Quality Of Life In Late-Stage Dementia Research Articles

Pain and quality of life in nursing home residents with dementia after admission – a longitudinal study

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.

Pain in nursing home residents with dementia and its association to quality of life

Objectives We aimed to describe pain, use of analgesics and quality of life (QoL) in people with dementia admitted to a Norwegian nursing home (NH), and to explore if and how pain was associated with their QoL when adjusting for sociodemographic characteristics, other health conditions and use of analgesics. Method A total of 953 Norwegian NH residents with dementia (mean age 84.0, SD 7.5 years, 35.8% men) were included at admission to the NH. 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. Severity of dementia, personal level of activities of daily living, general medical health, neuropsychiatric symptoms, and the use of psychotropic drugs and analgesics were assessed. Results In total, 36% of the participants had clinically relevant pain intensity (MOBID-2 ≥ 3) and 52% received analgesics. Paracetamol was most frequently prescribed (45%). In an adjusted linear mixed model, more severe pain was associated with higher QUALID total scores, indicating poorer QoL (regression coefficient 0.52, 95% CI 0.36-0.69). Conclusion Pain prevalence at NH admission was high in residents with dementia; half used analgesics, particularly paracetamol. More severe pain was associated with poorer QoL when adjusting for sociodemographic characteristics, other health conditions, and use of analgesics. The routine assessment of pain at NH admission can uncover undiagnosed and untreated pain and allow for adequate non-pharmacological and pharmacological pain management and likely increased QoL.

Quality of Life in Advanced Dementia with Late Onset, Young Onset, and Very Young Onset.

Background:Advanced stages of dementia are characterized by severe cognitive and physical impairment. It has not yet been investigated whether persons with young onset dementia (YOD) and late onset dementia (LOD) differ in advanced disease stages.Objectives:To compare quality of life (QoL) between persons with advanced YOD and LOD; to explore the determinants of QoL; to investigate whether YOD and LOD differ with regard to symptoms and care.Methods:The study was performed in the context of EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of YOD and LOD in Germany). Persons with advanced dementia (PWAD) were assessed and caregivers were interviewed. QoL was measured with the proxy rating Quality of Life in Late Stage Dementia (QUALID) scale.Results:93 persons with YOD and 98 with LOD were included. No significant differences in QoL were detected. Determinants of QoL were similar in YOD and LOD. Behavioral and psychological symptoms of dementia (BPSD), suffering and other distressing symptoms were associated with a lower QoL. In YOD but not in LOD antipsychotic treatment was associated with low QoL. The group of persons who were younger than 65 years at the time of the study visit experienced significantly more distressing symptoms than older PWAD.Conclusion:Overall, persons with advanced YOD do not appear to be disadvantaged compared to old and oldest PWAD. Special attention, however, must be paid to the group of the very young persons who seem to be particularly vulnerable.

Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

A locally-adapted, multisensory, psychosocial intervention called Namaste Care program was developed to improve the daily life of persons with advanced dementia (PwAD) through arranging meaningful activities and physical interactions by healthcare staff (Namaste Carers). Congruent with Asian values, the families of PwAD were invited to participate in Namaste Care sessions. The study aimed to explore the influence of Namaste Care on cognitive status and quality of life (QOL) of PwAD, and perceptions and attitudes of caregivers and Namaste Carers toward dementia care were determined. A total of 10 individuals, including patient-caregiver dyads (n = 4) and Namaste Carers (n = 6) participated in a program in a tertiary hospital in Singapore. Quality of Life in Late-Stage Dementia (QUALID) scale and Severe Impairment Rating Scale (SIRS) were employed to evaluate QOL and cognition, respectively, in the pre- and post-survey program in patient-caregiver dyads. Namaste Carers’ knowledge and attitudes toward PwAD were assessed using the Questionnaire on Palliative Care for Advanced Dementia (qPAD). Caregivers and Namaste carers were interviewed post-program separately. A concurrent explanatory mixed-method analysis was done. The mean age of PwAD was 84 years, with 75% (n = 3) patients on enteral tube feeding. Namaste carers were nurses with an average experience of 4.1 years in dementia care. On comparison of pre- and post-program scores of PwAD, QUALID scores showed a decrease (indicating an improvement in the QOL), while the SIRS scores were increased (indicating an improved cognitive response). Namaste Carers scored high on qPAD, reflecting the good understanding and a positive attitude toward PwAD. Thematic analysis of 10 interview transcripts from caregivers and Namaste Carers revealed three themes: the polarizing paradigm of care in advanced dementia; pre-eminence of the Asian family values, and theme of “small actions make a big difference”. Namaste Care served as a bridge between the person-centered care approach and the biomedical model of dementia care. Namaste Care with family participation may be the cornerstone of PwAD to receive culturally-appropriate personalized care and serve as a premise for the operationalization of person-centered care in Asian societies, and undeniably across the world.

321 - Association between quality of life and anxiety, depression, and comorbid anxiety and depression in people with dementia in nursing homes: A 12-month follow-up study

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.

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial

BackgroundDementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia.MethodsNursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated.ResultsThe Namaste Care Family program was more effective than usual care in terms of QUALID (− 0.062, 95%CI: − 0.40 to 0.28), QALY (0.0017, 95%CI: − 0.059 to 0.063) and GAIN (0.075, 95%CI: − 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (− 552 €, 95%CI: − 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 €/unit of effect extra was 0.70 for the QUALID, QALY and GAIN.ConclusionsThe Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable.Trial registrationNetherlands Trial Register (http://www.trialregister.nl/trialreg/index.asp, identifier: NL5570, date of registration: 2016/03/23).

The Negative Impact of Psychotropic Drug Use on Quality of Life in Nursing Home Patients at Different Stages of Dementia: Cross-Sectional Analyses from the COSMOS Trial

ObjectivesThe quality of life (QoL) in nursing home (NH) patients with dementia is threatened by neuropsychiatric symptoms. This may trigger the use of psychotropic drugs, yet it is unknown if this practice improves the QoL. We investigated the association between the number of psychotropic drugs and QoL at different stages of dementia, adjusted for neuropsychiatric symptoms. DesignCross-sectional analysis of baseline data from the COSMOS study, a multicenter, cluster-randomized, single-blinded, controlled trial. Setting and ParticipationFour hundred thirty-one patients (aged ≥65 years) with and without dementia from 33 Norwegian NHs comprising 67 wards. MeasuresQoL assessed by Quality of Life in Late Stage Dementia (QUALID) and Quality of Life in Dementia (QUALIDEM), neuropsychiatric symptoms by Neuropsychiatric Inventory–Nursing Home version, and cognition by Mini-Mental State Examination. ResultsAt least 1 psychotropic drug was prescribed to 71% of the 431 participants included in the final sample. We estimated the trend in mean QoL scores over the number of psychotropic drugs in patients with clinical significant neuropsychiatric symptom load. QoL assessed by QUALID and QUALIDEM decreased by increasing number of psychotropic drugs (P < .001). No psychotropic drugs (mean QUALID score 20 ± 0.5, mean QUALIDEM score 40 ± 8.1) compared to ≥3 psychotropic drug (mean QUALID score 25 ± 7.8, mean QUALIDEM score 33 ± 8.0). This association was evident in mild, moderate, and severe dementia but absent in people without dementia. Use of antidepressant agents in mild and moderate dementia was associated with increased QoL compared with no use of antidepressant agents. Conclusions and ImplicationsOverall, our findings suggest that psychotropic drugs might pose a threat to QoL in NH patients at all stages of dementia, possibly with the exception of use of antidepressant agents in mild to moderate dementia. This underlines the need for updated knowledge on psychopharmacologic treatment and implementation of procedures for maintaining QoL in dementia care facilities.

Advanced dementia: an integrated homecare programme

ObjectivesWe established an integrated palliative homecare programme for advanced dementia. This study explores patients’ symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on...

Canine-Assisted Therapy and Quality of Life in People With Alzheimer-Type Dementia: Pilot Study.

BackgroundWith the aim of improving the quality of life of people with Alzheimer’s disease, primarily as regards behavioral and psychological symptoms, we implemented canine-assisted therapy in a group of people with this disease.MethodsWe conducted a quasi-experimental study, with a simple pre-post case series design. Participants comprised 10 Alzheimer’s day care center users presenting severe or very severe cognitive decline. The measurement instrument employed was the Quality of Life in Late-Stage Dementia (QUALID) scale.ResultsBy the end of the therapy, 100% of participants showed an improvement in physical, behavioral, and psychological aspects. The total scores of the QUALID scale for the three different evaluation times (before the therapy and 6 and 12 months after starting) after the canine-assisted therapy intervention were smaller and less dispersed. The total score for the QUALID scale decreased significantly (p < 0.05) at 6 and 12 months after starting therapy. An analysis by item revealed that the scores of all of them fell during the course of the therapy.DiscussionOur study provides evidence of the significant benefits of canine-assisted therapy for quality of life in people with Alzheimer’s disease.

Quality of Life with Late-Stage Dementia: Exploring Opportunities to Intervene.

In late-stage dementia, families often prioritize quality of life (QoL) and comfort, yet little research examines factors impacting QoL. We sought to (1) describe temporal trends in QoL in late-stage dementia, and (2) explore associations between patient characteristics, care interventions, and QoL. Secondary analysis of data from the Goals of Care clinical trial. Twenty-two nursing homes (NHs) in North Carolina. Family decision makers for residents with late-stage dementia. Family-reported QoL at baseline and at 9 months using the Alzheimer's Disease-Related Quality of Life Instrument (ADRQL) with five subscales scored 0 to 100 (higher scores indicate better quality). Families reported demographics, primary goal of care, and described their perceptions of residents' QoL. Chart reviews provided data on hospital transfers, treatment plans, and hospice enrollment. We ran mixed effects models of hypothesized variables and change in ADRQL over time. The study sample was 241 dyads of residents with late-stage dementia and family decision makers. Family-reported ADRQL scores reflected moderately good QoL at baseline and at 9 months (69.1 vs 66.9; p = .106). Subscales for Awareness of Self (62.8; Global Deterioration Scale [GDS] = 5; 30.5; GDS = 7; p > .01) and Enjoyment of Activities (53.4; GDS = 5; 39.4; GDS = 7; p > .01) were lower in later stage disease. Qualitatively, family members associated better QoL for dementia with (1) activities, (2) opportunities to leave NH, (3) NH-structured activities, (4) attentiveness in NH, and (5) passive interaction. ADRQL at 9 months was associated with later dementia stage and referral to hospice (p < .01). Age (p = .004) and hospice enrollment were significantly associated with a larger decrease in ADRQL over 9 months (p = .019). A primary goal of comfort was associated with a larger increase in ADRQL (p = .022). Families judge QoL to be moderately good in late-stage dementia. They perceive activities, opportunities to leave the NH, and quality of interpersonal care as ways to improve dementia-specific QoL.

Trajectories of quality of life and their association with anxiety in people with dementia in nursing homes: A 12-month follow-up study.

ObjectivesThis study aimed to identify possible groups of people with dementia (PWD) in nursing homes with different trajectories of proxy-rated quality of life (QoL), and to explore how anxiety (along with other characteristics) was associated with these trajectories of QoL of PWD in nursing homes at a 12-month follow-up.MethodsWe included 298 PWD aged 65 years and older from 17 Norwegian nursing homes. The Norwegian version of the Rating Anxiety in Dementia scale (RAID-N) was used to assess anxiety, defined as RAID-N score ≥12; proxy-rated QoL was assessed by Quality of Life in Late-Stage Dementia (QUALID). The assessments were made at baseline and after a mean follow-up period of 350 days (SD 12.3). A growth mixture model identified two distinct trajectories of QUALID scores. Association between the QUALID score trajectories and demographic and clinical characteristics were analyzed with logistic regression models.ResultsTrajectory group 1 (206 participants) had a lower proportion of participants with anxiety, and a more stable and better QoL, compared to trajectory group 2 (92 participants) at a 12-month follow-up. In a multivariate logistic regression analysis, more severe impairment in activities of daily living, along with presence of anxiety, depression, agitation, and use of antipsychotics at baseline, were associated with belonging to the trajectory group with proxy-rated poor QoL.SignificancesThis study reveals that anxiety is associated with proxy-rated poor QoL of PWD at a 12-month follow-up. Efforts should be made to identify anxiety among nursing home residents with dementia to initiate treatment.

Reliability and Validity Testing of the Quality of Life in Late-Stage Dementia Scale

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.

Measuring quality of life of cognitively impaired elderly inpatients in palliative care: psychometric properties of the QUALID and CILQ scales

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.

The Reliability and Validity of the Norwegian Version of the Quality of Life in Late-Stage Dementia Scale

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.

Variables associated with change in quality of life among persons with dementia in nursing homes: a 10 months follow-up study.

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.

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

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.

Principal Component Analysis of the Norwegian Version of the Quality of Life in Late-Stage Dementia Scale

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.

Responsiveness of the QUALID to Improved Neuropsychiatric Symptoms in Patients with Alzheimer's Disease.

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.

The Effect of Person-Centred Dementia Care to Prevent Agitation and Other Neuropsychiatric Symptoms and Enhance Quality of Life in Nursing Home Patients: A 10-Month Randomized Controlled Trial

Aims: We examined whether Dementia Care Mapping (DCM) or the VIPS practice model (VPM) is more effective than education of the nursing home staff about dementia (control group) in reducing agitation and other neuropsychiatric symptoms as well as in enhancing the quality of life among nursing home patients. Methods: A 10-month three-armed cluster-randomized controlled trial compared DCM and VPM with control. Of 624 nursing home patients with dementia, 446 completed follow-up assessments. The primary outcome was the change on the Brief Agitation Rating Scale (BARS). Secondary outcomes were changes on the 10-item version of the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Cornell Scale for Depression in Dementia (CSDD) and the Quality of Life in Late-Stage Dementia (QUALID) scale. Results: Changes in the BARS score did not differ significantly between the DCM and the control group or between the VPM and the control group after 10 months. Positive differences were found for changes in the secondary outcomes: the NPI-Q sum score as well as the subscales NPI-Q agitation and NPI-Q psychosis were in favour of both interventions versus control, the QUALID score was in favour of DCM versus control and the CSDD score was in favour of VPM versus control. Conclusions: This study failed to find a significant effect of both interventions on the primary outcome. Positive effects on the secondary outcomes indicate that the methods merit further investigation.

Measuring Quality of Life in Intellectually Disabled Persons with Dementia with the Italian Version of the Quality of Life in Late-Stage Dementia (QUALID) Scale

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.