...or stigma; some groups are more at risk of not accessing information that would be relevant to them, including people caring for children with additional support needs, carers not in employment and/or seeking employment, young carers and carers of people living with dementia; language barriers, sensory impairments and limited internet access are also identified as potential barriers to accessing
(Edited publisher abstract)
The focus of this rapid review is on the barriers and enablers to accessing carers’ needs assessments in Wales and is part of the continued work to understand how to improve the quality and consistency of support for unpaid carers as identified in the Strategy for Unpaid Carers (Welsh Government, 2021). The review explores the barriers and enablers to accessing a carers’ needs assessment as well as the experiences of those who have had an assessment. It covers the period from 2016 – whilst there is some information in relation to the period since the 2020 COVID-19 lockdown, most of the literature and information predates the pandemic. A specific COVID-19 section reports evidence from this period. Key findings include: most of the literature and evidence in relation to carers’ needs assessments relates to adults rather than young carers – additionally, there is little evidence in relation to COVID-19 and assessment processes, but rather more general information about support for unpaid carers; barriers to accessing assessments includes unpaid carers not identifying themselves as such, because they see caring as part of their familial/spousal role or because they, or the person they care for, feels shame or stigma; some groups are more at risk of not accessing information that would be relevant to them, including people caring for children with additional support needs, carers not in employment and/or seeking employment, young carers and carers of people living with dementia; language barriers, sensory impairments and limited internet access are also identified as potential barriers to accessing information; enablers to accessing assessment include an effective first point of contact with highly-trained staff, well-designed online resources, and carers’ groups where carers can get peer support to navigate the system; third sector organisations play an essential role in identifying and providing support to carers.
(Edited publisher abstract)
Subject terms:
Covid-19, carers assessment, young carers, access to information, access to services, carers, needs assessment;
Great Britain. Department of Health and Social Care
Publication year:
2021
Pagination:
43
Place of publication:
London
This guidance sets out good practice for working people living with dementia, suggesting ways in which professionals can provide quality safeguarding and best involve people in decision-making. It is split into two parts. Part 1 provides a summary of the evidence. This focusses on research findings about the abuse and neglect of people living with dementia. It also looks at evidence around how...
(Edited publisher abstract)
This guidance sets out good practice for working people living with dementia, suggesting ways in which professionals can provide quality safeguarding and best involve people in decision-making. It is split into two parts. Part 1 provides a summary of the evidence. This focusses on research findings about the abuse and neglect of people living with dementia. It also looks at evidence around how professionals and people living with dementia view the topic of risk. The legal and policy frameworks are then briefly set out, with reference to human rights, the Care Act 2014, the Mental Capacity Act 2005 and Making Safeguarding Personal. Part 2 of the guidance focusses on what might be done to support people living with dementia to be involved in the prevention of abuse and neglect and in finding resolution where it occurs. This section takes the form of ‘top-tips’. It is informed by consultation with people living with dementia, family and paid carers, social workers and other health and social care professionals. This guidance has primarily been written to inform the work of social workers undertaking safeguarding work with people living with dementia. However, whilst social services are the lead agency, safeguarding work may be delegated to other health and social care professionals such as nurses, occupational therapists, doctors and domiciliary care workers and this guidance may also inform their practice.
(Edited publisher abstract)
Subject terms:
dementia, safeguarding adults, access to information, strengths-based approach, decision making, advocacy, user participation;
...target groups (older people, people with dementia, people with complex disabilities or long-term conditions, people experiencing homelessness, and people with mental health problems). We also identified a wealth of community-based associated services in addition to day centres, such as lunch-clubs, drop-in cafes or advisory services that are open for shorter times or by appointment. The research
(Edited publisher abstract)
This research was undertaken to better understand day services in south London as an essential part of social care pre-Covid 19. Between January and September 2020, we collected information about day services for adults with diverse social care needs across four south London boroughs (Kingston, Lambeth, Lewisham and Merton). Altogether, 65 day services were identified as serving five of our six target groups (older people, people with dementia, people with complex disabilities or long-term conditions, people experiencing homelessness, and people with mental health problems). We also identified a wealth of community-based associated services in addition to day centres, such as lunch-clubs, drop-in cafes or advisory services that are open for shorter times or by appointment. The research process itself revealed how hard it was to identify day services for certain groups, including for people with long-term disabilities and older people, when primarily using the internet. Furthermore, the regular changes to day services mean that information often becomes out of date, with various services or activities being altered, shut or moved, with limited information on where future enquiries should be directed. Information needs to be more accessible, so that potential service users and their carers can find and use information on day services online. Potential volunteers need such information too. This is also a time when new services such as social prescribing are developing and their staff will need accurate information about local services to avoid wasting their time and others’. This map of day services across the four south London boroughs, although not exhaustive, will be a baseline for research into services during and after the Covid-19 pandemic. Services that offer company to people who are not generally able to access other community facilities should be in a prime position to help rebuild wellbeing and reduce the harms and risks of loneliness.
(Edited publisher abstract)
Subject terms:
day centres, dementia, access to information, social prescribing, loneliness, access to services, older people, mental health, disabilities, homelessness;
Ageing and Society, early cite November 2021, pp.1-27.
Publisher:
Cambridge University Press
The primary aim of this scoping review was to explore the contribution of housing adaptations to supporting everyday life for people with dementia living at home in the community. The study adopted a scoping review methodology which was guided by the Joanna Briggs Institute Reviewers Manual. Four review questions were developed which subsequently informed the inclusion criteria and search terms...
(Edited publisher abstract)
The primary aim of this scoping review was to explore the contribution of housing adaptations to supporting everyday life for people with dementia living at home in the community. The study adopted a scoping review methodology which was guided by the Joanna Briggs Institute Reviewers Manual. Four review questions were developed which subsequently informed the inclusion criteria and search terms. Eight databases were searched resulting in 2,339 records, with 13 papers being included in the review. Evidence from the review found that the most common adaptations were recommended and/or implemented to compensate for a person's physical limitations and for safety reasons, rather than adaptations to support activities of daily living for a person with dementia. Support to implement adaptations was provided by a range of professionals coupled with ‘trial and error’ approaches adopted by the person themselves, and these were seen as key enablers. Barriers to implementing and using adaptations were fourfold: (a) access to information, (b) knowing when to make changes, (c) carer resistance, and (d) the unsuitability of the home. It would appear that housing adaptations have a positive impact on both the person with dementia and the carer (where one is present), with some adaptations having a relatively sustained impact and being particularly effective if implemented early in the lived trajectory of dementia.
(Edited publisher abstract)
Subject terms:
literature reviews, assistive technology, home care, dementia, home adaptations, housebound people, home safety, access to information;
Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant...
(Edited publisher abstract)
Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations. Design/methodology/approach: A co-production approach between industry and academia included stakeholder representation from NHS Highland and Alzheimer Scotland. Dementia care experts validated items to be included for symptom monitoring and tracking using a newly developed A2BC2D2EF2 framework as part of this project and recommended additional strategies for monitoring symptom change, including carer well-being. Findings: Dementia care experts perceived the symptom monitoring and track feature to have the potential to support family carers with dementia care at home and foster a relationship-centred approach to dementia care to facilitate meaningful hospital/social care consultations. Originality/value: The CogniCare app is the first platform of its kind that aims to support family carers to care for people living with dementia at home. This unique service development collaborative combined dementia and digital expertise to create innovative digital solutions for dementia care. The proposed monitoring and tracking feature is perceived by dementia care experts as a tool with the potential to enhance carer confidence and thus enable safe and effective dementia care within the home environment.
(Edited publisher abstract)
Subject terms:
dementia, access to information, digital technology, computer apps, carers, relationships;
Dementia: the International Journal of Social Research and Practice, 20(4), 2021, pp.1250-1269.
Publisher:
Sage
Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them...
(Edited publisher abstract)
Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative’s end-of-life and assist them to make decisions about care along the dementia trajectory. Methods: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings: Eight substantive categories essential to meeting family members’ needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.
(Edited publisher abstract)
Subject terms:
nursing homes, dementia, carers, end of life care, access to information, information services;
Dementia: the International Journal of Social Research and Practice, 19(5), 2020, pp.1381-1396.
Publisher:
Sage
Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically...
(Publisher abstract)
Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.
(Publisher abstract)
Subject terms:
dementia, carers, social care provision, deafness, family support, family relations, access to information;
Aging and Mental Health, 24(7), 2020, pp.1161-1166.
Publisher:
Taylor and Francis
Objectives: Educational programs on dementia may backfire, as recipients could feel more negatively about people with dementia after exposure to the alarming symptoms (e.g., behavioral and psychological symptoms of dementia, or BPSD). This study aimed to investigate whether such exposures had any effect on stigma. Methods: 200 adults aged 18–83 years were randomly assigned to three groups...
(Publisher abstract)
Objectives: Educational programs on dementia may backfire, as recipients could feel more negatively about people with dementia after exposure to the alarming symptoms (e.g., behavioral and psychological symptoms of dementia, or BPSD). This study aimed to investigate whether such exposures had any effect on stigma. Methods: 200 adults aged 18–83 years were randomly assigned to three groups. The first group read vignettes describing fictitious older adults with memory impairment. The second group read the same vignettes that were expanded to include descriptions of BPSD (i.e., memory impairment cum BPSD). After reading the vignettes, both groups answered questions about stigma, while the third group directly responded to this questionnaire without reading any vignette (i.e., not exposed to experimental manipulation). ANOVA was performed to analyze the effect of experimental manipulation, as well as that of age, education, whether having relatives with dementia, and belief about treatability of dementia.Results: At posttest, the level of stigma was moderate and was comparable across the three groups, suggesting that exposures to information about cognitive and behavioral symptoms did not change people’s stigmatizing attitude. The absence of group effect in stigma did not vary by age, education, whether having a relative with dementia, or belief about prognosis. Only the main effects of age and education were significant, where younger and least educated participants reported higher stigma. Conclusion: There was no evidence that stigma would be affected by exposure to information about symptoms of dementia, including the more disturbed ones (i.e., BPSD).
(Publisher abstract)
Subject terms:
dementia, stigma, access to information, behaviour and psychology, conduct disorders;
Dementia: the International Journal of Social Research and Practice, 19(3), 2020, p.766–785.
Publisher:
Sage
Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia...
(Publisher abstract)
Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia and their carers consider the available sources of information; and to determine how people with dementia and their carers would like to receive information. An online or postal survey was completed by 171 female and 41 male participants with a close family member or friend with dementia. Accessibility above quality held the greatest influence over an individual’s use of an information source. Participants preferred relational sources such as healthcare professionals as these were able to give individualised information, yet these were poorly accessible and lacked dementia specific knowledge. Therefore, individuals used non-relational sources such as the internet. However, increased use of the internet was linked to feeling overwhelmed by information. It was not the end result of the information search but the effort taken to reach the information that influenced participant’s perception of information gathering. Future research should look at ways of designing and providing accessible information sources that act and feel like relational contact.
(Publisher abstract)
Subject terms:
dementia, internet, surveys, information needs, access to information, carers;
Health Expectations, 23(6), 2020, pp.1412-1419. Online only
Publisher:
Wiley
Background: Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms...
(Edited publisher abstract)
Background: Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. Objective: To identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands. Design: Semi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis. Setting and participants: Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings. Results: Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. Conclusion: This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.
(Edited publisher abstract)
Subject terms:
access to information, dementia, home care, carer views, user views, social networks, access to services;