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Informal carers' experience of assistive technology use in dementia care at home: a systematic review.

ABSTRACT: BACKGROUND:Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology. METHODS:A systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs. RESULTS:The studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied. CONCLUSIONS:The intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model. SYSTEMATIC REVIEW REGISTRATION:PROSPERO - CRD42017082268 .

SUBMITTER: Sriram V

PROVIDER: S-EPMC6567448 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Informal carers' experience of assistive technology use in dementia care at home: a systematic review.

Sriram Vimal V Jenkinson Crispin C Peters Michele M

BMC geriatrics 20190614 1

<h4>Background</h4>Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact ...[more]

PMID: 31196003

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Project description:BACKGROUND:Dementia is one of the greatest health and care priorities globally. Caring for persons with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use AT. METHOD:MEDLINE, Embase, CINAHL, AMED, ALOIS, PsycINFO, Trial registries and OpenGrey databases will be searched for studies of any design that have investigated carer experience and/or outcomes of AT use for persons with dementia living at home. Manual searches from reference lists of relevant papers will also be undertaken. Outcomes of interest are carers' self-reported outcomes (which include perceived burden, quality of life and wellbeing) and carer experiences (such as usefulness, benefits and disadvantages of AT and impact on caregiver/care receiver relationship). Two independent reviewers will screen identified papers with pre-defined eligibility criteria and extract data using a bespoke extraction form. Discrepancies will be resolved in discussion with a third reviewer. A synthesis of eligible studies and summary will be provided. DISCUSSION:A systematic review of quantitative, qualitative and mixed methods evidence of informal carers' experience of AT use in dementia in the community will be carried out. It is anticipated that this will highlight (1) investigations on impact of AT use on carers, (2) outcome measures and experience questionnaires that have been used and (3) the types of studies carried out so far on this topic. The results from the review will be presented in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care and also identify AT that is not usually available through government or health system funding. SYSTEMATIC REVIEW REGISTRATION:PROSPERO CRD42017082268 .

Project description:BackgroundAssistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life.MethodsA cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions.ResultsData from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores.ConclusionsCarers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia.

Project description:We describe the use of rapid cycle tests of change to pretest and develop a Carers Assistive Technology Experience Questionnaire for a survey of informal carers of persons with dementia. The Plan-Do-Study-Act (PDSA) cycle is a commonly used improvement process in healthcare settings. We used this method for conducting rapid cycle tests of change through cognitive interviews to pretest the questionnaire. The items for the questionnaire were developed based on an earlier systematic review and qualitative study. PDSA cycles were used incrementally with learning from each cycle used to inform subsequent changes to the questionnaire prior to testing on the next participant.DesignQualitative with use of cognitive interviews through rapid cycle tests of change.SettingUK.ResultsNine participants were recruited based on eligibility criteria and purposive sampling. Cognitive interviewing using think aloud and concurrent verbal probing was used to test the comprehension, recall, decision and response choice of participants to the questionnaire. Seven PDSA cycles involving the participants helped identify problems with the questionnaire items, instructions, layout and grouping of items. Participants used a laptop, smartphone and/or tablet computer for testing the electronic version of the questionnaire and one participant also tested the paper version. A cumulative process of presenting items in the questionnaire, anticipating problems with specific items and learning from the unanticipated responses from participants through rapid cycle tests of change allowed rich learning and reflection to progressively improve the questionnaire.ConclusionUsing rapid cycle tests of change in the pretesting questionnaire phase of research provided a structure for conducting cognitive interviews. Learning and reflections from the rapid testing and revisions made to the questionnaire helped improve the process of reaching the final version of the questionnaire, that the authors were confident would measure what was intended, rapidly and with less respondent burden.

Project description:Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all. Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis. Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management. Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.

Project description:OBJECTIVE:With an elderly population that is set to more than double by 2050 worldwide, there will be an increased demand for elderly care. This poses several impediments in the delivery of high-quality health and social care. Socially assistive robot (SAR) technology could assume new roles in health and social care to meet this higher demand. This review qualitatively examines the literature on the use of SAR in elderly care and aims to establish the roles this technology may play in the future. DESIGN:Scoping review. DATA SOURCES:Search of CINAHL, Cochrane Library, Embase, MEDLINE, PsychINFO and Scopus databases was conducted, complemented with a free search using Google Scholar and reference harvesting. All publications went through a selection process, which involved sequentially reviewing the title, abstract and full text of the publication. No limitations regarding date of publication were imposed, and only English publications were taken into account. The main search was conducted in March 2016, and the latest search was conducted in September 2017. ELIGIBILITY CRITERIA:The inclusion criteria consist of elderly participants, any elderly healthcare facility, humanoid and pet robots and all social interaction types with the robot. Exclusions were acceptability studies, technical reports of robots and publications surrounding physically or surgically assistive robots. RESULTS:In total, 61 final publications were included in the review, describing 33 studies and including 1574 participants and 11 robots. 28 of the 33 papers report positive findings. Five roles of SAR were identified: affective therapy, cognitive training, social facilitator, companionship and physiological therapy. CONCLUSIONS:Although many positive outcomes were reported, a large proportion of the studies have methodological issues, which limit the utility of the results. Nonetheless, the reported value of SAR in elderly care does warrant further investigation. Future studies should endeavour to validate the roles demonstrated in this review. SYSTEMATIC REVIEW REGISTRATION:NIHR 58672.

Project description:BackgroundThe World Health Organization claimed that measuring outcomes is necessary to understand the benefits of assistive technology (AT) and create evidence-based policies and systems to ensure universal access to it. In clinical practice, there is an increasing need for standardized methods to track AT interventions using outcome assessments.ObjectiveThis review provides an overview of the available outcome measures that can be used at the follow-up stage of any AT intervention and integrated into daily clinical or service practice.MethodsWe systematically searched for original manuscripts regarding available and used AT outcome measures by searching for titles and abstracts in the PubMed, Scopus, and Web of Science databases up to March 2023.ResultsWe analyzed 955 articles, of which 50 (5.2%) were included in the review. Within these, 53 instruments have been mentioned and used to provide an AT outcome assessment. The most widely used tool is the Quebec User Evaluation of Satisfaction with Assistive Technology, followed by the Psychosocial Impact of Assistive Technology Scale. Moreover, the identified measures addressed 8 AT outcome domains: functional efficacy, satisfaction, psychosocial impact, caregiver burden, quality of life, participation, confidence, and usability. The AT category Assistive products for activities and participation relating to personal mobility and transportation was the most involved in the reviewed articles.ConclusionsAmong the 53 cited instruments, only 17 (32%) scales were designed to evaluate specifically assistive devices. Moreover, 64% (34/53) of the instruments were only mentioned once to denote poor uniformity and concordance in the instruments to be used, limiting the possibility of comparing the results of studies. This work could represent a good guide for promoting the use of validated AT outcome measures in clinical practice that can be helpful to AT assessment teams in their everyday activities and the improvement of clinical practice.

Project description:BackgroundWe aim to describe the health-related quality of life of informal carers and their experiences of primary care.MethodsResponses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).ResultsInformal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.ConclusionsInformal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

Dataset Information

Informal carers' experience of assistive technology use in dementia care at home: a systematic review.

Publications

Informal carers' experience of assistive technology use in dementia care at home: a systematic review.

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