Measuring Awareness in People With Dementia: Results of a Systematic Scoping Review.
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ABSTRACT: Background
Awareness of the diagnosis or related changes in functioning varies in people with dementia (PwD), with implications for the well-being of PwD and their carers. Measuring awareness in a clinical setting could facilitate tailored support and optimize involvement in personal health and care decisions. This scoping review aimed to identify validated methods of assessing awareness in dementia and appraise their clinical utility.Method
A systematic search was conducted of English-language publications that measured awareness in PwD, in 6 electronic databases. Search terms included dement*, Alzheimer*, Pick disease, and awareness, unawareness, anosognosia, insight, denial, metacognit*, or discrepanc*.Results
We screened 30,634 articles, finding 345 articles that met our inclusion criteria. We identified 76 measures, most commonly using a discrepancy questionnaire comparing evaluations of function by PwD and an informant. There were 30 awareness measures developed and validated for use in dementia populations but few designed for general clinical use.Conclusions
Although we found a range of clinical indications for measuring awareness, there were few studies investigating clinical applications and few tools designed for clinical purposes. Further investigation and development of a person-centered tool could facilitate health and care choices in mild-to-moderate dementia.
SUBMITTER: Alexander CM
PROVIDER: S-EPMC8326902 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:People with dementia (PwD) vary in the degree of awareness they show about their situation, both generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack of awareness has consequences for well-being of PwD and carers, impacting on rates of hospital admission, institutionalization, mood, adjustment to diagnosis, outcomes from intervention and carer burden. An accurate estimation of a person's awareness could therefore be useful in a clinical setting to support PwD and their carers in making appropriate choices for health and care decisions, and could facilitate safe management by health care professionals, e.g. in an acute care setting. There is a range of different approaches to measuring awareness reported in the dementia research literature, with varying estimates of the frequency of lack of awareness, reflecting different methodologies and populations. The majority of the methods have been developed for research purposes and may not be suitable for clinical use. There are no recent scoping or systematic reviews of the available methods. METHOD:We will conduct a scoping review of published studies that have assessed awareness in people with dementia of all types, and all degrees of severity. The systematic search will include the electronic databases PubMed, Embase, PsycInfo, CINAHL, Web of Science and Cochrane Library, using search terms for dementia ("dement*" or "Alzheimer*" or "Pick's disease") and "awareness", "unawareness", "anosognosia", "insight", "denial", "metacognit*" or "discrepanc*" identified from pilot searches. Findings will be mapped and described according to the method used, the setting and diagnosis and the object of awareness studied if specified. Validated measures will be identified. DISCUSSION:This scoping review will provide an overview of the methods used to measure awareness in people with dementia, allowing comparison of the methods along with identification of validated measures. The methods or components will be appraised for potential clinical use, and gaps in research will be highlighted.
| S-EPMC6610918 | biostudies-literature
Project description:BackgroundEnabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.MethodsThree scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined.FindingsSix conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia.ConclusionAn assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.
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Project description:INTRODUCTION:Dementia is the fastest growing major cause of disability globally and may have a profound impact on the health-related quality of life (HRQoL) of both the patient with dementia and those who care for them. This review aims to systematically identify and synthesise the measurements of HRQoL for people with, and their caregivers across the full spectrum of, dementia from its preceding stage of predementia to end of life. METHODS AND ANALYSIS:A systematic literature review was conducted in Medical Literature Analysis and Retrieval System Online , ExcerptaMedicadataBASE, Cochrane Database of Systematic Reviews , Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effect, National Health Service Economic Evaluation Database and PsycINFO between January 1990 and the end of April 2017. Two reviewers will independently assess each study for inclusion and disagreements will be resolved by a third reviewer. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed with the Effective Public Health Practice Project quality assessment tool. HRQoL measurements will be presented separately for people with dementia and caregivers by instrument used and, when possible, HRQoL will be reported by disease type and stage of the disease. Descriptive statistics of the results will be provided. A narrative synthesis of studies will also be provided discussing differences in HRQoL measurements by instrument used to estimate it, type of dementia and disease severity. ETHICS AND DISSEMINATION:This systematic literature review is exempt from ethics approval because the work is carried out on published documents. The findings of the review will be disseminated in a related peer-reviewed journal and presented at conferences. They will also contribute to the work developed in the Real World Outcomes across the Alzheimer's disease spectrum for better care: multimodal data access platform (ROADMAP). TRIAL REGISTRATION NUMBER:CRD42017071416.
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Project description:BackgroundAlcohol use has been identified as a risk factor for dementia and cognitive decline. However, some patterns of drinking have been associated with beneficial effects.Methods and resultsTo clarify the relationship between alcohol use and dementia, we conducted a scoping review based on a systematic search of systematic reviews published from January 2000 to October 2017 by using Medline, Embase, and PsycINFO. Overall, 28 systematic reviews were identified: 20 on the associations between the level of alcohol use and the incidence of cognitive impairment/dementia, six on the associations between dimensions of alcohol use and specific brain functions, and two on induced dementias. Although causality could not be established, light to moderate alcohol use in middle to late adulthood was associated with a decreased risk of cognitive impairment and dementia. Heavy alcohol use was associated with changes in brain structures, cognitive impairments, and an increased risk of all types of dementia.ConclusionReducing heavy alcohol use may be an effective dementia prevention strategy.
| S-EPMC6320619 | biostudies-literature
Project description:Study objectivesSleep disturbances are a feature in people living with dementia, including getting up during the night, difficulty falling asleep, and excessive daytime sleepiness and may precipitate a person with dementia moving into residential care. There are varying estimates of the frequency of sleep disturbances, and it is unknown whether they are a problem for the individual. We conducted the first systematic review and meta-analysis on the prevalence and associated factors of sleep disturbances in the care home population with dementia.MethodsWe searched Embase, MEDLINE, and PsycINFO (29/04/2019) for studies of the prevalence or associated factors of sleep disturbances in people with dementia living in care homes. We computed meta-analytical estimates of the prevalence of sleep disturbances and used meta-regression to investigate the effects of measurement methods, demographics, and study characteristics.ResultsWe included 55 studies of 22,780 participants. The pooled prevalence on validated questionnaires of clinically significant sleep disturbances was 20% (95% confidence interval, CI 16% to 24%) and of any symptom of sleep disturbance was 38% (95% CI 33% to 44%). On actigraphy using a cutoff sleep efficiency of <85% prevalence was 70% (95% CI 55% to 85%). Staff distress, resident agitation, and prescription of psychotropic medications were associated with sleep disturbances. Studies with a higher percentage of males had a higher prevalence of sleep disturbance.ConclusionsClinically significant sleep disturbances are less common than those measured on actigraphy and are associated with residents and staff distress and the increased prescription of psychotropics. Actigraphy appears to offer no benefit over proxy reports in this population.
| S-EPMC7157185 | biostudies-literature
Project description:To summarise existing systematic reviews that assess the effects of non-pharmacological, pharmacological and alternative therapies on activities of daily living (ADL) function in people with dementia.Overview of systematic reviews.A systematic search in the Cochrane Database of Systematic Reviews, DARE, Medline, EMBASE and PsycInfo in April 2015. Systematic reviews of randomised controlled trials conducted in people with Alzheimer's disease or dementia measuring the impact on ADL function were included. Methodological quality of the systematic reviews was independently assessed by two authors using the AMSTAR tool. The quality of evidence of the primary studies for each intervention was assessed using GRADE.A total of 23 systematic reviews were included in the overview. The quality of the reviews varied; however most (65%) scored 8/11 or more on the AMSTAR tool, indicating high quality. Interventions that were reported to be effective in minimising decline in ADL function were: exercise (6 studies, 289 participants, standardised mean difference (SMD) 0.68, 95% CI 0.08 to 1.27; GRADE: low), dyadic interventions (8 studies, 988 participants, SMD 0.37, 95% CI 0.05 to 0.69; GRADE: low) acetylcholinesterase inhibitors and memantine (12 studies, 4661 participants, donepezil 10 mg SMD 0.18, 95% CI 0.03 to 0.32; GRADE: moderate), selegiline (7 studies, 810 participants, SMD 0.27, 95% CI 0.13 to 0.41; GRADE: low), huperzine A (2 studies, 70 participants, SMD 1.48, 95% CI 0.95 to 2.02; GRADE: very low) and Ginkgo biloba (7 studies, 2530 participants, SMD 0.36, 95% CI 0.28 to 0.44; GRADE: very low).Healthcare professionals should ensure that people with dementia are encouraged to exercise and that primary carers are trained and supported to provide safe and effective care for the person with dementia. Acetylcholinesterase inhibitors or memantine should be trialled unless contraindicated.CRD42015020179.
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Project description:There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross-sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi-component tailored interventions and the influence of the care-giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care-giving dyad influences nutritional care.
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Project description:BackgroundAssistive technologies for people with dementia and their relatives have the potential to ensure, improve, and facilitate home care and thereby enhance the health of the people caring or being cared for. The number and diversity of technologies and research have continuously increased over the past few decades. As a result, the research field has become complex.ObjectiveThe goal of this scoping review was to provide an overview of the research on technology-assisted home care for people with dementia and their relatives in order to guide further research and technology development.MethodsA scoping review was conducted following a published framework and by searching 4 databases (MEDLINE, CINAHL, PsycInfo, and CENTRAL) for studies published between 2013 and 2018. We included qualitative and quantitative studies in English or German focusing on technologies that support people with dementia or their informal carers in the home care setting. Studies that targeted exclusively people with mild cognitive impairment, delirium, or health professionals were excluded as well as studies that solely consisted of assessments without implication for the people with dementia or their relatives and prototype developments. We mapped the research field regarding study design, study aim, setting, sample size, technology type, and technology aim, and we report relative and absolute frequencies.ResultsFrom an initial 5328 records, we included 175 studies. We identified a variety of technology types including computers, telephones, smartphones, televisions, gaming consoles, monitoring devices, ambient assisted living, and robots. Assistive technologies were most commonly used by people with dementia (77/175, 44.0%), followed by relatives (68/175, 38.9%), and both target groups (30/175, 17.1%). Their most frequent goals were to enable or improve care, provide therapy, or positively influence symptoms of people with dementia (eg, disorientation). The greatest proportions of studies were case studies and case series (72/175, 41.1%) and randomized controlled trials (44/175, 25.1%). The majority of studies reported small sample sizes of between 1 and 50 participants (122/175, 69.7%). Furthermore, most of the studies analyzed the effectiveness (85/233, 36.5%) of the technology, while others targeted feasibility or usability or were explorative.ConclusionsThis review demonstrated the variety of technologies that support people with dementia and their relatives in the home care setting. Whereas this diversity provides the opportunity for needs-oriented technical solutions that fit individual care arrangements, it complicates the choice of the right technology. Therefore, research on the users' informational needs is required. Moreover, there is a need for larger studies on the technologies' effectiveness that could contribute to a higher acceptance and thus to a transition of technologies from research into the daily lives of people with dementia and their relatives.
| S-EPMC7857954 | biostudies-literature
Project description:Falls are the leading cause of injury and hospitalization for older adults in Canada and the second leading cause of unintentional injury deaths worldwide. For people living with dementia (PLWD), falls have an even greater impact, but the standard testing methods for fall risk screening and assessment are often not practical for this population. The purpose of this scoping review is to identify and summarize recent research, practice guidelines and gray literature which have considered fall risk screening and assessment for PLWD. Database search results revealed a dearth in the literature that can support researchers and healthcare providers when considering which option/s are the most suitable for PLWD. Further primary studies into the validity of using the various tests with PLWD are needed if researchers and healthcare providers are to be empowered via the literature and clinical practice guidelines to provide the best possible fall risk care for PLWD.
| S-EPMC10466966 | biostudies-literature
Project description:BackgroundThe daily life of informal caregivers assisting individuals with dementia widely varies throughout the day and week. As an answer, an increasing number of researchers have used intensive longitudinal methods (ILMs) such as diary studies, experience sampling methods, or ecological momentary assessment.Objectives and methodsThe present scoping review aims at synthesizing the use of ILMs in informal dementia caregivers to clarify what is currently done and how, as well as what remains unaddressed.ResultsThe screening process identified 48 studies from 22 different datasets. Synthesis of these studies showed the diversity of devices and uses of ILMs in informal care, including the exploration of associations between variables or accompanying an intervention. ILMs showed the important variability of caregiving phenomena, as well as the important association of momentary stress and well-being. Gaps were nevertheless identified, such as transparency in the construction of the tool or the absence of focus on emotions and dyads.ConclusionsFor now, this field of research remains in its infancy and does not seem to have reached its full potential as it has in other fields. Nevertheless, it appears that ILMs are promising tools for informal dementia caregivers as they contribute to understanding the complexity of their daily life, with changing resources and challenges. Future directions include focusing more on (emotion) regulation, temporal lags, and the use of ILMs in interventional designs.Trial registrationThe present review was registered on OSF (osf.io/b2qr4).
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