Alzheimer's Disease Related Quality Of Life Research Articles

Impact of plate shape on the conservation of food praxis in institutionalised elderly adults with severe Alzheimer's disease or mixed dementia: Praxalim an observational before-after non-randomized study.

To investigate whether the shape of the food plate could affect the conservation of praxis in institutionalised elderly adults with severe Alzheimer's disease or mixed dementia. We conducted a monocentric, prospective, observational, before-after case-only study in 32 patients with a loss of the ability to self-feed. The primary objective was to assess the change of food praxis using the Blandford scale at 3 weeks after changing the food plate. Secondary variables included the impact of the change of diet on the food praxis at 6 weeks, the patient's autonomy in the food intake evaluated by Tully's Eating Behaviour Scale (EBS), and the enjoyment of eating assessed by Part D of the Alzheimer's Disease-Related Quality of Life (ADRQL) scale at 3 and 6 weeks. Results: At 3 weeks after changing the food plate we observed a significant decrease in the number of aversive feeding behaviours (Δ=-0.90 ± 2.23; p=0.03) and an improved autonomy in self-feeding (Δ=1.88 ± 3.36.23; p=0.001). There was also an increase in the enjoyment of eating at 3 weeks (Δ=4.07 ± 13.02), but it was not statistically significant. These results were not consolidated at the 6 week timepoint. Conclusion: A simple change in the organisation of care during meals and the use of a familiar object can positively affect the recovery of the self-feeding autonomy of patients with severe dementia.

Validation of the Spanish Version of the ICECAP-O for Nursing Home Residents with Dementia.

BackgroundMeasurement of health-related quality of life (HRQoL) is important for a chronic disease, such as dementia, which impairs the quality of life of affected patients in addition to their length of life. This is important in the context of economic evaluations when interventions do not (only) affect HRQoL and these other factors also affect overall quality of life.ObjectiveTo validate the Spanish translation of the ICECAP-O’s capability to measure Health-related quality of life in elderly with dementia who live in nursing homes.MethodCross-sectional study. For 217 residents living in 8 Spanish nursing homes, questionnaires were completed by nursing professionals serving as proxy respondents. We analyzed the internal consistency and other psychometric properties. We investigated the convergent validity of the ICECAP-O with other HRQoL instruments, the EQ-5D extended with a cognitive dimension (EQ-5D+C), the Alzheimer’s Disease Related Quality of Life (ADRQL) measures, and the Barthel Index measure of activities of daily living (ADL).ResultsThe ICECAP-O presents satisfactory internal consistency (alpha 0.820). The factorial analysis indicated a structure of five principal dimensions that explain 66.57% of the total variance. Convergent validity between the ICECAP-O, EQ-5D+C, ADRQL, and Barthel Index scores was moderate to good (with correlations of 0.62, 0.61, and 0.68, respectively), but differed between dimensions of the instruments. Discriminant validity was confirmed by finding differences in ICECAP-O scores between subgroups based on ADL scores (0.70 low, 0.59 medium, and 0.39 high level care), dementia severity (0.72 mild, 0.63 medium, and 0.50 severe), and ages (0.59 below 75 years and 0.84 above 75 years).ConclusionsThis study presented the first use of a Spanish version of the ICECAP-O. The results indicate that the ICECAP-O appears to be a reliable Health-related quality of life measurement instrument showing good convergent and discriminant validity for people with dementia.

Quality of Life of Nursing Home Residents with Dementia: Validation of the German Version of the ICECAP-O

ObjectivesTo validate the ICECAP-O capability wellbeing measure’s German translation in older people with dementia living in a nursing home, and to investigate the influence of proxy characteristics on responses.MethodCross-sectional study. For 95 residents living in a German nursing home, questionnaires were completed by nursing professionals serving as proxy respondents. We investigated the convergent validity of the ICECAP-O with other Quality of Life (Qol) measures, the EQ-5D extended with a cognitive dimension (EQ-5D+C), the Alzheimer’s Disease Related Quality of Life (ADRQL) measures, and the Barthel-index measure of Activities of Daily Living (ADL). Discriminant validity was investigated using bivariate and multivariate stepwise regression analysis, comparing ICECAP-O scores between subgroups varying in dementia severity, care dependency, ADL status and demographic characteristics.ResultsConvergent validity between the ICECAP-O, EQ-5D+C, ADRQL and Barthel-Index scores was moderate to good (with correlations of 0.72, 0.69 and 0.53 respectively), but differed considerably between dimensions of the instruments. Discriminant validity was confirmed by finding differences in ICECAP-O scores between subgroups based on ADL scores (0.58 below 65 points on the Barthel-index and 0.80 above 65 points) and other characteristics. The ICECAP-O scores based on available tariffs were related to proxy characteristics gender (0.52 males versus 0.65 females) and work experience (0.61 below 2 years of experience versus 0.68 above 2 years).DiscussionThe results of this study suggest that the ICECAP-O is a promising generic measure for general Qol and capability of people with dementia living in a nursing home. Validity tests generally yielded favorable results. Work experience and gender appeared to influence proxy response, which raises questions regarding appropriate proxies, especially since the ICECAP-O may be completed by proxies relatively often. Further research is necessary to validate the German version of the ICECAP-O, with specific attention to proxy completion for people with dementia.

How to measure quality of life in shared-housing arrangements? A comparison of dementia-specific instruments

The appropriateness of existing quality of life (QoL) instruments in small-scale, homelike care facilities for people with dementia is as yet unknown. This study evaluated the psychometric properties of three QoL instruments in German shared-housing arrangements (SHA). A cross-sectional study was conducted in 36 SHA in Berlin to evaluate the acceptability, internal consistency, and validity (construct, convergent, and discriminant) of three QoL instruments: Alzheimer's Disease Related Quality of Life (ADRQL), Quality of Life-Alzheimer's Diseases (QoL-AD), and measuring QUAlity of LIfe in DEMentia (QUALIDEM). A total of 104 residents (mean age 79.0 years, 73 % female) were included. All instruments showed good acceptability, with QUALIDEM the best. Adequate levels of internal consistency for the ADRQL and QoL-AD and most of the QUALIDEM domains were found. Validity of all the instruments measuring QoL was confirmed. Study findings suggest that QUALIDEM is the preferred instrument to evaluate QoL of residents in SHA, especially due to the high acceptability. Further research is needed to develop and improve these existing measurements.

Dementia-Specific Quality of Life Instruments and Their Appropriateness in Shared-Housing Arrangements—A Literature Study

Shared-housing arrangements (SHA) in Germany are a specific type of housing arrangement that belongs to the global concept of small-scale living arrangements. This caring approach comprises characteristics of both home and institutional care for persons with dementia. To evaluate the impact of SHA on the quality of life (QoL) of residents, an appropriate setting- and dementia-specific QoL instrument is needed. This article aims to identify QoL instruments that relate to the core domains of SHA. After a comprehensive literature review, existing dementia-specific QoL instruments were evaluated to determine whether any have been specifically designed for or applied in SHA. Additionally, each domain of the instruments was matched with the core domains of SHA. None of the existing instruments was identified as having been developed for SHA. Matching of the instrument domains with the SHA core domains leads to the conclusion that Quality of Life-Alzheimer's Disease, Dementia Quality of Life, Alzheimer Disease-Related Quality of Life, and QUALIDEM are adequate instruments for measuring the dementia-specific QoL of persons living in SHA. For the first time, a basis has been created for valid QoL evaluations of residents with dementia living in SHA. The 4 identified instruments are considered applicable in SHA. Conducting a performance test and evaluating further attributes according to the Scientific Advisory Committee of the Medical Outcomes Trust (e.g., reliability and validity) will further elucidation of the appropriateness of the instruments for SHA.

Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures

To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development. Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD' QOL. Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression. Correlates of QOL in community-residing PWD depend on who rates the PWD's QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

Quality of life in nursing home residents with advanced dementia.

To examine quality of life (QOL) in nursing home (NH) residents with advanced dementia and identify correlates of QOL near the end of life. Cross-sectional data derived from NH records, interviews with residents' surrogate decision-makers, QOL ratings by NH caregivers, and assessment of residents' cognitive function. Three NHs in Maryland. A cohort of NH residents with dementia (n=119) who were receiving hospice or palliative care or met hospice criteria for dementia and their surrogates. QOL based on the proxy-rated Alzheimer' Disease-Related Quality of Life (ADRQL) scale administered to NH staff and validated against a single-item surrogate-rated measure of QOL, the Severe Impairment Rating Scale, to measure cognitive function and dichotomous indicators of neuropsychiatric symptoms (behavior problems, mood disorders, psychosis, delusions). Total ADRQL scores, ranging from 12.4 to 95.1 out of 100, were normally distributed and positively correlated (P<.001) with surrogate-rated QOL. Multiple regression analysis of ADRQL scores showed that residents with higher cognitive function (P<.001, 95% confidence interval (CI)=0.97-1.65) and those receiving pain medication (P=.006, 95% CI=3.30-19.59) had higher QOL, whereas residents with behavior problems (P=.01, 95% CI=-11.60 to -1.30) had lower QOL. The ADRQL is a valid indicator of QOL in NH residents with advanced dementia. QOL in this population may be improved near the end of life using appropriate assessment and treatment of pain and effective management of behavior problems.

The physical environment influences neuropsychiatric symptoms and other outcomes in assisted living residents

Although the number of elderly residents living in assisted living (AL) facilities is rising, few studies have examined the AL physical environment and its impact on resident well-being. We sought to quantify the relationship of AL physical environment with resident outcomes including neuropsychiatric symptoms (NPS), quality of life (QOL), and fall risk, and to compare the effects for demented and non-demented residents. Prospective cohort study of a stratified random sample of 326 AL residents living in 21 AL facilities. Measures included the Therapeutic Environmental Screening Scale for Nursing Homes and Residential Care (TESS-NH/RC) to rate facilities and in-person assessment of residents for diagnosis (and assessment of treatment) of dementia, ratings on standardized clinical, cognitive, and QOL measures. Regression models compared environmental measures with outcomes. TESS-NH/RC is modified into a scale for rating the AL physical environment AL-EQS. The AL Environmental Quality Score (AL-EQS) was strongly negatively associated with Neuropsychiatric Inventory (NPI) total score (p < 0.001), positively associated with Alzheimer Disease Related Quality of Life (ADRQL) score (p = 0.010), and negatively correlated with fall risk (p = 0.042). Factor analysis revealed an excellent two-factor solution, Dignity and Sensory. Both were strongly associated with NPI and associated with ADRQL. The physical environment of AL facilities likely affects NPS and QOL in AL residents, and the effect may be stronger for residents without dementia than for residents with dementia. Environmental manipulations that increase resident privacy, as well as implementing call buttons and telephones, may improve resident well-being.

Impact of Place of Residence on Relationship Between Quality of Life and Cognitive Decline in Dementia

The aim of this descriptive study was to estimate and compare the association between cognitive decline and quality of life (QOL) for 2 groups of dementia patients differing by place of residence: home or institution. Each subject was placed within a specific subgroup according to their Mini-Mental State Examination (MMSE) score and was evaluated by a QOL proxy-assessment [Alzheimer Disease Related Quality of Life (ADRQL)] and a dependency assessment (Katz Activities of Daily Living classification). For the "at home" and "institution" groups, global and subscale ADRQL scores showed significant differences between the 5 MMSE subgroups. Place of residence and MMSE subgroups significantly affected global and subscale ADRQL scores. The MMSE 4 to 8, 9 to 13, and 14 to 18 subgroups had ADRQL global scores significantly better in the institution group than the at home group. In contrast, the MMSE 19 to 23 and 0 to 3 subgroups had similar ADRQL global scores in both places of residence. In conclusion, there is no direct relationship between cognitive decline and QOL, and QOL does not seem to be better at home compared with the institution.

A pilot study on the effects of music therapy on frontotemporal dementia – developing a research protocol1

Some forms of dementia particularly affect the frontal parts of the brain which, in some cases, causes the onset of severe behavioural and psychological symptoms. No specific treatment for the primary diseases that cause these frontotemporal dementia conditions has yet been developed, and pharmacological treatment of the psychiatric symptoms is difficult, requiring specialist proficiency in the field. As there is not yet sufficient research that examines the effects of non-pharmacologic treatment with this group, there is a need to develop valid and reliable research protocols. Music therapy was investigated as an example of a non-pharmacologic treatment procedure. A pilot study was carried out with the focus to develop a research protocol for a future larger population study. In two case studies a combination of data collection methods were examined with the overall goal to document changes in intersubjectivity. In this pilot study there was a specific interest in selecting a relevant and manageable dementia specific instrument for measuring quality of life and relating it with other instruments. The following three instruments were tested: the Alzheimer's Disease-Related Quality of Life (ADRQL), the Cohen–Mansfield Agitation Inventory (CMAI), and the Neuro-psychiatric Inventory (NPI), and were related to case descriptions and video analyses. Recommendations for a mixed method research protocol focused on measuring the effect of music therapy with persons with frontotemporal dementia are presented.

Evaluation of the Validity and Reliability of the Alzheimer Disease-related Quality of Life Assessment Instrument

The Alzheimer Disease-related Quality of Life (ADRQL) instrument was developed to assess health-related quality of life in people with AD using assessments from family caregivers or professional staff. Validity and reliability of the ADRQL in its original form and a revised version are assessed in a sample consisting of persons in 3 residential settings (community, assisted living, nursing home). The ADRQL exhibits good item-internal consistency (67.5% of items met 0.40 standard); high correlation of items to hypothesized scales (85% of items met criteria for 4 of 5 subscales and the overall instrument); a good range of scores (21.6 to 100 for total sample revised instrument); very low missing data; and internal-consistency reliability coefficients exceeding the minimum reliability standard for group comparisons (0.86 for total scores; range of 0.56 to 0.83 for subscales). In a community sample, the ADRQL discriminates between groups and is responsive over time in hypothesized directions. Characteristics of caregiver raters (community sample) including demographics and self-rated health were largely unrelated to scores. The results support the use of the ADRQL to evaluate health-related quality of life in persons with AD across various care settings and various stages of the disease. Modest correlations with cognitive and functional disability levels suggest that the ADRQL provides insight into other important dimensions of life experience in persons with dementia. The revised version has improved measurement properties and is recommended for use over the original.

A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility.

Dementia is a major public health problem. Increased attention is being paid to the quality of life (QOL) of people with this chronic disease. There have been no longitudinal studies of QOL change in dementia. Longitudinal study of a cohort of 47 persons with dementia residing in a long-term care facility. The QOL of participants was assessed at baseline using the Alzheimer's Disease Related Quality of Life (ADRQL) scale. At this time participants were also assessed on a series of other clinical measures. QOL was reassessed on the ADRQL scores two years later. There was small but significant mean decline in ADRQL over the two-year study interval. However, for 49% of participants, ADRQL scores did not change or improved. Small but significant declines occurred in all ADRQL domains, with the exception of 'feelings and mood'. Of the baseline variables assessed, only a lower baseline ADRQL score was associated with greater decline in ADRQL score at follow-up. There was no association between sociodemographic variables, baseline ratings of dementia severity (MMSE), ADL impairment, behavioral impairment, and depression, or MMSE change during follow-up and ADRQL decline. Among long-term care residents with dementia there is a small decline in QOL ratings over two years. However, for nearly half, QOL ratings stay the same or improve. The ADRQL is a sensitive measure of change in QOL and is appropriate for use as an outcome measure in intervention studies. The predictors of QOL change are complex and require further study.