Dementia-specific Quality Of Life Research Articles

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

THE ASSOCIATION OF COVID-19 OUTBREAKS AND OTHER FACTORS WITH NURSING HOME RESIDENTS’ QUALITY OF LIFE

Abstract Nursing home (NH) residents’ Quality of life (QoL) is an important goal of care. However, it is understudied, particularly during the COVID-19 pandemic. Our objective was to examine whether COVID-19 outbreaks, care aide emotional exhaustion, and lack of resident access to geriatric professionals were associated with NH residents’ QoL. In this cross-sectional study (Jul-Dec 2021), we purposefully selected 9 NHs in Alberta, Canada based on their COVID-19 exposure (no or minor/short outbreaks vs repeated or extensive outbreaks). Using a validated questionnaire (DEMQOL-CH), we assessed dementia-specific QoL of 689 residents from 18 care units through video-based interviews with care aides. Independent variables included COVID-19 outbreak in the NH in the last 2 weeks (health authority records), proportion of care aides on a care unit with high emotional exhaustion scores (9-item short form Maslach Burnout Inventory), and resident access to geriatric professionals (validated facility survey). We ran mixed-effects regression models, adjusted for facility and care unit characteristics (validated facility and care unit surveys), and resident covariates (Resident Assessment Instrument – Minimum Data Set 2.0). COVID-19 outbreaks within two weeks of the data collection (β=0.189, 95% confidence interval [CI]: 0.058;0.320), higher proportions of emotionally exhausted care aides on a care unit (β=0.681, 95%CI: 0.246;1.115) and lack of access to geriatric professionals (β=0.216, 95%CI: 0.003;0.428) were significantly associated with poorer resident QoL. Policies aimed at reducing infection outbreaks, better supporting care staff, and increasing access to geriatric specialists, may help to mitigate negative effects of COVID-19 NH residents’ QoL.

Determinants of quality of life among people with dementia: evidence from a South Asian population

BackgroundDementia has become a public health priority along with population aging worldwide. Owing to its chronic progressive nature in the absence of a cure, maintaining the best possible quality of life (QOL) has become the desired outcome for people with dementia (PWD).AimThe current study aimed to determine the factors associated with ‘good QOL’ in people with dementia in the Sri Lankan setting.MethodsAn unmatched case–control study was conducted to identify the factors associated with ‘good QoL. Cases in the study included dementia patients having ‘good’ QOL, whereas controls were those having ‘poor’ or ‘average’ QOL. Both cases and controls were selected from the same patient base at a premier tertiary care state hospital in Colombo District, Sri Lanka. They were identified using the validated DEMQOL (Dementia Specific Quality of Life) tool, adhering to strict eligibility criteria. An interviewer-administered questionnaire was used to assess the associated factors. Bivariate analysis followed by logistic regression modelling determined the associated factors for ‘good QOL’ adjusted for confounders using odds ratio (OR) and 95% confidence interval (CI).ResultsThe study sample consisted of 64 cases and 208 controls. After adjusting for confounders, education up to GCE O/Level and above (OR = 4.02; 95% CI = 2.97, 12.0), ever employed (OR = 3.21; 95% CI = 1.59, 11.06), good social functioning (OR = 4.14; 95% CI = 3.39, 16.46), mild functional impairment (OR = 1.77; 95% CI = 1.13, 9.67), little or no caregiver burden (OR = 2.96; 95% CI = 1.86, 10.94), absence of apathy (OR = 2.22; 95% CI = 1.27, 12.48) and absence of irritability (OR = 2.17; 95% CI = 1.72, 10.34) were found to be significantly associated with ‘good QOL’. 60% of the variance of ‘good’ QOL among PWD was explained by the factors in the final model.Conclusions and recommendationsThe identified determinants of ‘good QOL’ clearly show how the QOL improvement interventions need to be planned. Accordingly, such programmes should be primarily focused on strategies to improve PWDs' ADL (Activities of Daily living), reduce and manage neuropsychiatric symptoms effectively and to promote activities enhancing social functioning, and plan programmes to address caregiver burden.

Cross-cultural adaptation and validation of a tool to assess dementia specific quality of life: Evidence from a South Asian population

The Sri Lanka Journal of Psychiatry (SLJP) is a peer-reviewed, open access journal published bi annually by the Sri Lanka College of Psychiatrists.The Journal publishes original papers, brief reports including case reports and commentaries relevant to psychiatry and allied sciences. The Sri Lanka Journal of Psychiatry is committed to maintaining and conforming to the editorial and ethical standards recommended by the International Committee of Medical Journal Editors.Cover“Perseverance”. These tenacious fishermen in Mannar continue their livelihood despite numerous difficulties. L. N. P. Samarasinghe, Acting Consultant Psychiatrist, Base Hospital Nikaweratiya, Sri Lanka.

How, Why and Where it Hurts—Breaking Down Pain Syndrome Among Nursing Home Patients With Dementia: A Cross-Sectional Analysis of the COSMOS Trial

BackgroundBetween 40%-60% of nursing home patients with dementia suffer from chronic and acute pain despite increasing their analgesic drug prescription. AimsDetermine the locations and intensity of pain and the association between quality of life (QoL) and four stratified pain–analgesic groups: (1) pain—analgesics treatment; (2) pain—no analgesics; (3) no pain—analgesics treatment; and (4) no pain—no analgesics. DesignMulticenter, multicomponent cluster randomized controlled Communication, Systematic assessment and treatment of pain, Medication review, Occupational therapy, and Safety - an effectiveness (COSMOS) trial. ParticipantsAt baseline, 723 nursing home patients were enrolled; 463 were completely evaluated for the presence of pain and included in the cross-sectional analyses. MethodsData were collected using the following tests: Cognitive function (Mini-Mental-State Evaluation [MMSE]); Quality of Life in Late stage of Dementia (QUALID); Dementia-Specific QoL (QUALIDEM); Mobilization–Observation–Behavior–Intensity–Dementia Pain Scale (MOBID-2); and number of analgesic drug prescriptions. Analysis of covariance (ANCOVA) was used to compare pain and QoL across pain–analgesics groups. ResultsThe majority of participants (78%) had moderate-to-severe dementia, were female (74%), and a mean age of 86.7 years. Almost 44% reported clinically significant pain, whereas 69% had ≥2 pain locations, especially in the musculoskeletal system. Some 33.5% of participants had pain receiving analgesics, 10% had pain with no analgesics, and 27% had no pain receiving analgesics. Patients evaluated with clinically significant pain intensity scores had lower QoL (<.001) compared with assessments relying on different pain locations. ConclusionUntreated musculoskeletal and multi-located pain is still common in nursing home patients with dementia. A significant share without pain receive analgesics. Proper pain assessment and regular re-assessment are prerequisites for the prescribing and deprescribing of analgesics. Pain intensity scores are more significantly connected to QoL. This must be stressed when evaluating pain and QoL.

Value of Personalized Dementia-Specific Quality of Life Scales: An Explorative Study in 3 European Countries.

Measuring Quality of Life (QOL) can be difficult due to its individual character. To explore the value of personalized QOL measurement for people with dementia, personalized versions of two dementia-specific QOL scales (Dementia quality of Life (DQoL) and Quaility of Life in Alzheimer's Disease (QoL-AD)) were constructed. This study investigated whether the personalized measures are more valid to detect variations in QOL than their standard versions for people with mild to moderate dementia, with sufficient internal consistency. Moreover, the relationship between the personalized QOL measures and severity of dementia was investigated. Finally, the study explored the differences between countries regarding the personalized overall QOL and differences in the importance of QOL domains. This explorative one-group design study used baseline data from the MEETINGDEM study into the implementation of the Meeting Centres Support Programme in Italy, Poland and the UK. The personalized versions of the DQoL and QoL-AD were reliable, but not more valid than their standard versions. No relationship between severity of dementia and personalized QOL was found. While no differences were found between countries for the overall QOL score, some QOL domains were valued differently: people with dementia from the UK rated self-esteem, mood, physical health, energy level and the ability to do chores around the house significantly less important than people from Italy and Poland. The personalized versions of the DQoL and QoL-AD may offer dementia care practice important insights into what domains contribute most to an individual's QOL.

Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers.

Background:Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health.Methods:There were 52 participants (26 YoD patient–caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life–short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer’s Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating).Results:Patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD (P = .001). Patient QoL self-reports for the WHOQOL-BREF (P < .01) and single-item QoL (P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure.Discussion:Patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.

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.

Psychometric properties and feasibility of use of dementia specific quality of life instruments for use in care settings: a systematic review.

Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings. Systematic review. Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review. Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use. Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.

PMH26 - The Effect of Alternative Therapy Interventions On The Quality of Life of Dementia Patients: Meta-Analyses

Since there is no cure for dementia, patients often seek complementary and alternative medicine (CAM) therapies to slow down disease progression. While the quality of life (QoL) is an important outcome dimension for dementia, the QoL outcomes of CAM for dementia have not been clear. This study aimed to determine the effect of CAM therapies for the dementia patients in terms of QoL outcomes by conducting systematic review and meta-analyses. A systematic review search in PubMed, CENTRAL, EMBASE, MEDLINE, NCSL, KISS, KMbase, NDSL, RISS and OASIS was performed by June 2017. Search keywords were the following: ‘dementia’, ‘alzheimer’, ‘cognitive impairment’, ‘Chinese’, ‘Korean’, ‘oriental’, ‘herbal’, ‘acupuncture’ and ‘quality of life’. Literature were selected separately by two independent researchers, and the quality of literatures was evaluated using RoB and RoBAN. All quantitative data were synthesized using the Comprehensive Meta-Analysis (CMA) software, version 3.0 For the systematic review, 29 articles (14 RCTs, 13 pre-post trials, and 2 cohort studies) with QoL measures were included. Dementia specific QoL instruments like GQOL-D (n=7) and QOL-AD (n=6) and general instruments of WHOQOL-BREF (n=4) and SF-36 (n=4) were generally reported. In meta-analyses, a combination of two acupuncture intervention researches (electro-acupuncture RCT and pre-post trial), it was found that acupuncture significantly increased standard mean difference (SMD) by 0.384 only at mental component of SF-36. Also various CAM interventions such as multiple training modalities, forest healing and creative story telling were significant in psychological (SMD 0.537, p=.007) and social relationships domain (SMD 0.519, p=.004) of WHOQOL-BREF. This study found that CAM interventions improved QoLs of dementia patients. Therefore, CAM therapies can be considered part of the clinical management of dementia and utilized to assist with pharmacological treatment. Furthermore, if the coverage of health insurance is extended to CAM treatment, the QoL of patients with dementia will be greatly improved.

Influence of an Equine-Assisted Activities Program on Dementia-Specific Quality of Life.

Institutional facilities face challenges providing experiences to residents with dementia that promote participation in meaningful activities. Guided by the Lived Environment Life Quality Model, this study investigated associations between 9 different activity situations-one an equine-assisted activities program (EAAP)-and positive, negative, and neutral behavioral indicators of quality of life (QoL) in 6 residents with dementia who expressed an interest in horses. Direct observational data were collected for 4 hours twice weekly over 8 weeks. Using χ2 tests, differences across activity situations were tested. More positive patterns of time use (conversation; χ2 = 44.3, P < .001) and emotional well-being (pleasure; χ2 = 21.8, P = .001) were found in EAAP compared to other activity situations. Further, EAAP was the only activity situation associated with all positive QoL indicators. These findings add to our understanding the importance of providing meaningful activities that promote use of abilities and provide environmental support, for enhancing QoL, especially for institutionalized people with dementia.

Item distribution, internal consistency and inter-rater reliability of the German version of the QUALIDEM for people with mild to severe and very severe dementia.

BackgroundThe QUALIDEM is a dementia-specific Quality of life (Qol) instrument that is recommended for longitudinal studies and advanced stages of dementia. Our study aimed to develop a user guide for the German version of the QUALIDEM and to determine the item distribution, internal consistency and inter-rater reliability (IRR) of the German QUALIDEM.MethodsA user guide was developed based on cognitive interviews with ten professional caregivers and a focus group with six professional caregivers. The item distribution, internal consistency and IRR were evaluated through a field test including n = 55 (mild to severe dementia) and n = 36 (very severe dementia) residents from nine nursing homes. Individuals with dementia were assessed four times by blinded proxy raters.ResultsA user guide with instructions for the application of the QUALIDEM and definitions and examples for each item was created. Based on the single-measure intra-class correlation coefficient (ICC for absolute agreement), we observed strong IRR for nearly all of the QUALIDEM subscales, with ICCs of at least 0.79. A lower ICC (ICC = 0.64) was only obtained for people with very severe dementia on the ‘negative affect’ subscale.ConclusionsThe IRR improved based on the application of the QUALIDEM user guide developed in this study. We demonstrated a sufficient IRR for all subscales of the German version of the QUALIDEM, with the exception of the ‘negative affect’ subscale in the subsample of people with very severe dementia. The item distribution and internal consistency results highlight the need to develop new informative items for some subscales.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0296-0) contains supplementary material, which is available to authorized users.

Dementia-specific quality of life instruments: a conceptual analysis.

Over the past 20 years, many researchers have worked in developing various methods for measuring quality of life (QoL) of people with dementia. The aim of this review is to develop the conceptual frameworks of the dementia-specific QoL instruments, to identify their evolution over time and to provide elements of reflection on the QoL concept in dementia and its evaluation. An electronic search was conducted on PsycINFO and MEDLINE databases, from January 1985 to June 2015 using a combination of key words that include QoL, dementia, and review. The analysis of the conceptual frameworks of the 18 selected dementia-specific QoL tools shows a great diversity in: (1) the QoL definitions (e.g. health-related QoL definitions, QoL definitions based on Lawton's work, or similar to this latter); (2) the theoretical QoL models (e.g. Lawton' work and modified Lawton, adaptation, personhood); (3) the domains and dimensions; (4) the way to construct the instrument (e.g. development based on literature, opinion of the experts), and (5) the items' formulation (e.g. use of criterion of intensity or frequency). There are different conceptual frameworks in the dementia-specific QoL measures with improvements over time (e.g. inclusion of interesting concepts such as adaptation, taking into account the views of patients themselves). Each of the conceptual parameters (definitions, models, domains, and dimensions) is discussed to identify the scales that are conceptually the strongest. Through their review, recommendations for future instrument refinement and development are discussed and a new QoL definition is proposed.

The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the dependence in AD in England 2 longitudinal study.

The relationship between conventional indicators of Alzheimer's disease (AD) progression and quality of life (QoL) outcomes is unclear. Dependence on others has been recommended as a unifying construct in defining AD severity. This study examined the relationship between indicators of disease severity (including dependence) and changes in QoL and utility over 18 months. A multi-centre, cohort study was conducted across 18 UK sites. One hundred and forty-five patients with possible/probable AD and their caregivers completed assessments of disease severity (Dependence Scale, Mini-mental state examination, Neuropsychiatric Inventory, Disability Assessment for Dementia), dementia-specific QoL (DEMQOL, DEMQOL-Proxy) and generic health-related utility (EQ-5D) at both time points. There was evidence of individual change in QoL over 18 months, with over 50% of patients reporting either maintenance or improvement of life quality. The EQ-5D proxy suggested a mean decline in QoL, whereas the DEMQOL-Proxy indicated overall improvement. In the subsample of people who self-reported QoL and utility, no mean change was evident. Changes in dependence did not explain changes on any QoL or utility outcome. There was a weak association between the EQ-5D proxy and changes in cognition, whereas changes on the DEMQOL-Proxy were partly explained by changes in behavioural disturbance. The natural progression of AD over 18 months does not lead to inevitable decline in QoL or utility. There are no clear or consistent direct relationships between changes in disease severity and QoL outcomes. The impact of increasing dependence and worsening disease severity is likely buffered by a combination of psychological, social and environmental factors.

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.

The Spanish version of the dementia quality of life questionnaire: A validation study

Background: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. Methods: Two forward translations, a reconciled version, and then a back translation were completed and subjected to expert review. A total of 112 patients with dementia, diagnosed according to DSM-IV criteria, from six centres providing care for persons with dementia in Spain participated in the study. The following patient-reported information was obtained by interview: demographics, subjective perception of health, depressive symptoms (Geriatric Depression Scale-15; GDS-15), functional ability (Barthel Index), and both generic (World Health Organization Quality of Life; WHOQOL-BREF) and dementia-specific quality of life (DQoL). Results: The Spanish version of the DQoL showed acceptable psychometric properties. Internal consistency (Cronbach's alpha) was acceptable for most of the DQoL scales. As expected, associations were found between DQoL scales and the WHOQOL-BREF psychological domain and the GDS-15, indicating good validity. Neither functional status nor severity of dementia was associated with QoL; but depressive symptoms and self-reported feeling ill had a negative association on QoL. Conclusions: The results showed that the Spanish version of the DQoL has comparable psychometric properties to the US version. The DQoL appears to be a reliable and valid instrument intended to be administered to patients with mild/moderate dementia who are living at home.

Quality of life in dementia patients in Athens, Greece: predictive factors and the role of caregiver-related factors

Quality of life (QOL) is increasingly recognized as the main target of currently available dementia care. Its assessment has grown exponentially in the dementia field, but few studies have examined predictive factors for QOL taking caregiver variables into account. We examined patient and caregiver factors related to the QOL of dementia patients. The study design was cross-sectional. 161 couples of community residing dementia patients and their primary caregivers were interviewed. QOL was measured by the ADRQL, a proxy-rated, dementia-specific QOL instrument. Demographic factors were collected and clinical characteristics assessed using validated scales. In univariate analyses several patient and caregiver characteristics appeared associated with patient QOL. In multivariate analyses, independent predictors of worse patient QOL were behavioral and depressive symptoms of dementia patients, dependency in basic activities of daily living, poorer cognitive function, use of antipsychotic medication, caregiver burden, and caregiver not being an adult child. The adjusted R2 of the final, seven-factor model was 0.598. QOL for a person with dementia is a complex issue that is associated with several patient and caregiver factors. Efforts to improve patients' QOL should be addressed for both patients and caregivers. The measurement of QOL should be included, when possible, as a standard measurement tool, in everyday dementia clinical practice.

The concept of quality of life in dementia in the different stages of the disease

In order to conceptually define quality of life (QOL) in dementia, the literature on QOL in the elderly population, in chronic disease and in dementia was studied. Dementia is a progressive, age-related, chronic condition and to avoid omissions within the dementia-specific concept of QOL, a broad orientation was the preferred approach in this literature study. Adaptation is a major outcome in studies investigating interventions aimed at improving QOL in chronic conditions, but to date, it has not been used in the definition of QOL. It is argued that adaptation is an important indication of QOL in people with chronic diseases and therefore also in dementia. Some crucial issues in assessing dementia-related QOL that are relevant to clarify the continuing debate on whether QOL, particularly in dementia, can be measured at all, are discussed. Then the following conceptual definition is offered: dementia-specific QOL is the multidimensional evaluation of the person-environment system of the individual, in terms of adaptation to the perceived consequences of the dementia.

Comparison of Dementia-Specific Quality of Life Measures in Adult Day Centers

ABSTRACT This study evaluated five dementia-specific quality of life (DQOL) measures including client interviews, staff proxies, and observations with 54 clients in three adult day centers. Also, the relationship of cognitive and functional status to each of the DQOL measures was assessed. Client interviews correlated well with each other, but not with other measures. Staff proxies were strongly correlated with each other and moderately correlated with the observational measure. On average, clients rated their DQOL higher than staff. Analyses suggest that functional impairment is associated with poorer DQOL as indicated by staff and observer measures. Possible explanations and implications are explored.

Quality of life in dementia patients in long-term care.

To evaluate variables associated with quality of life (QOL) in dementia residents in a long-term care facility using a recently standardized and validated dementia-specific QOL scale (ADRQL). A cross-sectional, case-control design was employed using validated scales to assess dementia-related symptomatology. Thirty-two facility staff members were interviewed to assess the QOL of 120 patients meeting DSM-IV for dementia criteria residing in long-term care. ADRQL scores were higher in assisted living residents than in skilled nursing facility residents. In univariate analyses, worse orientation, greater physical dependency, depression, and treatment with anxiolytics were associated with lower ADRQL scores. In multivariate analyses, lower scores were associated with worse orientation, greater physical dependency, depression, and anxiolytic treatment. Residents exhibited better QOL than expected. Future longitudinal studies should address if reorientation, activity therapy, treatment of depression, and avoidance of benzodiazepines might improve QOL in this population. Interventions that might improve orientation and physical abilities, such as cholinomimetic therapies, psychosocial interventions, or behavioral strategies, should also be studied in future research on QOL.