Factors Associated with Self and Informant Ratings of the Quality of Life of People with Dementia Living in Care Facilities: A Cross Sectional Study

Abstract

BackgroundThere is no consensus regarding the optimal approach to assessment of the quality of life of people with dementia. We undertook the present study to describe and determine the factors associated with ratings of the quality of life of a cohort of people with dementia living in a residential care facility.Methodology/Principal Findings351 people with dementia living in residential care facilities, and their staff and family informants participated in this cross sectional observational study. Quality of life was measured using self (Quality of Life in Alzheimer's Disease [QoL-AD] scale), and informant (QoL-AD and Alzheimer's Disease Related QoL Scale) reports. 226 people (64%) with dementia (median MMSE 17; 12–21) were able to self rate the QoL-AD scale and these subjects' ratings were compared to ratings by staff and family. Both staff and family informant ratings of the QoL-AD underestimated self ratings (mean difference −7.8, 95% CI −8.8, −6.7 for staff rated QoL-AD; and mean difference −7.2, 95% CI −8.5, −6.0 for family rated QoL-AD). Self ratings of QoL were lower among people who were restrained, had fallen or had pain. Informant ratings of the QoL of the participants with dementia were consistently and significantly lower for people with severe cognitive impairment, who had fallen, had presence of neuropsychiatric symptoms, or where care giver distress was present. Documented restraint, reported pain and neuropsychiatric symptoms were independently associated with lower self rating of the QoL-AD in multivariate models. Cognitive impairment, case conferencing, hospitalizations and neuropsychiatric symptoms were found to be independently associated with staff rated ADRQL.ConclusionsThe majority of people with dementia living in residential care facilities can rate their own QoL. Informant ratings underestimate self ratings of QoL of people with dementia, and appear to be associated with factors which are not associated with self ratings.

Management of patients with Alzheimer’s disease: pharmacological treatment and quality of life

“…This possibly reflects decreased insight associated with dementia, or a differential appraisal of the impact of emerging BPSDs in patients compared with carers [Banerjee et al 2009]. This association has been reported both for family caregivers of community-dwelling patients [Hoe et al 2007], including those with mild forms [Karttunen et al 2011], and for nursing home residents with QoL rating performed by staff [Beer et al 2010;Hoe et al 2006].…”

Determinants of quality of life in young onset dementia – results from a European multicenter assessment

“…The relationship between QOL and cognition as well as dementia severity is less clear. Correlations are generally low (Banerjee et al, 2009) but some studies link better cognitive functioning to higher QOL (Beer et al, 2010;Crespo, Hornillos, & de Quir os, 2013). QOL has also been associated with an increased amount of unmet needs in the study of Hoe et al (2005).…”

A multicentre survey of acute hospital nursing staff training in dementia care

“…Quality of life for people with dementia requires emphasis on more than just physical care [7] . Emotional, psychosocial and spiritual needs are also paramount [7] .…”

“…Emotional, psychosocial and spiritual needs are also paramount [7] . Particular techniques are required to meaningfully communicate and interact with patients with dementia.…”