Care staff and family member perspectives on quality of life in people with very severe dementia in long-term care: a cross-sectional study

Abstract

BackgroundLittle is known about the quality of life of people with very severe dementia in long-term care settings, and more information is needed about the properties of quality of life measures aimed at this group. In this study we explored the profiles of quality of life generated through proxy ratings by care staff and family members using the Quality of Life in Late-stage Dementia (QUALID) scale, examined factors associated with these ratings, and further investigated the psychometric properties of the QUALID.MethodsProxy ratings of quality of life using the QUALID were obtained for 105 residents with very severe dementia, categorised as meeting criteria for Functional Assessment Staging (FAST) stages 6 or 7, from members of care staff (n = 105) and family members (n = 73). A range of resident and staff factors were also assessed.ResultsCare staff and family member ratings were similar but were associated with different factors. Care staff ratings were significantly predicted by resident mood and awareness/responsiveness. Family member ratings were significantly predicted by use of antipsychotic medication. Factor analysis of QUALID scores suggested a two-factor solution for both care staff ratings and family member ratings.ConclusionsThe findings offer novel evidence about predictors of care staff proxy ratings of quality of life and demonstrate that commonly-assessed resident variables explain little of the variability in family members’ proxy ratings. The findings provide further information about the psychometric properties of the QUALID, and support the applicability of the QUALID as a means of examining quality of life in very severe dementia.

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.…”

“…Moreover, based on Byrne et al (2006) and Clare et al (2014), positive mood like felling happy and satisfaction with life is usually related with higher QoL for elderly people with dementia. In addition, O'Rourke et al (2015) and Crespo et al (2011) pointed out that making choices independently for elderly people with dementia is an important determinant in improving their QoL in dementia care.…”

“…According to the findings of seven studies (Moyle et al, 2011;Woods et al, 2014;Clare et al, 2014b;Nikmat et al, 2015;O'Rourke et al, 2015;Orpwood et al, 2007;and Moyle et al, 2015) it is suggested that higher quality of relationship with family, friends, neighbours and caregivers, either family caregivers or care staff, is associated with increased QoL of elderly people with dementia. In addition, effective communication with their caregivers for elderly people with dementia will enhance their QoL (Young et al, 2011;Orpwood et al, 2007).…”

“…However, three studies (Wetzels et al, 2010;Clare et al, 2014b;Clare et al, 2014) pointed out that use of psychotropic drug is related to lower QoL for elderly people with dementia. In addition, Black et al (2012) suggested that the level of QoL for elderly people with dementia could decrease when they take more medication including psychotropic medication, and other types of medication.…”

“…There are five studies (Woods et al, 2014;Clare et al, 2014b;Nikmat et al, 2015;Giebel et al, 2013;Heggie et al, 2011) that reported factors associated with QoL in elderly people with mild dementia. Among factors in the early stage, depression and relationship are reported three times.…”