RESEARCH ARTICLE
Self and carer perspectives of quality of life in dementia using the QoL-AD Vasiliki Orgeta1, Martin Orrell1, Barry Hounsome2, Bob Woods3 and in collaboration with the REMCARE team 1
Division of Psychiatry, University College London, London, UK Faculty of Health Sciences, University of Southampton, Southampton, UK 3 DSDC Wales, Bangor University, Bangor, UK Correspondence to: V. Orgeta, E-mail: [email protected] 2
Objective: Quality of life (QoL) is one of the most important outcomes in improving well-being in people with dementia (PwD). The primary aim of the present study was to compare self and carer ratings of QoL in PwD and to identify the most important factors influencing self and carer ratings. Methods: We conducted a cross-sectional analytic study of 488 dyads using the Quality of Life in Alzheimer’s Disease scale, demographics, data on self-rated health, and clinical characteristics. Results: Higher levels of self-rated health in PwD were associated with higher self-rated QoL after controlling for depression and activities of daily living. When the carer experienced less stress related to caregiving, the PwD reported better QoL. Higher carer-rated QoL was associated with less carer stress, better health for the family carer, and the PwD being of younger age. When carers lived with the PwD, and reported lower levels of depression and better functional ability for their relative, carer-rated QoL was higher. Conclusions: The self-rated health of PwD and carers influences the ratings they make of the QoL of the PwD indicating that it is an important influence on QoL in this population. Copyright # 2014 John Wiley & Sons, Ltd. Key words: quality of life; dementia; self-rated QoL; dementia caregivers; self-rated health History: Received 24 October 2013; Accepted 26 March 2014; Published online 2 May 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4130
Maintaining or improving quality of life (QoL) in people with dementia (PwD) is currently a key outcome of health services and of the increasing number of psychosocial interventions targeting this population (Moniz-Cook et al., 2008). Defining and systematically measuring QoL for PwD is becoming an increasingly important research objective, where the importance of the person’s subjective experience in evaluating the impact of dementia is emphasized (Novella et al., 2001). As a result, recent research in the area has tried to identify which measures are the most valid and which factors influence QoL ratings in PwD (Bryan et al., 2005; Matsui et al., 2006). Overall, the consensus from studies investigating agreement between self-rated and proxy-rated QoL (Logsdon et al., 2002; Vogel et al., 2006) is that PwD rate their QoL higher as compared with caregivers or Copyright # 2014 John Wiley & Sons, Ltd.
other informants (Hoe et al., 2007; Conde-Sala et al., 2009), raising questions about the level of agreement between self and carer ratings (Logsdon et al., 1999; Conde-Sala et al., 2009). Although most studies examining discrepancies between self and carer ratings use the Quality of Life in Alzheimer’s Disease (QoLAD) scale, other QoL measures have also been used, such as the Dementia Quality of Life instrument (Ready et al., 2006), the Nottingham Health Profile (Boyer et al., 2004), the EuroQol EQ-5D (Bryan et al., 2005), or the Duke Health Profile (Novella et al., 2001). Most of the studies have been conducted in community settings and less in PwD living in institutional care with the majority comparing self-rated versus carer-rated QoL as opposed to composite scores (Supporting information). Higher self-rated QoL is associated with lower levels of depression (Logsdon et al., Int J Geriatr Psychiatry 2015; 30: 97–104
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2002; Snow et al., 2005; Bosboom et al., 2012), decreased presence of neuropsychiatric symptoms (Matsui et al., 2006; Gomez-Gallego et al., 2012), lower dependence in activities of daily living (ADLs; Nakanishi et al., 2011; Conde-Sala et al., 2013), and in some studies, better cognitive function (Matsui et al., 2006; Conde-Sala et al., 2013; Crespo et al., 2013). Self ratings of QoL are higher among those reporting high levels of education (Logsdon et al., 1999; Huang et al., 2009; Karttunen et al., 2011) and those taking acetylcholinesterase inhibitors (Hoe et al., 2007; Bosboom et al., 2012) and inversely associated with awareness of deficits (Bosboom et al., 2012; Conde-Sala et al., 2013; Sousa et al., 2013), experience of pain (Snow et al., 2005; Beer et al., 2010), and presence of burden in family caregivers (Logsdon et al., 2002; Conde-Sala et al., 2009) or caregivers’ depressive symptoms (Logsdon et al., 1999; Snow et al., 2005). Similarly to self ratings, carer ratings are strongly influenced by the PwD’s ADLs (Gomez-Gallego et al., 2012) and cognition (Snow et al., 2005; Beer et al., 2010; Bosboom et al., 2012), with lower carer ratings associated with greater dependence and lower cognitive scores. Presence of depression (Fuh and Wang, 2006; Hoe et al., 2007; Conde-Sala et al., 2013), neuropsychiatric symptoms (Conde-Sala et al., 2009; Wolak et al., 2009; Nakanishi et al., 2011), and experience of burden (Conde-Sala et al., 2009; Wolak et al., 2009; Black et al., 2012) or depression in the family carer (Logsdon et al., 1999; Logsdon et al., 2002; Snow et al., 2005; Karttunen et al., 2011) also appear to be strongly adversely related to carer-rated QoL. Carer ratings are lower as apathy (Hurt et al., 2008; Leon-Salas et al., 2011; Nakanishi et al., 2011) and dementia severity increases (Nakanishi et al., 2011; Sheehan et al., 2012) and if carers rate their own QoL less positively (Conde-Sala et al., 2009). Despite however recent research growth on this topic, some findings remain contradictory. For example, whereas several studies report that dementia severity influences both carer and self ratings (Ready et al., 2002; Snow et al., 2005), others do not find such an association (Novella et al., 2001; Bryan et al., 2005). Results are also inconsistent in relation to the influence of the type of the caregiving relationship and whether differences between child proxy-rated versus spouse proxy-rated QoL exist (Sands et al., 2004; Conde-Sala et al., 2009). An important limitation of previous research is that there are currently no studies that have investigated whether self-rated health is associated with self-rated QoL in PwD. Self-rated health provides a subjective weighting of health problems not captured by Copyright # 2014 John Wiley & Sons, Ltd.
objective health measures (Kiecolt-Glaser and Glaser, 2002), which although related to QoL is a different construct, capturing an individual’s mental representations of their own personal health (Idler and Benyamini, 1997; Bailis et al., 2003). A number of studies have documented the predictive significance of self-rated health, for outcomes such as mortality and psychological wellbeing (Knauper and Turner, 2003). For example, those reporting their health as “poor” or “fair” have higher mortality compared with those that report their health as “good” or “excellent” (Idler and Benyamini, 1997), including older people with cognitive impairment (Walker et al., 2004). Comparing self reports with carer ratings is necessary to determine the feasibility and potential limitations of using proxies as a substitute of self-rated QoL. As is indicated by previous research, more evidence is necessary to specify the most important factors influencing self-rated and carer-rated QoL in PwD. The primary aim of this study was to determine if self-rated health of PwD and their carers will be independently associated with QoL ratings after controlling for demographic and clinical factors, by including PwD’s and carers’ ratings of their own health. Methods The sample consisted of 488 people with a diagnosis of dementia according to DSM-IV criteria, along with their informal caregivers. An informal caregiver was defined as a person who had regular contact with the PwD (for 4 h per week) and was assisting the person with basic and instrumental activities. All of the participants were seen as outpatients in the National Health Service in several areas of the UK. The present data were collected as part of the REMCARE study, investigating the effects of reminiscence therapy in people with dementia and their family caregivers (Woods et al., 2012). All people with dementia and their carers gave their consent to participate in the study. The assessment instruments were administered by a team of research assistants. The study was approved by the Multi-Centre Research Ethics Committee in Wales. Measures
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The QoL-AD (Logsdon et al., 1999) scale was administered to PwD. Caregivers completed the scale as a self-report instrument. The QoL-AD comprises 13 items that assess several domains of QoL. Responses are rated from 1 (poor) to 4 (excellent), and higher ratings indicate better QoL (range of scores Int J Geriatr Psychiatry 2015; 30: 97–104
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•
•
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13–52). In cases where one or two items were missing, the mean QoL-AD item score was calculated, and this value was substituted for the missing items (Logsdon et al., 2002). For a total of 25 participants, more than two QoL items were missing, and these participants were excluded from further analyses. A total of 463 matched scores remained and were included in the final analyses. Cronbach’s alpha for self-rated QoLAD was α = 0.81 and for carer ratings α = 0.84. Depression for people with dementia was measured by the Cornell Scale for Depression in Dementia (Alexopoulos et al., 1988), a 19-item intervieweradministered measure, using information from interviewing the PwD and their carer, with scores >7 considered as suggestive of significant depressive symptomatology. Anxiety was measured by the Rating of Anxiety in Dementia Scale (Shankar et al., 1999), which comprises 18 items assessing anxiety based on a structured interview with the carer and the PwD. Scores of 11 or above indicate clinically significant anxiety. The Bristol Activities of Daily Living Scale (Bucks et al., 1996) has been developed specifically for use with PwD, as a carer-rated instrument consisting of 20 daily-living abilities, where higher scores indicate lower levels of ADLs (scores range from 0 to 60). Dementia severity was assessed by the Clinical Dementia Rating (CDR) scale (Morris, 1993), administered as a structured interview collecting information from both the informant and the PwD. The CDR provides a global rating of dementia, with CDRs of 0, 0.5, 1, 2, and 3 indicating no, questionable/very mild, mild, moderate, and severe dementia, respectively. Self-rated health was measured by the Visual Analogue Scale (EQ-VAS) of the EQ-5D, commonly used to measure self-reported health status (EuroQoL, 1990). The EQ-VAS records the respondent’s selfrated health on a vertical, VAS (with 0 representing worst imaginable health and 100 representing best imaginable health), providing a quantitative measure of health outcome as judged by the individual respondents. The EQ-VAS has been used often in measuring self-rated health in people with chronic disease (Hayes et al., 2008). Caregiver’s mental health was measured using the General Health Questionnaire (GHQ-28; Goldberg and Hillier, 1979), used widely to assess psychological well-being in carers. We used the 4-point Likert type scale (ranging from 0 to 3), where a higher score indicates more distress for carers. Stress specific to the caregiving situation was measured by the Relative’s Stress Scale (RSS; Greene et al., 1982), administered as a self-report measure,
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asking carers to complete 15 five-point Likert items, (ranging from 0 to 4). A higher score indicates higher stress specific to caregiving. Statistical analysis
We used nonparametric Mann–Whitney U and Kruskal– Wallis tests to analyze the relationships between the scores of PwD and their family caregivers on the QoLAD and the sociodemographic and clinical variables. The correlations used were Pearson’s for continuous variables and Spearman’s for discontinuous variables. To determine the effect of clinical variables on the perception of QoL in PwD and carers, multivariate regression analyses were performed. Self and carer ratings on the QoL-AD were entered as the dependent variables, whereas the predictors were those factors found to be significant in the correlational analyses. As the QoL-AD has an item asking PwD to self-rate their physical health, we controlled for this overlap by removing the relevant item and performing analyses using a 12-item version of the questionnaire. Results Demographic data
A total of 488 PwD were interviewed, of whom 49.6% were women. The mean age was 77.6 years (range 54–95), and the mean years of age leaving school was 15.5 years. A total of 399 PwD (82.3%) lived in the community with their family caregiver, whereas the rest of the sample lived in the community on their own or with other family members. Of the 488 PwD, 72.1% were married, and the remaining 27.9% were single, separated, widowed, or divorced. A total of 67.1% of the sample of caregivers were female, where 71% of caregivers were the PwDs’ spouse, 20.7% were the son or daughter of the PwD, and the remaining caregivers (8.3%) were another relative/friend or partner. The carers’ mean age was 69.8 years (range 23–91), and the mean years of age leaving school was 16.7 years. Clinical data
Of the PwD, 74.6% had a score of 1 (mild dementia) in the CDR scale, whereas the remaining sample had a score of 2 (moderate dementia). The mean Bristol Activities of Daily Living Scale score was 15.9 (SD = 9.6). The mean Cornell score was M = 7.0 (SD = 5.0) and for the Rating of Anxiety in Dementia Scale M = 8.5 Int J Geriatr Psychiatry 2015; 30: 97–104
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(SD = 7.1). Stress specific to the caregiving situation (RSS) was 21.6 (SD = 10.7), and the overall mean GHQ was 22.9 (SD = 11.8).
Factors associated with perception of quality of life in people with dementia and their carers
Levels of self-rated health were positively correlated with self-rated QoL. People with mild dementia rated their QoL higher as compared with those with moderate dementia. Higher scores on self-rated QoL were associated with lower depression and anxiety but higher ability in ADLs (Table 1). Younger age in PwD and higher self-rated health were associated with higher carer-rated QoL scores. Carers rated Pwd’s QoL as higher when the PwD was married or lived with a spouse. As with self ratings, higher carer-rated QoL was associated with greater levels of ADLs and lower levels of anxiety and depression (Table 1). Higher ratings of self-rated QoL were related to higher levels of family carer health (EQ-VAS) and lower levels of psychological distress (GHQ) and stress related to caregiving (Table 2).
For carer ratings, correlational analyses showed that women and those of younger age rated their relative’s QoL higher. Those that lived with the PwD and reported better health rated their relative’s QoL as better, as did carers who were spouses versus son/ daughter caregivers. Carers who were the sole caregiver and were providing more hours of every-day care to the PwD rated their relative’s QoL as lower. Higher scores in the GHQ and the RSS were associated with lower scores in carer ratings (Table 2).
Multivariate linear regression analysis
Regression analyses (Table 3) showed that after controlling for ADLs, ratings of anxiety and depression, self-rated health, and dementia severity were significant predictors of self-rated QoL in PwD, with the model accounting for 16% of the variance in self ratings. PwD with higher self-rated health and slower dementia severity reported better QoL. Levels of depression, age, and ADLs made an independent contribution in explaining carer ratings, with the model accounting for 36% of the total variance. Those of
Table 1 PwD factors and their relationship with self-rated and carer-rated QoL-AD scores QoL-AD self ratings
QoL-AD carer ratings
PwD factors M Agea Genderb Male Female Educationa Self-rated healtha Marital statusc Married Widowed Single Living statusc With spouse With relative Alone CDRb Mild Moderate CSDDd RAIDd BADLSd
SD
Statistic
M
SD
r = 0.060 z = 1.338
50.8% 49.2%
35.9 37.2
8.7 8.1
74.5% 21.2% 4.3%
34.9 34.2 34.0
4.9 4.7 4.8
χ = 2.597
71.2% 13.3% 15.5%
34.9 33.7 34.5
4.9 4.8 4.6
χ = 3.594
71.7% 24.9%
35.3 33.2
4.3 5.0
Statistic r = 0.160* z = 0.040
31.6 31.5
6.3 6.5
2
32.2 29.2 32.3
6.2 6.6 7.8
χ = 18.063**
2
32.3 29.7 29.9
6.1 7.3 6.6
χ = 11.187*
z = 2.706*
31.3 29.8
6.4 6.7
z = 1.569
r = 0.027 r = 0.353**
r = 0.216** r = 0.194** r = 0.154**
r = 0.055 r = 0.175** 2
2
r = 0.450** r = 0.375** r = 0.517**
PwD, people with dementia; QoL-AD, Quality of Life in Alzheimer’s disease; CDR, Clinical Dementia Rating; CSDD, Cornell Scale for Depression in Dementia; RAID, Rating of Anxiety in Dementia; BADLS, Bristol of Activities in Daily Living Scale. a Pearson’s coefficient. b Mann–Whitney U test. c Kruskal–Wallis. d Spearman’s coefficient. *p < 0.01; **p < 0.001.
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Table 2 Caregiver factors and their relationship with self-rated and carer-rated QoL-AD scores QoL-AD self ratings
QoL-AD carer ratings
Caregiver factors M
SD
Statistic
M
SD
Statistic
r = 0.081
Agea Genderb Male Female Educationa Self-rated healtha Marital statusc Married Widowed Single Family relationshipc Spouse Son/daughter Other Living with the PwDb Yes No Leaving relative alonec Not at all Up to half a day Up to a whole day Sole caregiverb Yes No GHQd RSSd
r = 0.157**
z = 0.643
67.5% 32.5%
37.1 37.5
5.4 5.3
88.45% 2.9% 8.6%
34.8 35.5 33.5
4.7 5.7 5.5
χ = 1.877
71.3% 19.9% 8.9%
34.9 34.0 33.5
4.9 4.2 5.4
χ = 5.124
82.2% 17.8%
34.8 34.6
4.4 4.9
21.6% 57.6% 20.8%
34.1 34.3 35.5
4.3 5.2 4.5
60.9% 39.1%
34.6 34.6
4.9 4.7
z = 3.464*
30.8 33.0
6.4 5.9
2
31.7 31.5 31.0
6.3 8.9 7.6
χ = 1.432
2
32.4 29.0 30.3
6.0 6.4 7.2
χ = 23.442***
z = 0.183
32.3 29.7
6.1 7.3
z = 3.174**
2
31.0 31.2 34.4
5.4 6.0 7.0
χ = 17.592***
z = 0.150
32.0 30.8
6.6 6.0
z = 2.048*
r = 0.009 r = 0.146**
χ = 2.985
r = 0.123* r = 0.191***
r = 0.026 r = 0.303*** 2
2
2
r = 0.335*** r = 0.620***
QoL-AD, Quality of Life in Alzheimer’s Disease; PwD, people with dementia; GHQ, General Health Questionnaire; RSS, Relative’s Stress Scale. Pearson’s coefficient. b Mann–Whitney U test. c Kruskal–Wallis. d Spearman’s coefficient. *p < 0.05; **p < 0.01; ***p < 0.001. a
Table 3 Multivariate linear regression analyses: PwD factors QoL-AD self ratings PwD factors
Age Self-rated health CDR BADLS CSDD RAID
B — 0.069 1.783 0.28 0.169 0.009
SE B
β
QoL-AD carer ratings 2
R
B
SE B
β
0.043 0.016
0.101* 0.034
0.033 0.088 0.065
0.415*** 0.233** 0.074
0.164 0.021 0.931 0.045 0.107 0.072
0.284** 0.175* 0.064 0.168 0.013
2
R
0.362 0.091 0.011 — 0.279 0.295 0.069
B, unstandardized coefficient; SE B, standard error of B; β, standardized coefficient; PwD, people with dementia; QoL-AD, Quality of Life in Alzheimer’s disease; CDR, Clinical Dementia Rating; BADLS, Bristol of Activities in Daily Living Scale; CSDD, Cornell Scale for Depression in Dementia; RAID, Rating of Anxiety in Dementia. *p < 0.05; **p < 0.01; ***p < 0.001.
younger age, with less depressive symptoms and lower dependence in ADLs, were rated by carers as having better QoL. Self-rated health by the PwD did not independently contribute to explaining carer-rated QoL. Copyright # 2014 John Wiley & Sons, Ltd.
Among the caregiver factors (Table 4), stress associated with caregiving was the dominant factor explaining self-rated QoL, after controlling for carer health and psychological distress, with higher levels Int J Geriatr Psychiatry 2015; 30: 97–104
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of stress associated with lower self-rated QoL. Carerrated QoL-AD scores were explained by stress specific to caregiving, carers’ self-rated health, and living with the PwD. The model accounted for 42% of the variance in carer-rated QoL (Table 4). Lower stress specific to caregiving, higher self-rated health, and living with the PWD were associated with higher QoL ratings in carers. Discussion The present study is the largest study to date comparing self and carer perceptions of QoL in PwD and the first to investigate whether self-rated health is associated with QoL ratings. As hypothesized, ratings of health by the PwD influenced perceptions of their QoL. After controlling for ADLs, and dementia severity, we found that perceptions of health were independently associated with QoL as rated by PwD. This is the first study to demonstrate that how PwD view their own health is an important determinant of their wellbeing. Current results demonstrate the importance of targeting self-rated health outcomes for PwD and accounting for their own views of their health in terms of determining QoL. Self-rated QoL was influenced by dementia severity, a variable that contributed to independent variance in the multiple regression analyses after accounting for self-rated health. Our findings therefore indicate that self-rated health status in PwD is a valid and independent measure (Walker et al., 2004). Our results showed that lower levels of carer-rated QoL are associated with greater dependence in ADLs, increasing age and a higher presence of depressive symptoms in PwD. These findings are in line with previous studies showing that carer-rated QoL is
associated with functional ability and clinical factors such as depression (Snow et al., 2005; Matsui et al., 2006; Conde-Sala et al., 2009). The finding that caregivers’ stress related to caregiving and living with the PwD is associated with carer QoL ratings is consistent with previous reports that strain in caregiving is associated with lower carer-rated QoL (Conde-Sala et al., 2009). Internal consistency for the QoL-AD was found to be acceptable for both self and carer ratings. Our findings therefore provide further support to suggestions in the literature that self and carer-rated QoL are two unique but equally valid constructs (Ready, et al., 2006). Contrary to prior studies (Sands et al., 2004), we observed that relationship characteristics influenced QoL ratings. Carers that lived with the PwD were more likely to rate their relative’s QoL higher. Carer-rated QoL was also influenced by whether the caregiver was a spouse or a child, whereby son/daughter caregivers scored PwD’s QoL lower as compared with spousal caregivers. It has been suggested that these observed differences are more likely to be associated with generational factors, emphasizing the important role of sociodemographic factors in perceptions of QoL in dementia (Conde-Sala et al., 2009). An important finding of our study is that stress arising from caregiving was significantly associated with lower QoL in self ratings by PwD. Carer stress therefore is inversely associated with both self and carer ratings of QoL in PwD, indicating that caregiver stress can influence QoL ratings. Nevertheless, results showed that there is still a large proportion of variance that remains unaccounted for self-rated QoL, indicating the need to include more variables in future analysis, such as behavioral and psychological symptoms or other measures of personal experience, in line with the multidimensional nature
Table 4 Multivariate linear regression analyses: caregiver factors QoL-AD self ratings Caregiver factors
Age Gender Living with the PwD Self-rated health GHQ RSS
B — — — 0.018 0.020 0.078
SE B
β
QoL-AD carer ratings 2
R
B
SE B
β
0.032
0.016 0.028 0.029
0.070 0.050 0.172*
R
2
0.417 0.021 0.377 4.122 0.030 0.050 0.397
0.026 0.577 0.801 0.015 0.030 0.031
0.039 0.028 0.253** 0.098* 0.062 0.677**
B, unstandardized coefficient; SE B, standard error of B; β, standardized coefficient; QoL-AD, Quality of Life in Alzheimer’s Disease; PwD, people with dementia; GHQ, General Health Questionnaire; RSS, Relative’s Stress Scale. *p < 0.05; **p < 0.001;
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of QoL. The QoL-AD measures “perceived QoL” (Logsdon et al., 2002); therefore, self-rated QoL-AD scores may be more closely related to other self-report measures as opposed to carer-rated measures of related domains of QoL in PwD. The present findings need to be considered within the context of several limitations. All of the PwD included in this study had mild or moderate dementia; therefore, the present findings are not generalizable to people with severe dementia. In addition, our findings in relation to carer ratings of QoL may not be generalizable to all caregivers, as all of the participants interviewed were family carers and were not paid for their provision of care. Conclusion Perceptions of QoL differ between ratings of carers and PwD. Our findings show that after controlling for affective symptoms and ADLs in self-rated QoL, self-rated health has the largest impact in shaping how PwD view their QoL. In addition, carers’ selfrated health was associated with carer-rated QoL. In conclusion, the present study demonstrates that selfrated health reported by PwD and their family carers provides additional valuable information in identifying determinants of QoL in dementia. Conflict of interest None declared. Key points
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Self-rated health in people with dementia and their carers influences ratings of QoL. Self-rated health is an important influence on QoL in this population.
Acknowledgements The authors would like to thank all of the people with dementia and their families who participated in the REMCARE study. This project was funded by the National Institute for Health Research Health Technology Assessment (NIHR HTA) program (project number 06/304/229) and has been published in full in Health Technology Assessment (ISRCTN42430123). The grant holders were Bob Woods (Bangor), Errollyn Bruce (Bradford), Rhiannon Tudor Edwards (Bangor), John Copyright # 2014 John Wiley & Sons, Ltd.
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Keady (Manchester), Esme Moniz-Cook (Hull), Martin Orrell (UCL), and Ian Russell (Swansea). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA program, NIHR, NHS, or the Department of Health.
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Shankar KK, Walker M, Frost D, Orrell MW. 1999. The development of a valid and reliable scale for rating anxiety in dementia (RAID). Aging MentHealth 3: 39–49. Sheehan BD, Lall R, Stinton C, et al. 2012. Patient and proxy measurement of quality of life among general hospital in-patients with dementia. Aging Ment Health 16: 603–607. Snow AL, Dani R, Souchek J, et al. 2005. Comorbid psychosocial symptoms and quality of life in patients with dementia. Am J Geriatr Psychiatry 13: 393–401. Sousa MF, Santos RL, Arcoverde C, et al. 2013. Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr 25: 1097–1105. Vogel A, Mortensen EL, Hasselbalch SG, Andersen BB, Waldemar G. 2006. Patient versus informant reported quality of life in the earliest phases of Alzheimer’s disease. Int J Geriatr Psychiatry 21: 1132–1138. Walker JD, Maxwell CJ, Hogan DB, Ebly EM. 2004. Does self-rated health predict survival in older persons with cognitive impairment? J Am Geriatr Soc 52: 1895–1900. Wolak A, Novella JL, Drame M, et al. 2009. Transcultural adaptation and psychometric validation of a French-language version of the QoL-AD. Aging Ment Health 13: 593–600. Woods RT, Bruce E, Edwards RT, et al. 2012. REMCARE: reminiscence groups for people with dementia and their family caregivers – effectiveness and cost-effectiveness pragmatic multicentre randomised trial. Health Technol Assess 16: v-xv, 1–116.
Supporting information Additional supporting information may be found in the online version of this article at the publisher’s web site.
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Self and carer perspectives of quality of life in dementia using the QoL-AD Vasiliki Orgeta1, Martin Orrell1, Barry Hounsome2, Bob Woods3 and in collaboration with the REMCARE team 1
Division of Psychiatry, University College London, London, UK Faculty of Health Sciences, University of Southampton, Southampton, UK 3 DSDC Wales, Bangor University, Bangor, UK Correspondence to: V. Orgeta, E-mail: [email protected] 2
Objective: Quality of life (QoL) is one of the most important outcomes in improving well-being in people with dementia (PwD). The primary aim of the present study was to compare self and carer ratings of QoL in PwD and to identify the most important factors influencing self and carer ratings. Methods: We conducted a cross-sectional analytic study of 488 dyads using the Quality of Life in Alzheimer’s Disease scale, demographics, data on self-rated health, and clinical characteristics. Results: Higher levels of self-rated health in PwD were associated with higher self-rated QoL after controlling for depression and activities of daily living. When the carer experienced less stress related to caregiving, the PwD reported better QoL. Higher carer-rated QoL was associated with less carer stress, better health for the family carer, and the PwD being of younger age. When carers lived with the PwD, and reported lower levels of depression and better functional ability for their relative, carer-rated QoL was higher. Conclusions: The self-rated health of PwD and carers influences the ratings they make of the QoL of the PwD indicating that it is an important influence on QoL in this population. Copyright # 2014 John Wiley & Sons, Ltd. Key words: quality of life; dementia; self-rated QoL; dementia caregivers; self-rated health History: Received 24 October 2013; Accepted 26 March 2014; Published online 2 May 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4130
Maintaining or improving quality of life (QoL) in people with dementia (PwD) is currently a key outcome of health services and of the increasing number of psychosocial interventions targeting this population (Moniz-Cook et al., 2008). Defining and systematically measuring QoL for PwD is becoming an increasingly important research objective, where the importance of the person’s subjective experience in evaluating the impact of dementia is emphasized (Novella et al., 2001). As a result, recent research in the area has tried to identify which measures are the most valid and which factors influence QoL ratings in PwD (Bryan et al., 2005; Matsui et al., 2006). Overall, the consensus from studies investigating agreement between self-rated and proxy-rated QoL (Logsdon et al., 2002; Vogel et al., 2006) is that PwD rate their QoL higher as compared with caregivers or Copyright # 2014 John Wiley & Sons, Ltd.
other informants (Hoe et al., 2007; Conde-Sala et al., 2009), raising questions about the level of agreement between self and carer ratings (Logsdon et al., 1999; Conde-Sala et al., 2009). Although most studies examining discrepancies between self and carer ratings use the Quality of Life in Alzheimer’s Disease (QoLAD) scale, other QoL measures have also been used, such as the Dementia Quality of Life instrument (Ready et al., 2006), the Nottingham Health Profile (Boyer et al., 2004), the EuroQol EQ-5D (Bryan et al., 2005), or the Duke Health Profile (Novella et al., 2001). Most of the studies have been conducted in community settings and less in PwD living in institutional care with the majority comparing self-rated versus carer-rated QoL as opposed to composite scores (Supporting information). Higher self-rated QoL is associated with lower levels of depression (Logsdon et al., Int J Geriatr Psychiatry 2015; 30: 97–104
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2002; Snow et al., 2005; Bosboom et al., 2012), decreased presence of neuropsychiatric symptoms (Matsui et al., 2006; Gomez-Gallego et al., 2012), lower dependence in activities of daily living (ADLs; Nakanishi et al., 2011; Conde-Sala et al., 2013), and in some studies, better cognitive function (Matsui et al., 2006; Conde-Sala et al., 2013; Crespo et al., 2013). Self ratings of QoL are higher among those reporting high levels of education (Logsdon et al., 1999; Huang et al., 2009; Karttunen et al., 2011) and those taking acetylcholinesterase inhibitors (Hoe et al., 2007; Bosboom et al., 2012) and inversely associated with awareness of deficits (Bosboom et al., 2012; Conde-Sala et al., 2013; Sousa et al., 2013), experience of pain (Snow et al., 2005; Beer et al., 2010), and presence of burden in family caregivers (Logsdon et al., 2002; Conde-Sala et al., 2009) or caregivers’ depressive symptoms (Logsdon et al., 1999; Snow et al., 2005). Similarly to self ratings, carer ratings are strongly influenced by the PwD’s ADLs (Gomez-Gallego et al., 2012) and cognition (Snow et al., 2005; Beer et al., 2010; Bosboom et al., 2012), with lower carer ratings associated with greater dependence and lower cognitive scores. Presence of depression (Fuh and Wang, 2006; Hoe et al., 2007; Conde-Sala et al., 2013), neuropsychiatric symptoms (Conde-Sala et al., 2009; Wolak et al., 2009; Nakanishi et al., 2011), and experience of burden (Conde-Sala et al., 2009; Wolak et al., 2009; Black et al., 2012) or depression in the family carer (Logsdon et al., 1999; Logsdon et al., 2002; Snow et al., 2005; Karttunen et al., 2011) also appear to be strongly adversely related to carer-rated QoL. Carer ratings are lower as apathy (Hurt et al., 2008; Leon-Salas et al., 2011; Nakanishi et al., 2011) and dementia severity increases (Nakanishi et al., 2011; Sheehan et al., 2012) and if carers rate their own QoL less positively (Conde-Sala et al., 2009). Despite however recent research growth on this topic, some findings remain contradictory. For example, whereas several studies report that dementia severity influences both carer and self ratings (Ready et al., 2002; Snow et al., 2005), others do not find such an association (Novella et al., 2001; Bryan et al., 2005). Results are also inconsistent in relation to the influence of the type of the caregiving relationship and whether differences between child proxy-rated versus spouse proxy-rated QoL exist (Sands et al., 2004; Conde-Sala et al., 2009). An important limitation of previous research is that there are currently no studies that have investigated whether self-rated health is associated with self-rated QoL in PwD. Self-rated health provides a subjective weighting of health problems not captured by Copyright # 2014 John Wiley & Sons, Ltd.
objective health measures (Kiecolt-Glaser and Glaser, 2002), which although related to QoL is a different construct, capturing an individual’s mental representations of their own personal health (Idler and Benyamini, 1997; Bailis et al., 2003). A number of studies have documented the predictive significance of self-rated health, for outcomes such as mortality and psychological wellbeing (Knauper and Turner, 2003). For example, those reporting their health as “poor” or “fair” have higher mortality compared with those that report their health as “good” or “excellent” (Idler and Benyamini, 1997), including older people with cognitive impairment (Walker et al., 2004). Comparing self reports with carer ratings is necessary to determine the feasibility and potential limitations of using proxies as a substitute of self-rated QoL. As is indicated by previous research, more evidence is necessary to specify the most important factors influencing self-rated and carer-rated QoL in PwD. The primary aim of this study was to determine if self-rated health of PwD and their carers will be independently associated with QoL ratings after controlling for demographic and clinical factors, by including PwD’s and carers’ ratings of their own health. Methods The sample consisted of 488 people with a diagnosis of dementia according to DSM-IV criteria, along with their informal caregivers. An informal caregiver was defined as a person who had regular contact with the PwD (for 4 h per week) and was assisting the person with basic and instrumental activities. All of the participants were seen as outpatients in the National Health Service in several areas of the UK. The present data were collected as part of the REMCARE study, investigating the effects of reminiscence therapy in people with dementia and their family caregivers (Woods et al., 2012). All people with dementia and their carers gave their consent to participate in the study. The assessment instruments were administered by a team of research assistants. The study was approved by the Multi-Centre Research Ethics Committee in Wales. Measures
•
The QoL-AD (Logsdon et al., 1999) scale was administered to PwD. Caregivers completed the scale as a self-report instrument. The QoL-AD comprises 13 items that assess several domains of QoL. Responses are rated from 1 (poor) to 4 (excellent), and higher ratings indicate better QoL (range of scores Int J Geriatr Psychiatry 2015; 30: 97–104
Quality of life in dementia
•
• • •
•
•
•
13–52). In cases where one or two items were missing, the mean QoL-AD item score was calculated, and this value was substituted for the missing items (Logsdon et al., 2002). For a total of 25 participants, more than two QoL items were missing, and these participants were excluded from further analyses. A total of 463 matched scores remained and were included in the final analyses. Cronbach’s alpha for self-rated QoLAD was α = 0.81 and for carer ratings α = 0.84. Depression for people with dementia was measured by the Cornell Scale for Depression in Dementia (Alexopoulos et al., 1988), a 19-item intervieweradministered measure, using information from interviewing the PwD and their carer, with scores >7 considered as suggestive of significant depressive symptomatology. Anxiety was measured by the Rating of Anxiety in Dementia Scale (Shankar et al., 1999), which comprises 18 items assessing anxiety based on a structured interview with the carer and the PwD. Scores of 11 or above indicate clinically significant anxiety. The Bristol Activities of Daily Living Scale (Bucks et al., 1996) has been developed specifically for use with PwD, as a carer-rated instrument consisting of 20 daily-living abilities, where higher scores indicate lower levels of ADLs (scores range from 0 to 60). Dementia severity was assessed by the Clinical Dementia Rating (CDR) scale (Morris, 1993), administered as a structured interview collecting information from both the informant and the PwD. The CDR provides a global rating of dementia, with CDRs of 0, 0.5, 1, 2, and 3 indicating no, questionable/very mild, mild, moderate, and severe dementia, respectively. Self-rated health was measured by the Visual Analogue Scale (EQ-VAS) of the EQ-5D, commonly used to measure self-reported health status (EuroQoL, 1990). The EQ-VAS records the respondent’s selfrated health on a vertical, VAS (with 0 representing worst imaginable health and 100 representing best imaginable health), providing a quantitative measure of health outcome as judged by the individual respondents. The EQ-VAS has been used often in measuring self-rated health in people with chronic disease (Hayes et al., 2008). Caregiver’s mental health was measured using the General Health Questionnaire (GHQ-28; Goldberg and Hillier, 1979), used widely to assess psychological well-being in carers. We used the 4-point Likert type scale (ranging from 0 to 3), where a higher score indicates more distress for carers. Stress specific to the caregiving situation was measured by the Relative’s Stress Scale (RSS; Greene et al., 1982), administered as a self-report measure,
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asking carers to complete 15 five-point Likert items, (ranging from 0 to 4). A higher score indicates higher stress specific to caregiving. Statistical analysis
We used nonparametric Mann–Whitney U and Kruskal– Wallis tests to analyze the relationships between the scores of PwD and their family caregivers on the QoLAD and the sociodemographic and clinical variables. The correlations used were Pearson’s for continuous variables and Spearman’s for discontinuous variables. To determine the effect of clinical variables on the perception of QoL in PwD and carers, multivariate regression analyses were performed. Self and carer ratings on the QoL-AD were entered as the dependent variables, whereas the predictors were those factors found to be significant in the correlational analyses. As the QoL-AD has an item asking PwD to self-rate their physical health, we controlled for this overlap by removing the relevant item and performing analyses using a 12-item version of the questionnaire. Results Demographic data
A total of 488 PwD were interviewed, of whom 49.6% were women. The mean age was 77.6 years (range 54–95), and the mean years of age leaving school was 15.5 years. A total of 399 PwD (82.3%) lived in the community with their family caregiver, whereas the rest of the sample lived in the community on their own or with other family members. Of the 488 PwD, 72.1% were married, and the remaining 27.9% were single, separated, widowed, or divorced. A total of 67.1% of the sample of caregivers were female, where 71% of caregivers were the PwDs’ spouse, 20.7% were the son or daughter of the PwD, and the remaining caregivers (8.3%) were another relative/friend or partner. The carers’ mean age was 69.8 years (range 23–91), and the mean years of age leaving school was 16.7 years. Clinical data
Of the PwD, 74.6% had a score of 1 (mild dementia) in the CDR scale, whereas the remaining sample had a score of 2 (moderate dementia). The mean Bristol Activities of Daily Living Scale score was 15.9 (SD = 9.6). The mean Cornell score was M = 7.0 (SD = 5.0) and for the Rating of Anxiety in Dementia Scale M = 8.5 Int J Geriatr Psychiatry 2015; 30: 97–104
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(SD = 7.1). Stress specific to the caregiving situation (RSS) was 21.6 (SD = 10.7), and the overall mean GHQ was 22.9 (SD = 11.8).
Factors associated with perception of quality of life in people with dementia and their carers
Levels of self-rated health were positively correlated with self-rated QoL. People with mild dementia rated their QoL higher as compared with those with moderate dementia. Higher scores on self-rated QoL were associated with lower depression and anxiety but higher ability in ADLs (Table 1). Younger age in PwD and higher self-rated health were associated with higher carer-rated QoL scores. Carers rated Pwd’s QoL as higher when the PwD was married or lived with a spouse. As with self ratings, higher carer-rated QoL was associated with greater levels of ADLs and lower levels of anxiety and depression (Table 1). Higher ratings of self-rated QoL were related to higher levels of family carer health (EQ-VAS) and lower levels of psychological distress (GHQ) and stress related to caregiving (Table 2).
For carer ratings, correlational analyses showed that women and those of younger age rated their relative’s QoL higher. Those that lived with the PwD and reported better health rated their relative’s QoL as better, as did carers who were spouses versus son/ daughter caregivers. Carers who were the sole caregiver and were providing more hours of every-day care to the PwD rated their relative’s QoL as lower. Higher scores in the GHQ and the RSS were associated with lower scores in carer ratings (Table 2).
Multivariate linear regression analysis
Regression analyses (Table 3) showed that after controlling for ADLs, ratings of anxiety and depression, self-rated health, and dementia severity were significant predictors of self-rated QoL in PwD, with the model accounting for 16% of the variance in self ratings. PwD with higher self-rated health and slower dementia severity reported better QoL. Levels of depression, age, and ADLs made an independent contribution in explaining carer ratings, with the model accounting for 36% of the total variance. Those of
Table 1 PwD factors and their relationship with self-rated and carer-rated QoL-AD scores QoL-AD self ratings
QoL-AD carer ratings
PwD factors M Agea Genderb Male Female Educationa Self-rated healtha Marital statusc Married Widowed Single Living statusc With spouse With relative Alone CDRb Mild Moderate CSDDd RAIDd BADLSd
SD
Statistic
M
SD
r = 0.060 z = 1.338
50.8% 49.2%
35.9 37.2
8.7 8.1
74.5% 21.2% 4.3%
34.9 34.2 34.0
4.9 4.7 4.8
χ = 2.597
71.2% 13.3% 15.5%
34.9 33.7 34.5
4.9 4.8 4.6
χ = 3.594
71.7% 24.9%
35.3 33.2
4.3 5.0
Statistic r = 0.160* z = 0.040
31.6 31.5
6.3 6.5
2
32.2 29.2 32.3
6.2 6.6 7.8
χ = 18.063**
2
32.3 29.7 29.9
6.1 7.3 6.6
χ = 11.187*
z = 2.706*
31.3 29.8
6.4 6.7
z = 1.569
r = 0.027 r = 0.353**
r = 0.216** r = 0.194** r = 0.154**
r = 0.055 r = 0.175** 2
2
r = 0.450** r = 0.375** r = 0.517**
PwD, people with dementia; QoL-AD, Quality of Life in Alzheimer’s disease; CDR, Clinical Dementia Rating; CSDD, Cornell Scale for Depression in Dementia; RAID, Rating of Anxiety in Dementia; BADLS, Bristol of Activities in Daily Living Scale. a Pearson’s coefficient. b Mann–Whitney U test. c Kruskal–Wallis. d Spearman’s coefficient. *p < 0.01; **p < 0.001.
Copyright # 2014 John Wiley & Sons, Ltd.
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Table 2 Caregiver factors and their relationship with self-rated and carer-rated QoL-AD scores QoL-AD self ratings
QoL-AD carer ratings
Caregiver factors M
SD
Statistic
M
SD
Statistic
r = 0.081
Agea Genderb Male Female Educationa Self-rated healtha Marital statusc Married Widowed Single Family relationshipc Spouse Son/daughter Other Living with the PwDb Yes No Leaving relative alonec Not at all Up to half a day Up to a whole day Sole caregiverb Yes No GHQd RSSd
r = 0.157**
z = 0.643
67.5% 32.5%
37.1 37.5
5.4 5.3
88.45% 2.9% 8.6%
34.8 35.5 33.5
4.7 5.7 5.5
χ = 1.877
71.3% 19.9% 8.9%
34.9 34.0 33.5
4.9 4.2 5.4
χ = 5.124
82.2% 17.8%
34.8 34.6
4.4 4.9
21.6% 57.6% 20.8%
34.1 34.3 35.5
4.3 5.2 4.5
60.9% 39.1%
34.6 34.6
4.9 4.7
z = 3.464*
30.8 33.0
6.4 5.9
2
31.7 31.5 31.0
6.3 8.9 7.6
χ = 1.432
2
32.4 29.0 30.3
6.0 6.4 7.2
χ = 23.442***
z = 0.183
32.3 29.7
6.1 7.3
z = 3.174**
2
31.0 31.2 34.4
5.4 6.0 7.0
χ = 17.592***
z = 0.150
32.0 30.8
6.6 6.0
z = 2.048*
r = 0.009 r = 0.146**
χ = 2.985
r = 0.123* r = 0.191***
r = 0.026 r = 0.303*** 2
2
2
r = 0.335*** r = 0.620***
QoL-AD, Quality of Life in Alzheimer’s Disease; PwD, people with dementia; GHQ, General Health Questionnaire; RSS, Relative’s Stress Scale. Pearson’s coefficient. b Mann–Whitney U test. c Kruskal–Wallis. d Spearman’s coefficient. *p < 0.05; **p < 0.01; ***p < 0.001. a
Table 3 Multivariate linear regression analyses: PwD factors QoL-AD self ratings PwD factors
Age Self-rated health CDR BADLS CSDD RAID
B — 0.069 1.783 0.28 0.169 0.009
SE B
β
QoL-AD carer ratings 2
R
B
SE B
β
0.043 0.016
0.101* 0.034
0.033 0.088 0.065
0.415*** 0.233** 0.074
0.164 0.021 0.931 0.045 0.107 0.072
0.284** 0.175* 0.064 0.168 0.013
2
R
0.362 0.091 0.011 — 0.279 0.295 0.069
B, unstandardized coefficient; SE B, standard error of B; β, standardized coefficient; PwD, people with dementia; QoL-AD, Quality of Life in Alzheimer’s disease; CDR, Clinical Dementia Rating; BADLS, Bristol of Activities in Daily Living Scale; CSDD, Cornell Scale for Depression in Dementia; RAID, Rating of Anxiety in Dementia. *p < 0.05; **p < 0.01; ***p < 0.001.
younger age, with less depressive symptoms and lower dependence in ADLs, were rated by carers as having better QoL. Self-rated health by the PwD did not independently contribute to explaining carer-rated QoL. Copyright # 2014 John Wiley & Sons, Ltd.
Among the caregiver factors (Table 4), stress associated with caregiving was the dominant factor explaining self-rated QoL, after controlling for carer health and psychological distress, with higher levels Int J Geriatr Psychiatry 2015; 30: 97–104
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of stress associated with lower self-rated QoL. Carerrated QoL-AD scores were explained by stress specific to caregiving, carers’ self-rated health, and living with the PwD. The model accounted for 42% of the variance in carer-rated QoL (Table 4). Lower stress specific to caregiving, higher self-rated health, and living with the PWD were associated with higher QoL ratings in carers. Discussion The present study is the largest study to date comparing self and carer perceptions of QoL in PwD and the first to investigate whether self-rated health is associated with QoL ratings. As hypothesized, ratings of health by the PwD influenced perceptions of their QoL. After controlling for ADLs, and dementia severity, we found that perceptions of health were independently associated with QoL as rated by PwD. This is the first study to demonstrate that how PwD view their own health is an important determinant of their wellbeing. Current results demonstrate the importance of targeting self-rated health outcomes for PwD and accounting for their own views of their health in terms of determining QoL. Self-rated QoL was influenced by dementia severity, a variable that contributed to independent variance in the multiple regression analyses after accounting for self-rated health. Our findings therefore indicate that self-rated health status in PwD is a valid and independent measure (Walker et al., 2004). Our results showed that lower levels of carer-rated QoL are associated with greater dependence in ADLs, increasing age and a higher presence of depressive symptoms in PwD. These findings are in line with previous studies showing that carer-rated QoL is
associated with functional ability and clinical factors such as depression (Snow et al., 2005; Matsui et al., 2006; Conde-Sala et al., 2009). The finding that caregivers’ stress related to caregiving and living with the PwD is associated with carer QoL ratings is consistent with previous reports that strain in caregiving is associated with lower carer-rated QoL (Conde-Sala et al., 2009). Internal consistency for the QoL-AD was found to be acceptable for both self and carer ratings. Our findings therefore provide further support to suggestions in the literature that self and carer-rated QoL are two unique but equally valid constructs (Ready, et al., 2006). Contrary to prior studies (Sands et al., 2004), we observed that relationship characteristics influenced QoL ratings. Carers that lived with the PwD were more likely to rate their relative’s QoL higher. Carer-rated QoL was also influenced by whether the caregiver was a spouse or a child, whereby son/daughter caregivers scored PwD’s QoL lower as compared with spousal caregivers. It has been suggested that these observed differences are more likely to be associated with generational factors, emphasizing the important role of sociodemographic factors in perceptions of QoL in dementia (Conde-Sala et al., 2009). An important finding of our study is that stress arising from caregiving was significantly associated with lower QoL in self ratings by PwD. Carer stress therefore is inversely associated with both self and carer ratings of QoL in PwD, indicating that caregiver stress can influence QoL ratings. Nevertheless, results showed that there is still a large proportion of variance that remains unaccounted for self-rated QoL, indicating the need to include more variables in future analysis, such as behavioral and psychological symptoms or other measures of personal experience, in line with the multidimensional nature
Table 4 Multivariate linear regression analyses: caregiver factors QoL-AD self ratings Caregiver factors
Age Gender Living with the PwD Self-rated health GHQ RSS
B — — — 0.018 0.020 0.078
SE B
β
QoL-AD carer ratings 2
R
B
SE B
β
0.032
0.016 0.028 0.029
0.070 0.050 0.172*
R
2
0.417 0.021 0.377 4.122 0.030 0.050 0.397
0.026 0.577 0.801 0.015 0.030 0.031
0.039 0.028 0.253** 0.098* 0.062 0.677**
B, unstandardized coefficient; SE B, standard error of B; β, standardized coefficient; QoL-AD, Quality of Life in Alzheimer’s Disease; PwD, people with dementia; GHQ, General Health Questionnaire; RSS, Relative’s Stress Scale. *p < 0.05; **p < 0.001;
Copyright # 2014 John Wiley & Sons, Ltd.
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Quality of life in dementia
of QoL. The QoL-AD measures “perceived QoL” (Logsdon et al., 2002); therefore, self-rated QoL-AD scores may be more closely related to other self-report measures as opposed to carer-rated measures of related domains of QoL in PwD. The present findings need to be considered within the context of several limitations. All of the PwD included in this study had mild or moderate dementia; therefore, the present findings are not generalizable to people with severe dementia. In addition, our findings in relation to carer ratings of QoL may not be generalizable to all caregivers, as all of the participants interviewed were family carers and were not paid for their provision of care. Conclusion Perceptions of QoL differ between ratings of carers and PwD. Our findings show that after controlling for affective symptoms and ADLs in self-rated QoL, self-rated health has the largest impact in shaping how PwD view their QoL. In addition, carers’ selfrated health was associated with carer-rated QoL. In conclusion, the present study demonstrates that selfrated health reported by PwD and their family carers provides additional valuable information in identifying determinants of QoL in dementia. Conflict of interest None declared. Key points
• •
Self-rated health in people with dementia and their carers influences ratings of QoL. Self-rated health is an important influence on QoL in this population.
Acknowledgements The authors would like to thank all of the people with dementia and their families who participated in the REMCARE study. This project was funded by the National Institute for Health Research Health Technology Assessment (NIHR HTA) program (project number 06/304/229) and has been published in full in Health Technology Assessment (ISRCTN42430123). The grant holders were Bob Woods (Bangor), Errollyn Bruce (Bradford), Rhiannon Tudor Edwards (Bangor), John Copyright # 2014 John Wiley & Sons, Ltd.
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Keady (Manchester), Esme Moniz-Cook (Hull), Martin Orrell (UCL), and Ian Russell (Swansea). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA program, NIHR, NHS, or the Department of Health.
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Int J Geriatr Psychiatry 2015; 30: 97–104
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