Transcultural adaptation of a French version the quality of life in late-stage dementia (QUALID) scale for older adults with severe cognitive impairment: A preliminary study and research perspectives.

The aim of the study was to develop a cross-cultural adaptation and to evaluate the validity and reliability of a Spanish version of the Quality of Life in Late-Stage Dementia (QUALID) scale. Observational and cross-sectional validation study. The QUALID was translated according to standardised procedures. Internal consistency was assessed using Cronbach's alpha. The QUALID structure was assessed using a Principal Component Analysis (PCA). Inter-respondent (one rater asking two respondents) and inter-rater (two raters asking one respondent) reliability was assessed using the Intraclass Correlation Coefficient (ICC). The criterion validity (concurrent) was assessed by Spearman's correlation between the QUALID score and the QoL-Visual Analogue Scale (QoL-VAS) score. The construct validity (convergent) was assessed by Spearman's correlations between QUALID score and scores on the Pain-Visual Analogue Scale (Pain-VAS), on the Mini-Mental State Examination (MMSE) and on the Neuropsychiatric Inventory-Nursing Home (NPI-NH). A total of 160 elderly residents and 152 respondents at 8 long-term care centres in the province of Girona (Spain) participated in the study. Results showed satisfactory levels of internal consistency (Cronbach's alpha coefficients 0.74) and evidenced the multidimensionality of the scale. Three factors were identified (behavioural signs of discomfort, behavioural signs of social interaction and signs of negative affective mood). Acceptable inter-respondent reliability (ICC = 0.74) and high inter-rater reliability (ICC = 0.95) were found. The QUALID score was associated with the QoL-VAS score, suggesting a good concurrent criterion validity, and also with the Pain-VAS, the MMSE and the NPI-NH scores, suggesting good construct validity. Our evaluation of the psychometric properties of the Spanish version of the QUALID indicates that it is a reliable and valid instrument with an adequate capacity to distinguish between different clinical status.

Aim: To translate the Quality of Life in Late-Stage Dementia (QUALID) Scale into Norwegian, and to evaluate the test-retest reliability and validity of the scale. Method: QUALID was translated according to standardised procedures. Residents with dementia living in nursing homes were included in the study and assessed using QUALID, Cornell Scale for Depression in Dementia, Neuropsychiatric Inventory, Physical Self-Maintenance Scale and Clinical Dementia Rating Scale. Results: Cronbach's α of QUALID was 0.79. In the reliability study, the intra-class correlation was 0.83. The validity study showed a strong association between depressive symptoms and QUALID, and a moderate association between QUALID and assessments of level of functioning and agitation. Conclusions: The Norwegian version of QUALID is a reliable and valid scale for assessing quality of life in nursing home residents with dementia.

Purpose: The aim of this study is to verify a cross-cultural adaptation of an Italian version of the Quality of Life in Late-Stage Dementia (QUALID) scale in a sample of aging people with intellectual disabilities (ID). Methods: The QUALID was translated according to standardized procedures. Internal consistency was analyzed using Cronbach?s alpha. A Principal Component Analysis verified its multidimensionality. Inter-rater and test-retest reliabilities were also assessed using the Intraclass Correlation Coefficient (ICC). Convergent validity was probed by Spearman?s correlations among the QUALID score and the six sub-scores of the Assessment for Adults with Development Disabilities (AADS), a proxy-based questionnaire rating behavioral excesses and deficits commonly found in people with intellectual disabilities and dementia. Clinical validity was assessed by comparing QUALID scores obtained by subjects with and without dementia using the Mann-Whitney U test. Results: A total of 40 adults/older people with ID at five ID-specific centers in the province of Trento and Cremona participated in the study. Findings show optimal levels of internal consistency (α = 0.80) and confirm the factors identified in the Spanish validation study (symptoms of discomfort, positive social interaction and depression). The scale has high inter-rater (ICC = 0.95) and good test-retest reliabilities (ICC = 0.89). The total QUALID score correlates significantly with the AADS sub-scores for behavioral excesses, but does not differ between individuals with and without dementia, though two out of the three identified factor scores are significantly higher in the dementia subgroup. Conclusions: The Italian version of the QUALID is a reliable and valid instrument for estimating quality of life in aging adults with ID and dementia.

ABSTRACTObjectives: The study aimed to assess the psychometric properties of the Czech versions of the Quality of Life in Late-Stage Dementia (QUALID) and the Cognitively Impaired Life Quality (CILQ) scales for use in the palliative care setting in terminally ill patients with cognitive impairment.Methods: The sample comprised 306 cognitively impaired inpatients with advanced cancer and non-cancer conditions. In this cross-sectional study, two Quality of Life (QoL) measurements were performed at baseline and after five days. The dimensionality of the QUALID and CILQ scales was evaluated using a principal component analysis with Varimax rotation. Reliability was assessed using Cronbach's alpha; inter-rater reliability was evaluated with Kappa index. Test–retest stability was calculated using the intraclass correlation coefficients (ICCs) comparing scores from baseline and 3–5 days post-baseline. The construct validity of the QUALID and CILQ scale was established by Spearman's correlation coefficients with the Symptom Management at the End-of-Life in Dementia (SM-EOLD).Results: Both scales were shown to have adequate validity and reliability (Cronbach's α = 0.812 for QUALID, and α = 0.73 for CILQ), good inter-rater agreement (QUALID: κ = 0.760; CILQ: κ = 0.801) as well as test–retest reliability (QUALID: ICC = 0.847; CILQ: ICC = 0.925).Conclusion: The Czech versions of the QUALID and CILQ scales may be recommended for use in the Czech Republic in the area of palliative care.

Aims: To investigate which factors the Quality of Life in Late-Stage Dementia (QUALID) scale holds when used among people with dementia (pwd) in nursing homes and to find out how the symptom load varies across the different severity levels of dementia. Methods: We included 661 pwd [mean age ± SD, 85.3 ± 8.6 years; 71.4% women]. The QUALID and the Clinical Dementia Rating (CDR) scale were applied. A principal component analysis (PCA) with varimax rotation and Kaiser normalization was applied to test the factor structure. Nonparametric analyses were applied to examine differences of symptom load across the three CDR groups. Results: The mean QUALID score was 21.5 (±7.1), and the CDR scores of the three groups were 1 in 22.5%, 2 in 33.6% and 3 in 43.9%. The results of the statistical measures employed were the following: Crohnbach's α of QUALID, 0.74; Bartlett's test of sphericity, p <0.001; the Kaiser-Meyer-Olkin measure, 0.77. The PCA analysis resulted in three components accounting for 53% of the variance. The first component was ‘tension' (‘facial expression of discomfort', ‘appears physically uncomfortable', ‘verbalization suggests discomfort', ‘being irritable and aggressive', ‘appears calm', Crohnbach's α = 0.69), the second was ‘well-being' (‘smiles', ‘enjoys eating', ‘enjoys touching/being touched', ‘enjoys social interaction', Crohnbach's α = 0.62) and the third was ‘sadness' (‘appears sad', ‘cries', ‘facial expression of discomfort', Crohnbach's α 0.65). The mean score on the components ‘tension' and ‘well-being' increased significantly with increasing severity levels of dementia. Conclusion: Three components of quality of life (qol) were identified. Qol decreased with increasing severity of dementia.

The aim of the present study was to evaluate the validity, reliability and responsiveness of a Swedish translation of the Quality of Life in Late-Stage Dementia (QUALID) Scale. A total of 169 elderly residents at 19 dementia special care units in eight long-term care facilities in the Gothenburg city region participated in the study. Assessments were made by 107 proxy informants. Results showed satisfactory levels of internal consistency reliability (Cronbach's alpha coefficients 0.74), acceptable inter-rater reliability between informants (0.69), and high test-retest reliability (0.86). As hypothesized, QUALID scores were also associated with those from other quality-of-life (QoL) indices (criterion validity), as well as with use of psychoactive drugs, and with tests of cognitive impairment (clinical validity). The responsiveness of the questionnaire was also acceptable. As important clinical decisions may derive from perceived QoL effects, it is vital that the QoL data be reliable, valid and sensitive to change. Our evaluations of the psychometric properties of the Swedish QUALID indicate that it satisfactorily meets the need for an instrument to assess QoL in late-stage dementia in Sweden, in a wide range of settings and applications.

BackgroundThis study aimed to determine whether the Quality of Life in Late-Stage Dementia (QUALID) scale is responsive to changes in behaviour due to therapeutic intervention.Method31 long-term care residents with moderate to severe AD and agitation/aggression entered a three-month, open-label trial of memantine 10 mg BID. The relationships between the QUALID and BPSD, global improvement, and cognition at baseline and endpoint, as well as the changes in these scales as a result of treatment, were examined.ResultsDespite a significant improvement in agitation and aggression (NPI agitation, F3,90 = 3.721, p =.014; CMAI total, F3,90 = 6.301, p =.001) and overall behaviour (NPI total, F3,90 = 4.035, p =.010), there was no significant change in QUALID score (t30 = −0.278, p =.783). The QUALID was correlated with NPI at baseline (τ = 0.270, p =.037) and endpoint (τ = 0.404, p =.002), but change scores were not correlated (τ = 0.107, p =.412).ConclusionWhile the QUALID correlates with behavioural measures at single time points, it does not appear to correlate with changes longitudinally associated with treatment.

AG 3: A COMPARATIVE COST ANALYSIS OF ALZHEIMER'S DISEASE VERSUS VASCULAR DEMENTIA

This study tested the psychometric properties of the Quality of Life in Late-Stage Dementia (QUALID) Scale using Rasch analysis. The QUALID includes 11 items with a 5-point response scale. Scores range from 11 to 55, and lower scores indicate higher quality of life (QoL). Baseline data from a randomized clinical trial including 137 residents from 14 nursing homes were used. Psychometric testing included item mapping, evaluation of response categories, item reliability, construct validity based on INFIT and OUTFIT statistics, and convergent validity based on correlations between QoL and pain, agitation, depression, and function. The Cronbach α was .89. All the items except "appears physically uncomfortable" fit the model. There was a significant relationship between QoL and depressive symptoms ( r = .71, P = .001), pain ( r = .26, P = .01), physical function ( r = -.19, P = .03), and agitation ( r = .56, P = .001). The categories were appropriately used. Item mapping suggested a need for easier items.

BackgroundPain in nursing home (NH) residents with dementia is commonly reported and may affect Quality of Life (QoL) negatively. Few longitudinal studies have explored how pain and QoL develop in NH residents with dementia starting from their admission to the NH.AimThe aim was to explore pain, QoL, and the association between pain and QoL over time in persons with dementia admitted to a NH.MethodsA convenience sample, drawn from 68 non-profit NHs, included a total of 996 Norwegian NH residents with dementia (mean age 84.5 years, SD 7.6, 36.1% men) at NH admission (A1), with annual follow-ups for two years (A2 and A3). Pain and QoL were assessed using the Mobilization-Observation-Behavior-Intensity-Dementia-2 (MOBID-2) Pain Scale and the Quality of Life in Late-Stage Dementia (QUALID) scale, respectively, at all assessments. Severity of dementia, personal level of activities of daily living, general medical health, neuropsychiatric symptoms, and the prescription of psychotropic drugs and analgesics (opioids and/or paracetamol) were also assessed at all assessments.ResultsMean (SD) MOBID-2 pain intensity scores were 2.1 (2.1), 2.2 (2.2), and 2.4 (2.1) at A1, A2, and A3, respectively. Participants who were prescribed analgesics had higher pain intensity scores at all assessments than participants not prescribed analgesics. The mean (SD) QUALID scores at each assessment were 19.8 (7.1), 20.8 (7.2), and 22.1 (7.5) at A1, A2, and A3, respectively. In the adjusted linear mixed model, higher pain intensity score, prescription of opioids, and prescription of paracetamol were associated with poorer QoL (higher QUALID total score and higher scores in the QoL dimensions of sadness and tension) when assessed simultaneously. No time trend in QoL was found in these adjusted analyses.ConclusionNH residents with dementia who have higher pain intensity scores or are prescribed analgesics are more likely to have poorer QoL. Clinicians, NH administrators, and national healthcare authorities need to look into strategies and actions for pharmacological and non-pharmacological pain treatment to reduce pain intensity while simultaneously avoiding negative side effects of pain treatment that hamper QoL.

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.

BackgroundThe quality of life (QoL) of long-term care residents with advanced dementia represents a critical concern. However, empirical data on this topic especially within Chinese society remains relatively scarce.AimsThis study aimed to investigate the QoL in this population and identify the key factors affecting it.MethodsA cross-sectional study employing cluster sampling methodology was carried out in three long-term care facilities in Macao, involving a sample of 81 residents. The participants were assessed using the Functional Assessment Staging Test (FAST) and the Quality of Life in Late-Stage Dementia (QUALID) scale. Other variables recorded included Behavioral and Psychological Symptoms of Dementia (BPSD), comorbidities, PAINAD scores, and Waterlow scores.ResultsThe majority of participants were female (65.4%), and 70.1% were classified at Stage 7 on the FAST scale. The mean score on the QUALID was 23.94 ± 7.58, suggesting a relatively lower QoL in Macao, particularly in items of smiling, interaction, and touch. Multiple linear regression analysis indicated that higher PAINAD scores, presence of BPSD, and higher FAST stage were significantly associated with lower quality of life among long-term care residents with advanced dementia, explaining 65.9% of the total variance (F = 36.639, p < 0.001).ConclusionsThe findings indicated that residents with advanced dementia in Macao experience relatively lower quality of life, particularly in aspects such as smiling, interaction, and touch. Pain, BPSD, and advanced dementia stage are the three major associated factors of QoL among long-term care residents with advanced dementia. Comprehensive and individually tailored care strategies focusing on pain management and interventions targeting BPSD are suggested to enhance QoL in this population.

Background:Anxiety and depression are highly prevalent among people with dementia (PWD), and has many negative outcomes, such as increased behavioral problems, decreased ability to live independently, and increased risk of nursing home placement, which may affect the person’s quality of life (QoL). Many cross-sectional studies have investigated factors associated with QoL in PWD in nursing homes, but few longitudinal studies have investigated how anxiety and depression affect the course of QoL of PWD in nursing homes. This study aimed to explore the association between QoL and anxiety, depression, and comorbid anxiety and depression in PWD in nursing homes at a 12-month follow-up.Methods:In all, 298 PWD ≥ 65 years old from 17 Norwegian nursing homes were assessed with Norwegian version of the Rating Anxiety in Dementia scale (RAID-N). Anxiety was defined as RAID-N score ≥ 12. QoL was assessed by Quality of Life in Late-Stage Dementia (QUALID) scale. Depression was assessed by the Cornell scale of depression in dementia (CSDD), defined as CSDD score ≥ 10. The assessments were made at baseline and after a mean follow-up period of 350 days (SD 12.3). A growth mixture model revealed two distinct trajectories of QUALID scores. Participants’ characteristics and related risk factors associated to QUALID score trajectories were analyzed by logistic regression models.Results:In trajectory group 1 (206 participants), a lower proportion of participants had anxiety, and a more stable and better QoL, compared to trajectory group 2 (92 participants) with a higher proportion of participants with anxiety and poorer QoL at a 12-month follow-up. Participants with comorbid anxiety and depression had the worst QoL than the participants with only anxiety or only depression. Adjusted multivariate logistic regression analysis revealed that more severe impairment in activities of daily living, presence of anxiety, depression, agitation, and use of antipsychotics at baseline, were associated with belonging to the trajectory group with poor QoL.Conclusion:It is important among nursing home personnel to increase awareness of and skills in identifying anxiety and depression, and to initiate adequate management to enhance Qol of PWD in nursing homes.Note: The material was published in September 11, 2018 in Plos one.

AimTo investigate variables associated with change in quality of life (QOL), measured by QUALID scale and three subscales; tension, sadness and wellbeing, among dementia patients in nursing homes.MethodA 10 months follow-up study including 198 (female 156, 79%) nursing home patients, mean age 87 (s.d 7.7) years. Scales applied; quality of life in late stage dementia (QUALID) scale and three subscales (wellbeing, sadness and tension), neuropsychiatric inventory questionnaire 10 items (NPI-10-Q), clinical dementia rating (CDR) scale, physical self-maintenance (PSMS) scale and a scale of general medical health. Use of psychotropic medication, gender and age was collected from the patient's records.ResultsMean baseline QUALID score: 20.6 (s.d.7.0), follow-up score: 22.9 (s.d.7.4), mean change 2.8 (s.d.7.4). QOL improved in 30.8%, were unchanged in 14.7%, deteriorated in 54.6% of patients. A regression analysis revealed that change in QUALID score was significantly associated with: QUALID baseline score (beta -.381, p-value.000), change in NPI score (beta.421, p-value.000), explained variance 38.1%. Change in score on wellbeing subscale associated with: change in PSMS score (beta.185, p-value.019), wellbeing baseline score (beta -.370, p-value.000), change in NPI score (beta.186, p-value.017), explained variance 25.3%. Change in score on tension subscale associated with: change in CDR sum-of-boxes (beta.214, p-value.003), change in NPI score (beta.270, p-value.000), tension baseline score (beta -.423, p-value.000), explained variance 34.6%. Change in score on sadness subscale associated with: change in NPI score (beta.404, p-value.000), sadness baseline score (beta -.438, p-value.000), explained variance 38.8%.ConclusionThe results imply that a lower baseline score (better QOL) results in a larger change in QOL (towards worse QOL). Change in QOL is mostly associated with change in neuropsychiatric symptoms. In almost 50% of patients QOL did not deteriorate.

Introduction. Foreword. Part I: Introduction to the Dementias. Dementia and Alzheimer disease: ancient Greek medicine to modern molecular biology. Epidemiology and impact of dementia. Part II: Evaluation and Diagnosis of Dementia. Neuropsychiatric assessment and diagnosis. Medical evaluation and diagnosis. Neuropsychological assessment in dementia. Neuroimaging. Cognitive disorders as psychobiological processes. Part III: Alzheimer Disease and Other Dementias. Alzheimer disease. Mild cognitive impairment. Vascular cognitive disorder. Dementia with Lewy bodies and other synucleinopathies. Frontotemporal dementia. Traumatic brain injury. Other causes of dementia. Psychiatric disorders in people with dementia. Part IV: Treatment of Dementia. Pharmacologic treatment of neuropsychiatric symptoms. Behavioral and environmental management. Pharmacologic treatment of Alzheimer disease and mild cognitive impairment. Management of advanced dementia. Part V: Caregiving, Legal, and Ethical Issues. Supporting family caregivers. Legal issues. Ethical issues and patterns of practice. Part VI: Dementias: The Future. Biomarkers for the dementias. The molecular and genetic basis of Alzheimer disease. The future of dementia treatment. Prevention of dementia and cognitive decline. Appendixes. History form. Level of function scale. Mental status examination. Neurological examination. Alzheimer's disease cooperative study activities of daily living inventory. Neuropsychiatric inventory: community dwelling version. Agitated behavior in dementia scale. Quality of life in Alzheimer's disease scale. Quality of life in late-stage dementia (QUALID) scale. Resources. Index.