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Purpose: This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach: The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown. Findings: Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant's ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation. Research limitations/implications: The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies. Practical implications: Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity. Originality/value: Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia. [ABSTRACT FROM AUTHOR]

Purpose: A growing body of research seeks to include people with dementia as both participants and co-designers. It is also increasingly recognized that dementia research must pay greater attention to informal care, provided by family and friends in non-institutional settings, because this is the situation of most people affected by dementia. Accessing these kinds of naturalistic care sites through meaningfully inclusive studies can be challenging for researchers in many fields. The paper aims to discuss this issue. Design/methodology/approach: This paper describes a methodology designed to facilitate meaningful inclusion and access to hard-to-reach dementia care networks. It describes the implementation of this methodology in the field, the problems that emerged and the lessons learned. Findings: A two-step sampling approach was used. People with dementia were sampled through organizations unrelated to dementia. Care networks were sampled through ecomapping with people with dementia. The strategy successfully accessed the desired population, but it was labour-intensive and biased the sample in several respects. Originality/value: It is hoped that this outline will encourage further reflection and discussion regarding methodological approaches to complex sampling and recruitment issues in dementia research. [ABSTRACT FROM AUTHOR]

Purpose – People with Down's syndrome are at increased risk of developing early onset Alzheimer's disease. It has been recommended that all adults with Down's syndrome receive baseline neuropsychological testing for dementia. In certain areas prospective screening of people with Down's syndrome takes place to ensure the early diagnosis of the condition. However, little has been published on the value of this type of screening. The purpose of this paper is to report on a prospective screening programme and asks whether the programme is effective in identifying dementia-related changes in people with Down's syndrome and whether the current screening intervals are appropriate. Design/methodology/approach – All adults with Down's syndrome in Plymouth (UK) are identified and offered a comprehensive test battery at baseline at the age of 20 and then have testing biennially from 40 to 50 and annually after 50. All individuals diagnosed with dementia between 2001 and 2013 were identified and their case notes examined. The symptoms at the time of diagnosis were identified and whether these symptoms had been identified through the screening programme or by other routes were recorded. Prevalence data and age at diagnosis were also recorded. Findings – In total, 26 people were diagnosed with dementia during the study period. Of these, the diagnosis of dementia followed concerns being identified during the routine screening programme in 54 per cent of cases. In the younger age group (age 40-49) 63 per cent of people were identified through the screening programme. At the time of diagnosis a mean of 5.5 areas of concern were in evidence. Research limitations/implications – Limited by small sample size, however service development not original research. Implications for the use of prospective dementia screening in people with Down's syndrome. Practical implications – Implications for how services choose to run their Down's syndrome and dementia screening programmes, including the frequency of screening. Originality/value – The paper adds to a growing evidence base around the value of prospective dementia screening in people with Down's syndrome. It is also one of a few studies exploring the frequency of screening. Additionally, it adds further data about prevalence of dementia in people with Down's syndrome. [ABSTRACT FROM AUTHOR]

Purpose: The purpose this paper is to explore walking with purpose in extra care, retirement and domestic housing settings to better understand and support people living with dementia in these settings, develop recommendations and inform practice. Design/methodology/approach: A mixed-methods study was used: scoping literature review; online survey of extra care and retirement housing managers in the UK; case studies involving interviews with staff and family carers (n = 14) of ten individuals who engaged in walking with purpose in the different housing settings. Findings: Although residents who walk with purpose constitute a minority (0–2 residents), managing walking with purpose can be challenging and time consuming. Distraction or redirection was the most common response. Other strategies included identifying the resident's motivations and accommodating their wishes or walking with them. Culture of care, staff training and dementia-friendly design are keys to effective support for safe walking with purpose. Responses to walking with purpose in the domestic housing settings have raised serious deprivation of liberty issues. Research limitations/implications: This study had a number of limitations. The completed survey questionnaires represent a self-selected sample of extra care and retirement housing settings, and responses are based on the perceptions of the staff members completing the survey. There were a relatively small number of case study sites (three extra care housing and three retirement housing), and it was not possible to interview family members for all of the residents who walked with purpose. Originality/value: This study provides unique data on walking with purpose in extra care and retirement housing setting in the UK. [ABSTRACT FROM AUTHOR]

Purpose -- The purpose of this paper is to explore audiologists, views and experiences of working with older adults with dementia. Design/methodology/approach -- An online survey was distributed to audiologists working in the UK NHS and private sector via their professional organisations. A total of 312 audiologists took part in the study. The survey collected both quantitative and qualitative data. Basic descriptive statistics summarised the quantitative responses. The qualitative data were analysed using conventional thematic approaches. Findings -- The quantitative data demonstrated that the vast majority of audiologists had treated someone with dementia (96 per cent). Despite this, 65 per cent of respondents did not feel adequately supported to help this service user population. Four overarching themes were used to explain the qualitative data: integrated and individualised care; formal (including training) vs experiential knowledge; the interaction between dementia and hearing and using the technology. Research limitations/implications -- The self-selecting nature of the sample is a limitation which needs to be taken into account when considering the transferability and implications of the findings. Practical implications -- Given the anticipated increase in rates of dementia within the population and the potential for hearing impairment to exacerbate the symptoms; this study highlights the unique role audiologists have. The need for more training and development for this professional group is also identified. Originality/value -- This is one of the first papers to explore audiologists, views and experiences of working with people with dementia. As such, it highlights some interesting areas worthy of further research using both quantitative and qualitative methods. [ABSTRACT FROM AUTHOR]

Purpose – Financial abuse of people with dementia is of rising concern to family carers, the voluntary sector and professionals. Little is known about preventative and early response practice among community services staff. The purpose of this paper is to investigate voluntary sector staff's views of the risks of managing money when a person has a dementia and explore ways that individuals may be protected from the risks of financial abuse. Design/methodology/approach – An online survey of staff of local Alzheimer's Society groups across England was conducted in 2011 and was completed by 86 respondents. Open-ended responses supplemented survey questions. Statistical analysis and content analysis identified emergent findings. Findings – Most respondents said their people with dementia experienced problems with money management, with almost half the respondents reporting encountering cases of financial abuse over the past year. Most were alert to warning signs and vulnerabilities and offered suggestions relevant to practice and policy about prevention and risk minimization. Research limitations/implications – Adult safeguarding practitioners are likely to encounter money management uncertainties and concerns about exploitation of people with dementia. They may be contacted by community-based support staff from the voluntary sector about individual queries but could ensure that such practitioners are engaged in local training and networking activities to promote their skills and confidence. Practical implications – As with other forms of elder abuse, professionals need to be aware of risks of financial abuse and be able to suggest effective yet acceptable preventive measures and ways to reduce risks of harm and loss. Further publicity about adult safeguarding services may be needed among local community support services. Originality/value – There have been few studies investigating the views of people working with people with dementia in the community about adult safeguarding. [ABSTRACT FROM AUTHOR]

Purpose: Deaf people, who are British Sign Language (BSL) users, are, at times, carers for their parent or spouse when they have dementia. This can be a challenging role for the wider population, but if the common language in service provision is not one you share, then this care can be impacted by the lack of formal structures that support the Deaf caring role. This study aims to explore the experiences of Deaf carers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences. Design/methodology/approach: Online interviews with seven Deaf carers sharing their experiences of supporting their family member with dementia happened during the first year of the COVID-19 pandemic. Interpretive phenomenological analysis was used to qualitatively examine each Deaf carers' stories. Findings: Findings included Deaf carers' lack of access to information, surrendering their autonomy to hearing family members to communicate with health-care professionals, with overarching isolation within local communities and online. Findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population. Research limitations/implications: Seven Deaf carers took part in this study. This means the findings may not be generalisable. Practical implications: Health-care professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care. Social implications: If health-care professionals undertake training about Deaf people and BSL, that will mean Deaf carers will receive effective support to be able to care for a person living with dementia. This means that their Deaf identity will be recognised within the mainstream and the care provided will be much more effective for the person with dementia. Originality/value: To the best of the authors' knowledge, these are the first interviews undertaken with Deaf carers of people with dementia during the COVID-19 pandemic and its subsequent lockdowns. Understanding everyday barriers and social care limitations in terms of language access will enable Deaf carers to assert their rights and for care professionals to adapt their communication to match the individuals involved in the care package. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to explore the coping styles that can be inferred from the discourse of dyads with dementia, and how these appear to impact on care management. Design/methodology/approach: This was a case study approach. Participants were recruited from two teams managing crisis in dementia in the UK. The authors conducted multiple qualitative interviews with people with dementia and their family carers over the course of one month. The analysis was first performed through thematic analysis. Data were further analysed through narrative inquiry to create a story line, or play in our case, for our findings. Findings: Five dyads were interviewed and a total of 16 interviews were conducted. Three dyads were husband–wife and two were daughter–mother relationships. The mean age was 67.4 years for carers and 79.8 years for people with dementia. In these cases, the carer assumed responsibility for managing the episode and was more likely to seek formal help if a pre-existing plan was in place. Otherwise, when a crisis arose, dyads preferred to avoid involving professionals. Practical implications: Psychosocial interventions should aim to identify and replace unhelpful strategies used by dyads to manage crisis episodes. Originality/value: To the best of the authors' knowledge, this is the first study using qualitative interviews of dyads to inquire into their experience of mental health crisis. [ABSTRACT FROM AUTHOR]