C International Psychogeriatric Association 2015 International Psychogeriatrics (2016), 28:1, 83–92 doi:10.1017/S1041610215000757
Quality of life of institutionalized older adults by dementia severity ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Emilia Castro-Monteiro,1 Mohammed Alhayek-Aí,2 Alicia Diaz-Redondo,3 Alba Ayala,4 Carmen Rodriguez-Blazquez,5 Fermina Rojo-Perez,6 Pablo Martinez-Martin5 and Maria João Forjaz4, ∗ 1
Preventive Medicine Service. Hospital Universitario 12 de Octubre. Madrid, Spain Preventive Medicine Service. Complexo Hospitalario Universitario de A Coruña. Sergas, A Coruña, Spain 3 Preventive Medicine Service. Hospital General Universitario Gregorio Marañón. Madrid, Spain 4 National School of Public Health, Carlos III Institute of Health and REDISSEC, Carlos III Institute of Health. Madrid, Spain 5 National Centre of Epidemiology, Carlos III Institute of Health and CIBERNED, Carlos III Institute of Health. Madrid, Spain 6 Institute of Economics, Geography and Demography. Centre for Human and Social Sciences. Spanish National Research Council. Madrid, Spain. ∗ On behalf of the Spanish Research Group on quality of life and Ageing. 2
ABSTRACT
Background: The goal of the study was to analyze the factors associated with quality of life (QoL) in institutionalized older adults with dementia, based on self and proxy ratings, and if these characteristics differ by dementia severity. Methods: Cross-sectional study of 525 people with dementia (PwD) and their caregivers (professional or family caregivers). Two different QoL questionnaires, leading to three measures, were used: QoL in Alzheimer’s disease scale (QOL-AD), self and proxy-rated, and QoL in late-stage dementia scale (QUALID), proxyrated. Multivariate linear regression models were tested for each QoL measure and for mild/moderate and severe stages of dementia. Results: Multiple regression analyses showed a significant association between the three QoL measures and depression. Functional ability was significantly associated with QoL when assessed by proxy. Other factors such as education level, leisure activities and frequency of visits were significantly related with QOL-AD by proxy. The associated factors that differed by dementia severity were education level for moderate dementia, and frequency of visits and who answered the questionnaire (professional vs. family member) for severe dementia. Conclusions: QoL was consistently associated with depressive symptoms independently of the measures as well as functional ability and social leisure activities when the QoL questionnaire was rated by proxy. Treating depressive symptoms, increasing social activities and maintaining the functional ability may decrease the deterioration of QoL in institutionalized older adults with dementia. Key words: quality of life, dementia, institutionalized, associated factors
Introduction Dementia is a syndrome characterized by deterioration in cognitive abilities that impairs the successful performance of activities of daily living (Seeley and Miller, 2012). The most prevalent form of dementia is AD (accounting for more than 50% of dementia cases) (Seeley and
Correspondence should be addressed to: M. J. Forjaz, National School of Public Health and REDISSEC, Carlos III Institute of Health, Monforte de Lemos 5, 28029 Madrid, Spain. Phone: +34-91 822 2062; Fax: +34-91 387 7862. Email: [email protected]. Received 7 Jan 2015; revision requested 7 Feb 2015; revised version received 17 Apr 2015; accepted 21 Apr 2015. First published online 28 May 2015.
Miller, 2012). Memory disorders are identified as the most common cognitive symptom related to dementia. Internationally, approximately 35.6 million of people were diagnosed with moderate to severe dementia and one-third to one-half of PwD live in residential care with higher costs in some high-income countries (World Health Organization, 2012). Dementia presents with a prevalence of 61.7% in residential care facilities in Spain (López Mongil et al., 2009) and an estimated prevalence of 10.9% in central and north-eastern Spain using door-to-door surveys in communitydwelling people aged 70 or more (de Pedro-Cuesta et al., 2009).
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The report “Dementia: A Public Health Priority” (World Health Organization, 2012) indicates the need to implement, develop and strengthen health and social policies to promote social wellbeing and improve the QoL of PwD and their caregivers (Hughes et al., 1982). The World Health Organization (WHO) defines QoL as “the individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” QoL is a multidimensional construct that includes several areas: physical, psychological and social (WHOQOL Group, 1994). In this context, the study of QoL has become important to analyze the impact of dementia on the individual, which would help defining strategies aimed at alleviating the consequences of this condition (Lawton, 1994). Although the subjective components are fundamental to QoL measurement, it is difficult to obtain reliable self-assessments when the individual suffers from cognitive impairment, communication problems and lack of insight, as it occurs in the late dementia stages (Logsdon et al., 2002; Naglie et al., 2006). That is why the use of proxies for assessing the QoL of PwD has been justified. The proxy, to this purpose, may be a person who is in close contact with the PwD as, for example, the main caregiver at home or a professional caregiver. Some studies have demonstrated that proxies can provide important and valid information, and have shown a good correlation between self and proxy ratings, but they also have detected discrepancies. For example, caregivers’ evaluations indicate systematically worse QoL than selfevaluation (Crespo et al., 2012). Although PwD experience variations in QoL across the trajectory of the syndrome, there is evidence that they can communicate their preferences and have meaning in their lives when key factors related to QoL are addressed. Late dementia stages are especially problematic for QoL assessment, which explains why some studies evaluating QoL exclude people in this situation (Logsdon et al., 2002; Naglie et al., 2006). Also, contradictory results were obtained in these studies, which might be due to the use of different outcome measures. The novelty of this study lies in that we analyze these two aspects simultaneously: a sample of PwD with different dementia stages, using different outcome measures. Therefore, the present study aimed to analyze the characteristics of institutionalized PwD associated to QoL according to two assessment scales (QOL-AD and QUALID), and determining if these associated factors differ by dementia severity.
Methods Participants This study followed a cross-sectional, multi-center design. The inclusion criteria was: people aged 60 years or more diagnosed with dementia according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth revision, Task Force (DSM-IVTR) (American Psychiatric Association, 2000) classification, at any stage of dementia severity. Questionnaires without written informed consent were excluded from the study. A convenience sample of 525 PwD was taken from 14 residential care facilities across 10 Spanish provinces. The residential care facilities offer personalized services such as housing, food services, assistance with activities of daily living and recreational or green areas. These residences were public, private or mixed and were managed by two private companies of similar characteristics, who participated in the research project. Residents are included into a waiting list before going in a public residential care and they pay according to a sliding fee scale. In mixed institutions, some beds are publicly and others privately funded. Residential staff and nonprofessional caregivers with frequent close contact with the participant provided the information. In addition, QoL questionnaires were completed by PwD who were able to perform this task. Written informed consent was obtained from the PwD or their legal representatives. The study was approved by the Ethics Committee of the Institute of Health Carlos III, Madrid, Spain. Assessments The following socio-demographic characteristics were included: sex, age, the existence of children alive; and frequency of contact with family members, friends or neighbors (less or more than once a week). Leisure activities were classified as: active (physical exercise, dancing); passive (watching TV or listening music); cultural (painting, studying or playing a musical instrument); and social (such as going to church). Socio-demographic information was provided by a family or professional caregiver. Clinician-based measures were: Cornell depression scale (Lucas-Carrasco et al., 2013), Barthel Index (Cid-Ruzafa and Damian-Moreno, 1997), number of chronic health conditions, “MiniExamen Cognoscitivo” (MEC) (Lobo et al., 1999), and Clinical Dementia Rating (CDR) (Hughes et al., 1982). The QoL questionnaires were the QOL-AD (Logsdon et al., 2002; Leon-Salas et al., 2011) and the QUALID Scale (Garre-Olmo et al., 2010). All questionnaires were used in their Spanish cross-culturally validated versions.
Institutionalized older adults with dementia
The Cornell depression scale (Lucas-Carrasco et al., 2013) is a tool specifically developed to assess depression in PwD by proxy. Scores ࣙ 6 are indicative of a potential depressive disorder. The Barthel Index (Cid-Ruzafa and DamianMoreno, 1997) measures the capacity to carry out activities of daily living. The total score ranges from 0 (total dependence) to 100 (total independence). Ratings of 60 or less indicate severe dependence. The number of chronic health conditions was assessed through an adapted version of the Cumulative Illness Rating Scale for Geriatrics (FernandezMayoralas et al., 2007). The questionnaire inquires about the presence (yes/no) of 20 chronic medical conditions and one open option “others,” providing a sum score of all positive responses. When necessary, this total score was dichotomized according to the median (seven medical conditions in our sample). It was completed by healthcare staff of the residential setting, based on chart review and the clinical condition of the resident. Cognitive status was appraised using the MEC (Lobo et al., 1999). It consists of 23 questions scoring 35 as the maximum. A core of less than 23 was used as the cut-off point for cognitive impairment in a geriatric population, and 14 as the cut-off point for severe cognitive impairment. The CDR scale (Hughes et al., 1982) ranges from 0 (no impairment) to 3 (severe dementia) in six domains. Scores are combined to obtain a composite score classifying dementia severity in stages: 1 (mild), 2 (moderate) or 3 (severe). The QOL-AD is a specific instrument to assess QoL in people with AD (Logsdon et al., 2002; Leon-Salas et al., 2011), which is also suitable for dementia in general (Leon-Salas et al., 2011). It includes 13 items (physical health, energy, mood, living situation, memory, family, marriage, friends, self, ability to do chores, ability to do things for fun, money and life as a whole), rated from 1 (being poor) to 4 (being excellent). The sum score ranged from 13 to 52, where the smaller score indicated the worse QoL. In this study, the caregiver (family or professional) answered this questionnaire, as well as PwD in case their condition allowed it. The QUALID aims to measure QoL by proxy in people with severe dementia (GarreOlmo et al., 2010). The QUALID is composed of 11 items (smiles, appears sad, cries, has a facial expression of discomfort, appears physically uncomfortable, complaints, groans or screams, is irritable or aggressive, enjoys eating, touching or being touched, interacting or being with others, appears emotionally calm and comfortable), rating from 1 to 5, with lower scores representing better QoL.
85
Data analysis The main dependent variables were the two QoL questionnaires leading to three measures: QOLAD rated by the PwD (n = 208) and by proxy (n = 522) and QUALID (by definition rated by proxy, n = 518). The QoL measures were compared by socio-demographic and clinical characteristics, using the Student t-tests after checking for normality assumptions. To form groups with similar sample sizes, mild and moderate categories of the CDR were joined. In addition, Spearman rank correlation coefficient was used to study the magnitude of the association between the QoL measures and the following variables: Cornell depression scale, Barthel Index, number of chronic health conditions and MEC. The magnitude of the correlation was considered weak for r = 0.10–0.29, moderate for r = 0.30–0.49, and strong for r ࣙ0.50, in absolute values (Cohen, 1988). Three multivariate linear regression models were tested, one for each QoL measure, using the following independent variables: age (60–85 years or ࣙ86 years, according to the median), gender, marital status, education level, children alive, leisure activities, frequency of visits, who answered the questionnaire (family vs. professional), Cornell depression scale, Barthel Index, number of chronic health conditions and the CDR. Worked previously and MEC were not included, because they decreased the number of observations and the explained variance of the models. In addition, MEC presented collinearity with CDR. Also, with the aim of identifying the explanatory variables in the different stages of dementia, we performed linear regression models for QoL measures, as the dependent variables, one for each stage of CDR (mild/moderate and severe). The assumptions of linear regression (noncollinearity, linearity, homoscedasticity, normality and independence) were confirmed for all models. The statistical analyses were performed with the IBM SPSS 19 program.
Results The socio-demographic and clinical characteristics of the sample are shown in Table 1. Only 208 individuals out of 525 (39.61%) were able to answer QOL-AD by themselves, and they had less severe dementia than the rest of the PwD (16.41% and 83.59% severe dementia, respectively; p < 0.001). Almost 70% of the PwD had children alive, and 44.47% participated in some kind of passive leisure. The Cornell depression scale mean ± standard deviation values showed that participants had a
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Table 1. Socio-demographic, clinical characteristics and applied rating scales n (%) MEAN
± SD
......................................................................................................................................................
Age 60–85 years ࣙ86 years Sex (women) Marital status (without partner) Education (less than primary) Worked previously (Yes) People with children alive Leisure activities Active (Yes) Passive (Yes) Cultural (Yes) Social (Yes) Frequency of visits (
Quality of life of institutionalized older adults by dementia severity ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Emilia Castro-Monteiro,1 Mohammed Alhayek-Aí,2 Alicia Diaz-Redondo,3 Alba Ayala,4 Carmen Rodriguez-Blazquez,5 Fermina Rojo-Perez,6 Pablo Martinez-Martin5 and Maria João Forjaz4, ∗ 1
Preventive Medicine Service. Hospital Universitario 12 de Octubre. Madrid, Spain Preventive Medicine Service. Complexo Hospitalario Universitario de A Coruña. Sergas, A Coruña, Spain 3 Preventive Medicine Service. Hospital General Universitario Gregorio Marañón. Madrid, Spain 4 National School of Public Health, Carlos III Institute of Health and REDISSEC, Carlos III Institute of Health. Madrid, Spain 5 National Centre of Epidemiology, Carlos III Institute of Health and CIBERNED, Carlos III Institute of Health. Madrid, Spain 6 Institute of Economics, Geography and Demography. Centre for Human and Social Sciences. Spanish National Research Council. Madrid, Spain. ∗ On behalf of the Spanish Research Group on quality of life and Ageing. 2
ABSTRACT
Background: The goal of the study was to analyze the factors associated with quality of life (QoL) in institutionalized older adults with dementia, based on self and proxy ratings, and if these characteristics differ by dementia severity. Methods: Cross-sectional study of 525 people with dementia (PwD) and their caregivers (professional or family caregivers). Two different QoL questionnaires, leading to three measures, were used: QoL in Alzheimer’s disease scale (QOL-AD), self and proxy-rated, and QoL in late-stage dementia scale (QUALID), proxyrated. Multivariate linear regression models were tested for each QoL measure and for mild/moderate and severe stages of dementia. Results: Multiple regression analyses showed a significant association between the three QoL measures and depression. Functional ability was significantly associated with QoL when assessed by proxy. Other factors such as education level, leisure activities and frequency of visits were significantly related with QOL-AD by proxy. The associated factors that differed by dementia severity were education level for moderate dementia, and frequency of visits and who answered the questionnaire (professional vs. family member) for severe dementia. Conclusions: QoL was consistently associated with depressive symptoms independently of the measures as well as functional ability and social leisure activities when the QoL questionnaire was rated by proxy. Treating depressive symptoms, increasing social activities and maintaining the functional ability may decrease the deterioration of QoL in institutionalized older adults with dementia. Key words: quality of life, dementia, institutionalized, associated factors
Introduction Dementia is a syndrome characterized by deterioration in cognitive abilities that impairs the successful performance of activities of daily living (Seeley and Miller, 2012). The most prevalent form of dementia is AD (accounting for more than 50% of dementia cases) (Seeley and
Correspondence should be addressed to: M. J. Forjaz, National School of Public Health and REDISSEC, Carlos III Institute of Health, Monforte de Lemos 5, 28029 Madrid, Spain. Phone: +34-91 822 2062; Fax: +34-91 387 7862. Email: [email protected]. Received 7 Jan 2015; revision requested 7 Feb 2015; revised version received 17 Apr 2015; accepted 21 Apr 2015. First published online 28 May 2015.
Miller, 2012). Memory disorders are identified as the most common cognitive symptom related to dementia. Internationally, approximately 35.6 million of people were diagnosed with moderate to severe dementia and one-third to one-half of PwD live in residential care with higher costs in some high-income countries (World Health Organization, 2012). Dementia presents with a prevalence of 61.7% in residential care facilities in Spain (López Mongil et al., 2009) and an estimated prevalence of 10.9% in central and north-eastern Spain using door-to-door surveys in communitydwelling people aged 70 or more (de Pedro-Cuesta et al., 2009).
84
E. Castro-Monteiro et al.
The report “Dementia: A Public Health Priority” (World Health Organization, 2012) indicates the need to implement, develop and strengthen health and social policies to promote social wellbeing and improve the QoL of PwD and their caregivers (Hughes et al., 1982). The World Health Organization (WHO) defines QoL as “the individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” QoL is a multidimensional construct that includes several areas: physical, psychological and social (WHOQOL Group, 1994). In this context, the study of QoL has become important to analyze the impact of dementia on the individual, which would help defining strategies aimed at alleviating the consequences of this condition (Lawton, 1994). Although the subjective components are fundamental to QoL measurement, it is difficult to obtain reliable self-assessments when the individual suffers from cognitive impairment, communication problems and lack of insight, as it occurs in the late dementia stages (Logsdon et al., 2002; Naglie et al., 2006). That is why the use of proxies for assessing the QoL of PwD has been justified. The proxy, to this purpose, may be a person who is in close contact with the PwD as, for example, the main caregiver at home or a professional caregiver. Some studies have demonstrated that proxies can provide important and valid information, and have shown a good correlation between self and proxy ratings, but they also have detected discrepancies. For example, caregivers’ evaluations indicate systematically worse QoL than selfevaluation (Crespo et al., 2012). Although PwD experience variations in QoL across the trajectory of the syndrome, there is evidence that they can communicate their preferences and have meaning in their lives when key factors related to QoL are addressed. Late dementia stages are especially problematic for QoL assessment, which explains why some studies evaluating QoL exclude people in this situation (Logsdon et al., 2002; Naglie et al., 2006). Also, contradictory results were obtained in these studies, which might be due to the use of different outcome measures. The novelty of this study lies in that we analyze these two aspects simultaneously: a sample of PwD with different dementia stages, using different outcome measures. Therefore, the present study aimed to analyze the characteristics of institutionalized PwD associated to QoL according to two assessment scales (QOL-AD and QUALID), and determining if these associated factors differ by dementia severity.
Methods Participants This study followed a cross-sectional, multi-center design. The inclusion criteria was: people aged 60 years or more diagnosed with dementia according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth revision, Task Force (DSM-IVTR) (American Psychiatric Association, 2000) classification, at any stage of dementia severity. Questionnaires without written informed consent were excluded from the study. A convenience sample of 525 PwD was taken from 14 residential care facilities across 10 Spanish provinces. The residential care facilities offer personalized services such as housing, food services, assistance with activities of daily living and recreational or green areas. These residences were public, private or mixed and were managed by two private companies of similar characteristics, who participated in the research project. Residents are included into a waiting list before going in a public residential care and they pay according to a sliding fee scale. In mixed institutions, some beds are publicly and others privately funded. Residential staff and nonprofessional caregivers with frequent close contact with the participant provided the information. In addition, QoL questionnaires were completed by PwD who were able to perform this task. Written informed consent was obtained from the PwD or their legal representatives. The study was approved by the Ethics Committee of the Institute of Health Carlos III, Madrid, Spain. Assessments The following socio-demographic characteristics were included: sex, age, the existence of children alive; and frequency of contact with family members, friends or neighbors (less or more than once a week). Leisure activities were classified as: active (physical exercise, dancing); passive (watching TV or listening music); cultural (painting, studying or playing a musical instrument); and social (such as going to church). Socio-demographic information was provided by a family or professional caregiver. Clinician-based measures were: Cornell depression scale (Lucas-Carrasco et al., 2013), Barthel Index (Cid-Ruzafa and Damian-Moreno, 1997), number of chronic health conditions, “MiniExamen Cognoscitivo” (MEC) (Lobo et al., 1999), and Clinical Dementia Rating (CDR) (Hughes et al., 1982). The QoL questionnaires were the QOL-AD (Logsdon et al., 2002; Leon-Salas et al., 2011) and the QUALID Scale (Garre-Olmo et al., 2010). All questionnaires were used in their Spanish cross-culturally validated versions.
Institutionalized older adults with dementia
The Cornell depression scale (Lucas-Carrasco et al., 2013) is a tool specifically developed to assess depression in PwD by proxy. Scores ࣙ 6 are indicative of a potential depressive disorder. The Barthel Index (Cid-Ruzafa and DamianMoreno, 1997) measures the capacity to carry out activities of daily living. The total score ranges from 0 (total dependence) to 100 (total independence). Ratings of 60 or less indicate severe dependence. The number of chronic health conditions was assessed through an adapted version of the Cumulative Illness Rating Scale for Geriatrics (FernandezMayoralas et al., 2007). The questionnaire inquires about the presence (yes/no) of 20 chronic medical conditions and one open option “others,” providing a sum score of all positive responses. When necessary, this total score was dichotomized according to the median (seven medical conditions in our sample). It was completed by healthcare staff of the residential setting, based on chart review and the clinical condition of the resident. Cognitive status was appraised using the MEC (Lobo et al., 1999). It consists of 23 questions scoring 35 as the maximum. A core of less than 23 was used as the cut-off point for cognitive impairment in a geriatric population, and 14 as the cut-off point for severe cognitive impairment. The CDR scale (Hughes et al., 1982) ranges from 0 (no impairment) to 3 (severe dementia) in six domains. Scores are combined to obtain a composite score classifying dementia severity in stages: 1 (mild), 2 (moderate) or 3 (severe). The QOL-AD is a specific instrument to assess QoL in people with AD (Logsdon et al., 2002; Leon-Salas et al., 2011), which is also suitable for dementia in general (Leon-Salas et al., 2011). It includes 13 items (physical health, energy, mood, living situation, memory, family, marriage, friends, self, ability to do chores, ability to do things for fun, money and life as a whole), rated from 1 (being poor) to 4 (being excellent). The sum score ranged from 13 to 52, where the smaller score indicated the worse QoL. In this study, the caregiver (family or professional) answered this questionnaire, as well as PwD in case their condition allowed it. The QUALID aims to measure QoL by proxy in people with severe dementia (GarreOlmo et al., 2010). The QUALID is composed of 11 items (smiles, appears sad, cries, has a facial expression of discomfort, appears physically uncomfortable, complaints, groans or screams, is irritable or aggressive, enjoys eating, touching or being touched, interacting or being with others, appears emotionally calm and comfortable), rating from 1 to 5, with lower scores representing better QoL.
85
Data analysis The main dependent variables were the two QoL questionnaires leading to three measures: QOLAD rated by the PwD (n = 208) and by proxy (n = 522) and QUALID (by definition rated by proxy, n = 518). The QoL measures were compared by socio-demographic and clinical characteristics, using the Student t-tests after checking for normality assumptions. To form groups with similar sample sizes, mild and moderate categories of the CDR were joined. In addition, Spearman rank correlation coefficient was used to study the magnitude of the association between the QoL measures and the following variables: Cornell depression scale, Barthel Index, number of chronic health conditions and MEC. The magnitude of the correlation was considered weak for r = 0.10–0.29, moderate for r = 0.30–0.49, and strong for r ࣙ0.50, in absolute values (Cohen, 1988). Three multivariate linear regression models were tested, one for each QoL measure, using the following independent variables: age (60–85 years or ࣙ86 years, according to the median), gender, marital status, education level, children alive, leisure activities, frequency of visits, who answered the questionnaire (family vs. professional), Cornell depression scale, Barthel Index, number of chronic health conditions and the CDR. Worked previously and MEC were not included, because they decreased the number of observations and the explained variance of the models. In addition, MEC presented collinearity with CDR. Also, with the aim of identifying the explanatory variables in the different stages of dementia, we performed linear regression models for QoL measures, as the dependent variables, one for each stage of CDR (mild/moderate and severe). The assumptions of linear regression (noncollinearity, linearity, homoscedasticity, normality and independence) were confirmed for all models. The statistical analyses were performed with the IBM SPSS 19 program.
Results The socio-demographic and clinical characteristics of the sample are shown in Table 1. Only 208 individuals out of 525 (39.61%) were able to answer QOL-AD by themselves, and they had less severe dementia than the rest of the PwD (16.41% and 83.59% severe dementia, respectively; p < 0.001). Almost 70% of the PwD had children alive, and 44.47% participated in some kind of passive leisure. The Cornell depression scale mean ± standard deviation values showed that participants had a
86
E. Castro-Monteiro et al.
Table 1. Socio-demographic, clinical characteristics and applied rating scales n (%) MEAN
± SD
......................................................................................................................................................
Age 60–85 years ࣙ86 years Sex (women) Marital status (without partner) Education (less than primary) Worked previously (Yes) People with children alive Leisure activities Active (Yes) Passive (Yes) Cultural (Yes) Social (Yes) Frequency of visits (
