Abstract
To describe the progression of dependency on a caregiver from mild cognitive impairment (MCI) to severe Alzheimer’s disease (AD) dementia. The 2016 Adelphi Dementia Disease Specific Programme collected data from clinicians in the United States, United Kingdom, France, Germany, Italy, and Spain. Inclusion criteria: age 50 or older, physician-diagnosed mild cognitive impairment (MCI) suspected of AD or AD dementia (mild to severe). Infrequent testing (45 low amyloid CSF, 13 amyloid PET) prevented analyses for the MCI biomarker-positive subgroup. Physicians recruited caregivers/patient family to report about the patient’s needs. Regression analysis was used to adjust for confounders using stepwise regression with age, gender, and country forced into all models. Means and standard deviations are reported. Caregiver data were reported for 6996 patients (1479 MCI, 2108 mild AD, 2383 moderate AD, 1026 severe AD). Across these groups of increasing severity, the proportion of patients receiving professional care only were 0.02 (0.01), 0.03 (0.01), 0.04 (0.01), and 0.10 (0.02), non-professional care only (family, friends) 0.71 (0.04), 0.74 (0.02), 0.60 (0.02), and 0.40 (0.04), and both professional and non-professional care 0.09 (0.02), 0.17 (0.02), 0.35 (0.02), and 0.50 (0.04). Caregiving hours spent per week, across groups of increasing severity, by a community nurse were 0.14 (0.05), 0.50 (0.10), 1.20 (0.24), 2.95 (0.57), nursing home staff 0.75 (0.22), 1.30 (0.30), 8.24 (1.06), and 26.49 (2.77), home help 0.26 (0.07), 1.12 (0.16), 4.10 (0.43), and 5.75 (0.74), patient’s partner 11.28 (2.35), 18.82 (2.21), 33.34 (4.04), and 24.89 (3.65), daughter 1.39 (0.23), 4.16 (0.42), 7.09 (0.63), and 8.78 (1.30), and son 0.48 (0.08), 1.71 (0.25), 2.68 (0.29), and 3.50 (0.75). The majority of hours in the severe stage come from the partner (25 hours/ week) and nursing home staff (26 hours/ week), suggesting these are prime caregiving beneficiaries should AD progression be delayed by future therapeutics.
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