Cost-effectiveness of the FindMyApps eHealth intervention vs. digital care as usual: results from a randomised controlled trial.

OBJECTIVES: Despite growing interest, the cost-effectiveness of eHealth interventions for supporting quality of life of people with dementia and their caregivers remains unclear. This study evaluated the cost-effectiveness of the FindMyApps intervention, compared to digital care-as-usual. FindMyApps aims to help people with dementia and their caregivers find and learn to use tablet apps that may support social participation and self-management of people with dementia and sense of competence of caregivers. METHOD: A randomised controlled trial (Netherlands Trial Register NL8157) was conducted, including people with mild cognitive impairment (MCI) or mild dementia and their informal caregivers (FindMyApps n = 76, digital care-as-usual n = 74). Outcomes for people with MCI/dementia were Quality-Adjusted Life-Years (QALYs), calculated from EQ-5D-5L data and the Dutch tariff for utility scores, social participation (Maastricht Social Participation Profile) and quality of life (Adult Social Care Outcomes Toolkit), and for caregivers, QALYs and sense of competence (Short Sense of Competence Questionnaire). Societal costs were calculated using data collected with the RUD-lite instrument and the Dutch costing guideline. Multiple imputation was employed to fill in missing cost and effect data. Bootstrapped multilevel models were used to estimate incremental total societal costs and incremental effects between groups which were then used to calculate Incremental Cost-Effectiveness Ratios (ICERs). Cost-effectiveness acceptability curves were estimated. RESULTS: In the FindMyApps group, caregiver SSCQ scores were significantly higher compared to care-as-usual, n = 150, mean difference = 0.75, 95% CI [0.14, 1.38]. Other outcomes did not significantly differ between groups. Total societal costs for people with dementia were not significantly different, n = 150, mean difference = €-774, 95%CI [-2.643, .,079]. Total societal costs for caregivers were significantly lower in the FindMyApps group compared to care-as-usual, n = 150, mean difference = € -392, 95% CI [-1.254, -26], largely due to lower supportive care costs, mean difference = €-252, 95% CI [-1.009, 42]. For all outcomes, the probability that FindMyApps was cost-effective at a willingness-to-pay threshold of €0 per point of improvement was 0.72 for people with dementia and 0.93 for caregivers. CONCLUSION: FindMyApps is a cost-effective intervention for supporting caregivers' sense of competence. Further implementation of FindMyApps is warranted.

The effects of psychosocial interventions using generic photos on social interaction, mood and quality of life of persons with dementia: a systematic review.

BACKGROUND: Although family photos are often used in the psychosocial care for people with dementia, little is known about the use and effectiveness of generic photos. This systematic literature review explored psychosocial interventions using generic photos for people with dementia, and the effects they have on their social interaction and/or mood and/or quality of life. In addition, it was investigated whether these interventions made use of technology in its implementation. METHODS: A systematic search on the following databases was performed: PubMed, Embase, APA PsychInfo, Cinahl, Web of Science, Scopus and Cochrane Central. Inclusion and exclusion criteria were based on the PICO model (Population, Intervention, Comparison, Outcome), and quality assessment was undertaken using the Weight of Evidence Framework. Narrative synthesis was undertaken to summarize study characteristics- settings and designs, type of psychosocial interventions identified, type of photos and technology used, outcome measures, and results. RESULTS: A total of 2,035 results were found, however after title, abstract and full-text screening, a total of 8 studies were included. The most common psychosocial intervention using generic photos was found to be reminiscence therapy, followed by art-viewing activities. In studies that used technology, it was reported that viewing digitalized photos were either similar or better to conventional printed photos. Despite photos being generic, it was found that generic photos could still hold personal significance to the person with dementia. Some positive and significant effects were found for the outcomes social interaction, mood and quality of life, though no study evaluated all three outcomes. Two studies were rated as having high overall quality, 4 were rated as fair, and 2 studies had a low quality assessment rating. CONCLUSION: Studies found using generic photos were limited, showing varying outcomes and methodological quality. Firm conclusions on the effectiveness of interventions using generic photos are not possible. However, the use of generic photos in psychosocial interventions is a promising area for future research. Researchers should consider studies with better methodological quality and larger samples; and qualitative studies where the intention is to get better insight into successful implementation and impact mechanisms of such psychosocial interventions. TRIAL REGISTRATION: n/a.

Validity and reliability of the Danish version of QUALIDEM.

INTRODUCTION: QUALIDEM is a dementia-specific QoL instrument that allows a proxy-based Quality of Life rating in all stages of dementia. It was originally developed in The Netherlands and has later been translated into English and German. This study endeavoured to translate, cross-culturally adapt and test important psychometric properties of a Danish version in a cross-sectional validation study with a nested test-retest design. METHOD: All items underwent forward and backward translation by bilingual academics. Persons with dementia were recruited from 28 healthcare units in a Danish municipality. The severity of dementia was determined using a pragmatic approach allowing the site team to trichotomise the disease (mild, moderate-severe and very severe) before scoring the QUALIDEM. Psychometric properties for QUALIDEM were determined for item characteristics, construct validity, internal consistency, test-retest reliability, measurement error and floor and ceiling effects. The study was approved by The Danish Data Protection Agency. RESULTS: A total of 169 persons with dementia, aged 51-103, were included. The construct validity testing showed that the overall proportion of correctly hypothesised correlations was 83%. Testing for internal consistency, Cronbach's α ranged from 0.65 to 0.85 in mild-severe dementia with three out of nine subscales having values below 0.7. For very severe dementia, Cronbach's α ranged from 0.44 to 0.81, with three out of six subscales having insufficient values. For test-retest reliability, the intra-class correlation coefficients ranged from 0.56 to 0.86. The 'scale width' method revealed a marked ceiling effect in all subscales ranging from 30.6% to 87.7%. DISCUSSION: The QUALIDEM was successfully translated and cross-culturally adapted into Danish. Most subscales show acceptable internal consistency and test-retest reliability. However, a substantial measurement error and ceiling effect was present in most subscales. CONCLUSION: With few exceptions, the subscales of the Danish version of QUALIDEM have acceptable validity and reliability. Future research should address the limitations of the ceiling effects.

Known in the nursing home: development and evaluation of a digital person-centered artistic photo-activity intervention to promote social interaction between residents with dementia, and their formal and informal carers.

BACKGROUND: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. METHODS: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo-Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. DISCUSSION: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. TRIAL REGISTRATION: Netherlands Trial Register: NL9219 ; registered (21 January 2021); NTR (trialregister.nl).

Evaluation of FindMyApps: protocol for a randomized controlled trial of the effectiveness and cost-effectiveness of a tablet-based intervention to improve self-management and social participation of community-dwelling people with mild dementia, compared to usual tablet use.

BACKGROUND: For the rising number of people living with dementia, cost-effective community-based interventions to support psychosocial care are needed. The FindMyApps intervention has been developed with and for people with dementia and their caregivers, to help them use tablets to facilitate self-management and engagement in meaningful social activities. A feasibility study and exploratory pilot trial evaluating FindMyApps have been carried out. This definitive trial further evaluates the effectiveness of the intervention and, for the first time, the cost-effectiveness. METHODS: A randomized controlled non-blinded single-center two-arm superiority trial will be conducted. Community-dwelling people with Mild Cognitive Impairment (MCI), or dementia with a Mini Mental-State Examination (MMSE) of > 17 and < 26, or Global Deterioration Scale 3 or 4, with an informal caregiver and access to a wireless internet connection will be included. In total, 150 patient-caregiver dyads will be randomly allocated to receive either usual care (control arm - tablet computer; n = 75 dyads) or usual care and the FindMyApps intervention (experimental arm - tablet computer and FindMyApps; n = 75 dyads). The primary outcomes are: for people with dementia, self-management and social participation; for caregivers, sense of competence. In addition to a main effect analysis, a cost-effectiveness analysis will be performed. In line with MRC guidance for evaluation of complex interventions a process evaluation will also be undertaken. DISCUSSION: Results of the trial are expected to be available in 2023 and will be submitted for publication in international peer-reviewed scientific journals, in addition to conference presentations and reporting via the EU Marie Sklodowska-Curie DISTINCT ITN network. By providing evidence for or against the effectiveness and cost-effectiveness of the FindMyApps intervention, the results of the trial will influence national implementation of FindMyApps. We hope that the results of the trial will further stimulate research and development at the intersection of technology and psycho-social care in dementia. We hope to further demonstrate that the randomized controlled trial is a valuable and feasible means of evaluating new digital technologies, to stimulate further high-quality research in this growing field. TRIAL REGISTRATION NUMBER: Netherlands Trial Register: NL8157 ; registered 15th November 2019.

Structural validity and internal consistency of the Qualidem in people with severe dementia.

BACKGROUND: Since its development, the Qualidem has had items that were considered unsuited for people with very severe dementia. This study attempted to investigate the applicability of all Qualidem items in people with all stages of dementia severity. METHODS: Four data sets that contained Qualidem observations on people with dementia were combined. Dementia severity was categorized based on the Global Deterioration Scale (GDS), with a dichotomization of very severe dementia (GDS 7) and others (GDS 1-6). Unidimensional latent-trait models (Mokken scaling) were estimated to fit the Qualidem responses in the overall sample and the dichotomized groups. Scalability was assessed using coefficients of homogeneity (Loevinger's H), while reliability was assessed with Cronbach's α and ρ. RESULTS: Combining the four databases resulted in 4,354 Qualidem measurements. The scalability of all scales was considered acceptable in the overall sample, as well is in the subgroups (all H > 0.3). Additionally, the reliability was good-excellent in the scales: "positive affect," "positive self-image," "care relationship," and "negative affect." Reliability was questionable-acceptable for "feeling at home," "social relations," "social isolation," and "restless tense behavior." Reliability was poor for "having something to do." CONCLUSIONS: Statistical considerations allow using all Qualidem items in all dementia stages. Future research should determine balance of statistical- versus conceptual-based reasoning in this academic debate.

FindMyApps compared with usual tablet use to promote social health of community-dwelling people with mild dementia and their informal caregivers: a randomised controlled trial.

Background: FindMyApps is a tablet-based eHealth intervention designed to help people learn to use a tablet and find easy-to-use apps. This study evaluated the effectiveness of FindMyApps for supporting social health of people living with dementia, and sense of competence of their informal caregivers. Methods: A single-centre, two-arm, non-blinded randomised controlled trial was conducted (Netherlands Trial Register NL8157). From 1st January 2020 to 31st July 2022, community-dwelling people in the Netherlands with a pre-established diagnosis of mild cognitive impairment (MCI) or dementia (Brief Cognitive Rating Scale 17-32), an informal caregiver and internet connection were allocated by block randomisation to receive FindMyApps or digital care-as-usual. Primary outcomes (measured at baseline and after three months) for people with dementia/MCI were self-management (Adult Social Care Outcomes Toolkit total score) and social participation (Maastricht Social Participation Profile frequency and diversity scores), and for caregivers, sense of competence (Short Sense of Competence Questionnaire total score). Between-group differences were tested by MANCOVA or ANCOVA (alpha = 0.05). Findings: 150 dyads were randomised (FindMyApps n = 76, care-as-usual n = 74). Follow-up data were available for 128 dyads (FindMyApps n = 64, care-as-usual n = 64), who were included in the analysis in the trial arm to which they were assigned. No harms of the intervention were identified. There were no statistically significant differences in outcomes for people with dementia/MCI at group level. Diagnosis and experiencing apathy appeared to be relevant effect modifiers of secondary outcomes (neuropsychiatric symptoms, positive affect, sense of belonging, and pleasurable activities). Caregivers who received FindMyApps had higher sense of competence at three months (F [1,123] = 7.01, p = 0.0092, η2 = 0.054). Interpretation: Overall we found no evidence that the FindMyApps intervention better supported social participation or self-management of people with MCI/dementia than digital care-as-usual. FindMyApps does seem to better support informal caregivers' sense of competence. For people with a diagnosis of mild dementia and older people, better tailored interventions, implementation and outcome measures may be needed. Funding: Marie Sklodowska Curie Actions Innovative Training Network H2020 MSCA ITN, grant agreement number 813196.

FindMyApps eHealth intervention improves quality, not quantity, of home tablet use by people with dementia.

Introduction: FindMyApps is a tablet-based eHealth intervention, designed to improve social health in people with mild dementia or mild cognitive impairment. Methods: FindMyApps has been subject to a randomized controlled trial (RCT), Netherlands Trial Register NL8157. Following UK Medical Research Council guidance, a mixed methods process evaluation was conducted. The goal was to investigate the quantity and quality of tablet use during the RCT, and which context, implementation, and mechanisms of impact (usability, learnability and adoption) factors might have influenced this. For the RCT, 150 community dwelling people with dementia and their caregivers were recruited in the Netherlands. For the process evaluation, tablet-use data were collected by proxy-report instrument from all participants' caregivers, FindMyApps app-use data were registered using analytics software among all experimental arm participants, and semi-structured interviews (SSIs) were conducted with a purposively selected sample of participant-caregiver dyads. Quantitative data were summarized and between group differences were analyzed, and qualitative data underwent thematic analysis. Results: There was a trend for experimental arm participants to download more apps, but there were no statistically significant differences between experimental and control arm participants regarding quantity of tablet use. Qualitative data revealed that experimental arm participants experienced the intervention as easier to use and learn, and more useful and fun than control arm participants. Adoption of tablet app use was lower than anticipated in both arms. Conclusions: A number of context, implementation and mechanism of impact factors were identified, which might explain these results and may inform interpretation of the pending RCT main effect results. FindMyApps seems to have had more impact on the quality than quantity of home tablet use.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial.

PURPOSE: FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored. MATERIALS AND METHODS: An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia's self-management, meaningful activities and social participation, caregiver's sense of competence and both their quality of life. RESULTS AND CONCLUSIONS: No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.IMPLICATIONS FOR REHABILITATIONThe FindMyApps program is feasible for people with dementia/MCI and may have potential to improve their self-management and social participation.Informal caregivers may develop a more positive care experience when utilizing FindMyApps to find suitable apps for self-management and social participation for the person with dementia/MCI.

Can Use of Digital Technologies by People with Dementia Improve Self-Management and Social Participation? A Systematic Review of Effect Studies.

There is increasing interest in the use of technology to support social health in dementia. The primary objective of this systematic review was to synthesize evidence of effectiveness of digital technologies used by people with dementia to improve self-management and social participation. Records published from 1 January 2007 to 9 April 2020 were identified from Pubmed, PsycInfo, Web of Science, CINAHL, and the Cochrane Central Register of Controlled Trials. Controlled interventional studies evaluating interventions based on any digital technology were included if: primary users of the technology had dementia or mild cognitive impairment (MCI); and the study reported outcomes relevant to self-management or social participation. Studies were clustered by population, intervention, and outcomes, and narrative synthesis was undertaken. Of 1394 records identified, nine met the inclusion criteria: two were deemed to be of poor methodological quality, six of fair quality, and one of good quality. Three clusters of technologies were identified: virtual reality, wearables, and software applications. We identified weak evidence that digital technologies may provide less benefit to people with dementia than people with MCI. Future research should address the methodological limitations and narrow scope of existing work. In the absence of strong evidence, clinicians and caregivers must use their judgement to appraise available technologies on a case-by-case basis.

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.

Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia.

OBJECTIVES: To assess neuropsychiatric symptoms and quality of life in a group of patients in the final phase of dementia. METHODS: All patients with dementia (n = 216) residing on dementia special care units of two Dutch nursing homes were included in the study provided they met the criteria for the final phase of dementia. Neuropsychiatric symptoms were assessed with the Neuropsychiatric Inventory Nursing Home version (NPI-NH) and the Cohen Mansfield Agitation Inventory (CMAI). Quality of life was assessed with the QUALIDEM. RESULTS: Of the 216 dementia patients 39 met the criteria for the final phase of dementia. The patients showed a specific pattern of behaviours with a high prevalence of apathy, agitation and behaviours that were mainly observed during morning care such as making strange noises, grabbing, performing repetitious mannerism, spitting, hitting, screaming and pushing. Overall quality of life of these patients in the final phase of dementia was moderate. CONCLUSION: In this small sample, patients in the final phase of dementia show specific behavioural problems, that mainly should be addressed with psychosocial interventions.

Quality of life in dementia: do professional caregivers focus on the significant domains?

The domains of quality of life that are considered important by people with dementia and professional caregivers are not in agreement. This explorative study addresses the question, "To what degree do professional caregivers, in their daily working routine, focus on the quality-of-life domains that people with dementia consider essential?" Study participants were nursing assistants who work in 24-hour nursing home care and professionals who offer daytime activities. Three hundred and seventy-four caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire. The caregivers reported to focus at least to some degree on most domains considered important by people with dementia. However, relatively little attention was paid to "financial situation" and "being useful/giving meaning to life." Professionals who offer daytime activities focused more than 24-hour care staff on "attachment," "enjoyment of activities," "sense of aesthetics," and "being useful/giving meaning to life."

QUALIDEM: development and evaluation of a dementia specific quality of life instrument. Scalability, reliability and internal structure.

OBJECTIVE: To develop a Quality of Life questionnaire rated by professionals that can be used for people with dementia in different stages of the disease, living in residential settings. METHOD: Development was performed in two phases: item generation and pilot testing, and a field survey to evaluate the psychometric properties. For unidimensionality we used a non-parametric model from item response theory: the Mokken scaling model, and computed the corresponding scalability coefficients, using a theory driven strategy. RESULTS: The pilot survey resulted in a list of 49 items. The field survey was performed in a sample of 238 people with dementia residing in ten nursing homes. The scalability of the subscales positive affect, negative affect, restless tense behavior, and social relations is strong (0.50 < H < 0.63); for care relationship, positive self image, feeling at home, and having something to do, scalability was moderate (0.40 < H < 0.49), and for social isolation it was weak (H = 0.34). The reliability coefficient Rho (under assumption of double monotonicity) varied from 0.60 for social isolation to 0.90 for positive affect (Cronbach's alpha varied from 0.59 to 0.89). Twenty-one of 40 items are suited for people with very severe dementia. CONCLUSION: The QUALIDEM is an easy to administer and sufficiently reliable rating scale that provides a QOL profile of persons with dementia in residential settings. The QUALIDEM can be used for evaluation as well as for research and practice innovation.

QUALIDEM: development and evaluation of a dementia specific quality of life instrument--validation.

OBJECTIVE: To validate the QUALIDEM, a quality of life measure for people with dementia within residential settings rated by professional caregivers. METHOD: In a sample of 202 residents of nursing homes Spearman rank correlations were calculated between the QUALIDEM subscales aand indices of convergent validity and discriminant validity, with dementia severity and need of care, with global QOL scores by the head nurse and family, and with self-report on COOP/WONCA Charts. RESULTS: The one-method multi-trait matrix showed 90.5% of the correlations to be in support for convergent and discriminant validity. Low to moderate correlations were observed with dementia severity and need of care, confirming that QOL is not merely disease severity. Support for concurrent validity was found in correlations with QOL ratings by the head nurse. The QUALIDEM did not correlate with most of the family ratings or with the COOP/WONCA Charts. CONCLUSION: The results of this validation study together with the obtained content validity through the method of construction provide sufficient support for validity of the QUALIDEM to be used for care evaluation and research in residential settings.

Evaluating the outcome of interventions on quality of life in dementia: selection of the appropriate scale.

BACKGROUND: A literature study was conducted to contribute to an adequate use of quality of life (QoL) instruments for the evaluation of interventions in dementia care by providing an overview of properties of QoL measures that acknowledge domains important to dementia patients. METHODS: Domains important to patients, and domains that professional caregivers in different settings focus on, are compared to domains represented in nine QoL instruments. Data on psychometrics and applicability are generated. RESULTS: Four instruments best represent domains of QoL important to patients and domains professional caregivers in 24-h care and daytime activities focus on. Two are self-rating instruments: Schedule for the Evaluation of Individual Quality of Life, applicable in mild dementia, measuring individual QoL of patient and informal caregiver, and Quality of Life-Alzheimer's Disease Scale, which can be applied up to moderately severe dementia. For patients with advanced dementia receiving residential care, the observational instruments Qualidem and Discomfort scale-Dementia of Alzheimer Type are recommended. The first is easily administered by nurse assistants or occupational therapists and covers several QoL domains on which they focus in daily practice. The second can be used by various professionals. CONCLUSIONS: QoL assessment provides a format for patients and (in)formal caregivers to express whether an intervention has made an important difference to the patient's life. Improvement of QoL in dementia should have high priority in care, treatment and research. This study shows that severity of dementia, care type, setting, and the specific QoL domains an intervention focuses on, determine which QoL instrument is most appropriate in a specific situation.

A review of quality of life instruments used in dementia.

OBJECTIVE: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties. METHOD: Literature research. RESULTS: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures. CONCLUSION: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required.

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.