Quality of life ratings in dementia care – a cross-sectional study to identify factors associated with proxy-ratings

Abstract

ObjectiveQuality of life (QoL) is one major outcome parameter in the care for people with dementia (PwD); however, their assessment is lacking a gold standard. The purpose of this study was to evaluate potential factors associated with nurse-rated quality of life of PwD in nursing homes in Berlin, Germany.MethodAn explorative cross-sectional study was performed in five nursing homes to evaluate QoL. Nurses rated the QoL for all residents with dementia by completing two different standardised assessments (ADRQL, QUALIDEM). Potential associated factors were evaluated concerning resident and nurse related factors. A fixed-effects models of analysis of co-variance (ANCOVA) was used to analyse effects of assumed associated factors of the major outcome parameters ADRQL and QUALIDEM. Associated factors were severity of dementia (GDS), challenging behaviour (CMAI), and other characteristics. Regarding the nurses, burnout (MBI), satisfaction with life (SWLS), attitude (ADQ) and empathy toward residents (JSPE), as well as circumstances of the ratings and days worked in advance of the ratings were assessed.ResultsIn total, 133 PwD and 88 nurses were included. Overall, the ratings show moderate to high QoL in every subscale independent of the instrument used. Assumed confounders relevantly influenced 14 out of 17 ratings. Predominantly, residents’ challenging behaviour, nurses’ burnout and satisfaction with life as well as the circumstances of the ratings are significant and clinically relevant associated factors.ConclusionAssessing QoL of PwD is acknowledged as a central component of health care and health care research. In later stages of dementia, proxy-reported information obtained from quality of life questionnaires is and will continue to be essential in this research. However, methodological issues that underline this research - matters of measurement and instrument validity - must receive more attention. Associated factors in proxy-ratings have to be routinely assessed in order to get more valid and comparable estimates.

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

“…The differences in the rating of QOL between self-report and proxy report generally depend on variables such as depressive symptoms and severity of dementia and should be recognized [55,61,62,63,64]. The QUALIDEM was developed to measure QOL in persons with dementia; however, observational instruments always have the possibility of observer bias [65].…”

Factors influencing quality of life of elderly people with dementia and care implications: A systematic review

“…Although there are nine studies did not find any relationship between demographic characteristics and QoL (Andersen et al, 2004;Grske et al, 2014;Moyle et al, 2015;Monteiro et al, 2014;Sloane et al, 2005;Winzelberg et al, 2005;Wetzels et al, 2010;Salvador et al, 2000), other studies found that higher education (Marventano et al, 2015;Li et al, 2012), males (Woods et al, 2014;Barca et al 2011), white (Black et al, 2012), widowed (Samus et al, 2005) and extroverted characteristic (Li et al, 2012) tended to be positively associated with better QoL for elderly people with dementia. Moreover, Banerjee et al (2005) found that QoL of people with dementia showed decline as with the increasing age, while Mjørud et al (2014) indicated that the QoL was worse among the youngest (<79) and oldest (>90) people with dementia.…”

“…It is assumed that such influence may be more evident among elderly people with severe dementia. Occurrence of challenging behaviours such as physical aggressive behaviours are recognised as another adverse predictor in QoL rating (Grske et al, 2014;Winzelberg et al, 2005;. 20 The influences of physical activities on QoL for elderly people with dementia were identified by five studies (Potter et al, 2011;Beerens et al, 2014;Letts et al, 2011;Silberfeld et al, 2002;Orpwood et al, 2007).…”

Validation of the Cohen-Mansfield Agitation Inventory Observational (CMAI-O) tool

“…Researchers have rightly questioned the accuracy of recall of agitated behaviours by staff members working in care homes, due to the impact of caregiver burden. Care staff reporting a lower burden have been found to provide higher quality of life ratings than those experiencing more caregiver burden (Graske et al, 2014). One possible explanation for this is that care staff experiencing more burden also expect residents to be experiencing this burden (Graske et al, 2014).…”