1.13) 0 9 91
The diagnostic process of the neurocognitive diseaseb INF-P 9 8.19 (1.24) 0 11 89
Communication between caregivers and PWNCDb SKI-C 9 8.17 (1.41) 0 14 86
Management of the PWNCD painb SKI-C 9 8.17 (1.35) 2 6 92
Coping with cognitive disordersb SKI-C 9 8.11 (1.39) 0 15 85
Coping with behavioral crisis at homeb SKI-C 9 8.09 (1.66) 2 12 86
Coping with behavioral disordersb SKI-C 9 8.01 (1.49) 1 12 87
The research (disease and therapies) b INF-P 9 8.01 (1.34) 0 16 84
Roles of the health professionals involved in the PWNCD care pathwayb INF-P 9 7.96 (1.39) 0 15 85
Information on behavioral disordersb INF-P 9 7.94 (1.74) 5 10 85
Information on the drugs for the neurocognitive disease (efficacy, tolerance and utilization) b INF-P 9 7.84 (1.69) 4 14 82
Undertaking the steps for the services utilization b SKI-S 9 7.50 (2.35) 9 13 78
Finding available services closer to homeb SKI-S 9 7.49 (2.31) 7 15 78
Learning to adjust the sedative drug dose based on the patient’s condition (e.g. sedation, agitation) SKI-M 8.5 6.97 (2.7) 14 19 67
Coping with the relationship evolution between caregivers and PWNCDb SKI-C 8 7.83 (1.40) 0 20 80
Stimulating/appropriates activities for PWNCD at homeb SKI-C 8 7.79 (1.59) 1 19 80
Basic care to PWNCDb SKI-C 8 7.74 (1.67) 2 15 83
Information on the PWNCD drugs for comorbidities (efficacy, tolerance and utilization) b INF-P 8 7.56 (1.66) 3 21 76
Coping with feeling related to caring (e.g, frustration, culpability, stress) SKI-C 8 7.53 (1.79) 3 23 74
Financial issues for the ADLb INF-S 8 7.5 (2.19) 8 13 79
Information on non-pharmacological treatment for PWNCD INF-P 8 7.45 (1.59) 0 30 70
Communicating on the PWNCD disease and the caregiver role with the entourage SKI-C 8 7.44 (1.85) 3 26 71
Information on nursing care at home INF-S 8 7.24 (2.41) 9 17 74
Legal issues INF-S 8 6.98 (2.24) 7 26 67
Information on respite, day care INF-S 8 6.90 (2.65) 13 17 70
Information on institutionalization and long-term care unit INF-S 8 6.90 (2.50) 11 25 64
Being able to manage the PWNCD drugs SKI-M 8 6.55 (2.87) 20 20 61
Information on the consequences of caregiving (caregiver health) INF-C 7 7.09 (1.97) 5 29 66
Learning to seek and accept help from the entourage SKI-C 7 6.92 (2.01) 3 35 62
Information on associations and foundations INF-S 7 6.60 1.93) 5 38 57
Information on environmental safety INF-S 7 6.34 2.37) 12 33 55
Coping with difficulties to administer the PWNCD drugs SKI-M 7 6.22 (2.82) 20 25 55
Review of the PWNCD drug prescribing by a pharmacist (optimization of the therapeutics) SUP-P 7 6.01 (2.68) 18 31 51
Being able to manage their drugs (caregiver’s drugs) SKI-M 7 5.40 (3.33) 35 14 51
Annual medical check-up for caregiver by a GP SUP 6.5 6.23 (2.70) 17 33 50
Information on drugs for caregiver’s psychological disorders INF-C 6 6.25 (3.35) 10 45 45
Information on the caregiver’s drugs (efficacy, tolerance and utilization) INF-C 6 5.98 (2.58) 16 42 42
Support by a social worker SUP 5 5.67 (2.92) 24 36 40
Obtaining a form with timing of PWNCD drug administration SUP-P 5 5.62 (2.82) 20 39 41
Identification and resolution of difficulties associated with the PWNCD drug management SUP-P 5 5.44 (2.77) 22 39 29
Emotional support for the caregiver by a psychologist SUP 5 4.76 (2.56) 29 44 27
Review of the caregiver drug prescribing by a pharmacist (optimization of the therapeutics) SUP-P 2.5 3.62 (2.81) 53 28 19
Identification and resolution of the difficulties associated with the caregiver’s drug management SUP-P 2.5 3.52 (2.70) 53 28 19
Obtaining a form with timing of caregiver drug administration SUP-P 2 3.42 (2.90) 58 23 19
  1. ADL activities of the daily living, GP general practitioner, PWNCD people with a neurocognitve dirsorder
  2. aDimension of need. INF-P information needs about patient (people with NCD), INF-C information needs about caregiving, INF-S information needs about services, SKI-C coping skills needs, SKI-M Skills needs about medication, SKI-S skills needs about services, SUP support needs for the caregiver, SUP-P pharmaceutical support
  3. bAspect of need selected for the second round