Contributions of Caregiver Management Styles to the Discrepancy Between Reported and Observed Task Performance in People with Dementia

Abstract

Background: The identification and understanding of the discrepancy between caregivers’ reports of people with dementia’s (PwD) performance of activities of daily living (ADLs) and observed performance, could clarify what kind of support a PwD effectively needs when completing tasks. Strategies used by caregivers have not been included in the investigation of this discrepancy. Objective: To (1) investigate if caregivers’ report of PwD’s ADL performance are consistent with PwD’s observed performance; (2) explore if caregiver management styles, depression, and anxiety, contribute to this discrepancy. Methods: PwD (n = 64) were assessed with standardized performance-based (Assessment of Motor and Process Skills, AMPS) and informant-based (Disability Assessment for Dementia, DAD) ADL assessments. Caregivers completed depression (PHQ-9), anxiety (GAD-7), and dementia management style (DMSS: criticism, active-management, and encouragement) questionnaires. Cohen’s kappa determined agreement/disagreement in ADL performance. To investigate the potential discrepancy between the DAD and AMPS, a continuous variable was generated: comparative ADL score. Multiple linear regression analysis explored whether caregivers’ management styles, depression or anxiety could explain the ADL discrepancy. Results: Poor level of agreement between observed and reported ADL performance [k = –0.025 (95% CI –0.123 –0.073)] was identified, with most caregivers underestimating ADL performance. The combined model explained 18% (R2 = 0.18, F (5,55) = 2.52, p≤0.05) of the variance of the comparative ADL score. Active-management (β= –0.037, t (60) = –3.363, p = 0.001) and encouragement (β= 0.025, t (60) = 2.018, p = 0.05) styles made the largest and statistically significant contribution to the model. Conclusion: Encouragement style could be advised for caregivers who underestimate ADL performance, while active management style for those who overestimate it. Findings have scope to increase caregivers’ abilities to support PwD activity engagement in daily life.

Trajectories of cognitive and perceived functional decline in people with dementia: Findings from the IDEAL programme

“…36,40 A possible reason why caregivers rate iADL difficulties over time as increasing more markedly relative to cognitive decline and selfrated iADL may relate to the effects of increasing adjustment to their caregiver role, 41 that is, evolution of coping style and coping strategies, increasing caregiving experience, and changes in the types of care provided. 40,42,43 As caregivers become accustomed to the demands of caregiving they might be more able to recognize or more willing to acknowledge difficulties. This might make it more likely for caregivers to rate iADL as more impaired than self-ratings made by people with dementia.…”

“…This could comprise qualitative interviews at regular intervals and a brief objective measure of iADL with corresponding appraisal ratings; this would allow for a deeper understanding of how caregivers and people with dementia perceive iADL difficulties as well as help understand changes in caregiver adjustment, coping strategies, and stress/burden. This is especially salient as coping strategies, adjustment, and burden influence how informants rate iADL difficulties, 10,40,[45][46][47] and higher perceived stress is often associated with more perceived iADL difficulties. 3,10,15,17,19 How ratings accord with actual abilities is unknown, though a previous study found that people with mild-to-moderate dementia were able to rate performance on iADL tasks more accurately than corresponding ratings by their caregivers, particularly with tasks that do not largely rely on intact memory ability; for example, telling the time, or identifying medication.…”

“…This is especially important considering that the difference between self‐rated and informant‐rated iADL in the present study grew wider when compared to cognition over the duration of the study. When compared with objective measures of iADL, previous studies have found that caregivers often overestimate difficulties 36,40 …”

“…When self‐rated iADL are compared with objective performance, people with dementia generally appraise their own functioning more accurately than ratings made by their caregivers 36 . Indeed, caregivers typically overestimate difficulties compared with objective performance 36,40 . Thus people with mild‐to‐moderate dementia may be able to monitor performance of iADL tasks and update their personal database to acknowledge iADL difficulties.…”

“… 36 Indeed, caregivers typically overestimate difficulties compared with objective performance. 36 , 40 Thus people with mild‐to‐moderate dementia may be able to monitor performance of iADL tasks and update their personal database to acknowledge iADL difficulties.…”