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1 – 10 of 923Hayley Starkey, Shelley Bevins and Simon Bonell
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…
Abstract
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.
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Alisoun Milne and Heather Wilkinson
This paper presents the findings of two research projects focusing on sharing a diagnosis of dementia. The first paper analyses the attitudes of GPs towards early diagnosis and…
Abstract
This paper presents the findings of two research projects focusing on sharing a diagnosis of dementia. The first paper analyses the attitudes of GPs towards early diagnosis and the second explores the user experience of receiving a diagnosis (Milne et al, 2000; Pratt & Wilkinson, 2001). The authors draw upon these ‐ as well as wider research ‐ in suggesting ways that diagnostic practice can be improved by taking account of the user perspective. The findings are relevant to all those professionals working in a primary care context.
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Shelley Peacock, Meridith Burles, Alexandra Hodson, Maha Kumaran, Rhoda MacRae, Cindy Peternelj-Taylor and Lorraine Holtslander
The number of prisoners over 55 years is increasing and many are at risk of developing dementia. This has generated new responsibilities for prisons to provide health and social…
Abstract
Purpose
The number of prisoners over 55 years is increasing and many are at risk of developing dementia. This has generated new responsibilities for prisons to provide health and social care for older persons. The purpose of this paper is to synthesize the existing research literature regarding the phenomenon of the health and social care needs of older persons living with dementia in correctional settings.
Design/methodology/approach
Using an integrative review method based on Whittemore and Knafl, the inclusion criteria for the review are: articles written in English; a focus on some form of dementia and/or older persons with discussion of dementia; to be set in a correctional context (correctional facility, prison and jail); be derived from a published peer-reviewed journal or unpublished dissertation/thesis; and be a qualitative, quantitative or mixed methods study. Based on those criteria, a search strategy was developed and executed by a health sciences librarian in the following databases: Medline, CINAHL, Embase, PsychINFO, Proquest Nursing and Allied Health and Web of Science; searches were completed up to April 2019. After data were extracted from included studies, synthesis of findings involved an iterative process where thematic analysis was facilitated by Braun and Clarke’s approach.
Findings
Eight studies met the inclusion criteria. Key findings of the eight studies include recognition of dementia as a concern for correctional populations, dementia-related screening and programming for older persons and recommendations for improved screening and care practices. Most significant is the paucity of research available on this topic. Implications for research are discussed.
Originality/value
This paper identified and synthesizes the limited existing international research on the health and social care needs of older persons with dementia living in correctional settings. Although existing research is scant, this review highlights the need for increased awareness of dementia as a concern among older persons living in correctional settings. As well, the review findings emphasize that enhanced screening and interventions, particularly tailored approaches, are imperative to support those living with dementia in correctional settings.
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Margaret Chandlee Miller, Glaucia Salgado, Nicole Nasrallah, Jennifer Bronson, Charles P. Sabatino and Jacobo Mintzer
Research about the prevalence of dementia among older adults in the incarceration system is currently lacking, and further investigation is warranted. Considering the high level…
Abstract
Purpose
Research about the prevalence of dementia among older adults in the incarceration system is currently lacking, and further investigation is warranted. Considering the high level of healthcare needs, unique behavioural issues and difficulty to rehabilitate within the system due to its punitive approach and lack of effective rehabilitation programs, further investigation is warranted to characterize and determine the number of incarcerated older adults with dementia. The purpose of this study is to estimate the prevalence of individuals with dementia in the prison system while also describing the incarceration, demographic and offence-related characteristics of this unique population.
Design/methodology/approach
South Carolina (SC) Alzheimer’s Disease and Related Dementias Registry (1992–2016) and South Carolina Department of Corrections (SCDC) data (Fiscal years 1992–2019) were cross-referenced. The prevalence of Alzheimer’s disease and related dementias (ADRD) cases in the corrections system was calculated using South Carolina Alzheimer's Disease (SC AD) SC ADRD Registry and SCDC data. Pearson’s correlation coefficients were calculated to determine strength and direction of relationships between year of incarceration and frequency of ADRD cases both prior to and after incarcerations, respectively. Significant differences by age group, race, gender and dementia type were determined using a two-tailed pooled t-test and Bonferroni approach where appropriate. Count data for types of crimes committed are also presented.
Findings
The linkage showed that there were 2,171 individuals within the SC AD Registry who have been in the corrections system, about 1% of those in the Registry. Of these individuals, 1,930 cases were diagnosed with ADRD after incarceration and 241 prior to incarceration. In 2016, 317 individuals with ADRD were incarcerated. For ages 55 and above in South Carolina, the prevalence of ADRD is 6.7% in the general, non-incarcerated population compared to 14.4% in the incarcerated population. Additional results showed that those diagnosed with ADRD between 55 and 65 years of age had a significantly lower mean age at first incarceration (34.6 years of age) than those diagnosed between 66 and 74 years of age (55.9 years of age), indicating that those incarcerated earlier in life had an earlier dementia diagnosis. Additionally, African Americans had a significantly lower mean age at first incarceration (43.4 years of age) than Whites (46.2 years of age) and females had significantly lower mean age at first incarceration (42.9 years of age) than males (45 years of age). When investigating trends, results showed a significant positive linear association between year and frequency of ADRD diagnoses (p-value < 0.05) for those with ADRD diagnosis prior to incarceration and a significant decreasing linear association (p-value < 0.0001) in the number of individuals with an ADRD diagnosis after corrections. Findings also showed that a large percentage of older adults with ADRD in prison did not commit a violence offence.
Originality/value
This study links a population-based Alzheimer’s disease registry and state-wide corrections data to estimate the prevalence of individuals with dementia in the prison system. This linkage presents an opportunity to fill in significant gaps and contribute to the body of literature on dementia among people in prison in the USA.
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Juliet Harland, Peter A. Bath, Ann Wainwright and Jeremy Seymour
The purpose of this paper is to investigate the information behaviours of patients newly diagnosed with dementia.
Abstract
Purpose
The purpose of this paper is to investigate the information behaviours of patients newly diagnosed with dementia.
Design/methodology/approach
This is a cross-sectional qualitative study, using in-depth interviews with 13 people recently diagnosed with dementia.
Findings
Reactions to a diagnosis of dementia varied and these influenced the perception of the value of information when making sense of the diagnosis. Information was avoided if participants did not feel that they could influence their situation; instead, participants relied on internal explanations to normalise their memory loss. Barriers to information seeking and use included not knowing who to speak to, perceived stigma associated with dementia and difficulty of applying generic information to own situation. Some participants valued information that confirmed their suspicions and provided explanations.
Research limitations/implications
This study was based on a small sample size (n=13), the findings may not be generalisable to all people with dementia; however, the findings may be transferable to people who have recently been diagnosed with dementia.
Practical implications
There is not a one-size-fits-all approach to information provision for people with dementia at diagnosis, information should be tailored to individuals.
Social implications
There is a need to address the feeling of powerlessness and futility that some people with dementia experience at diagnosis, as this precludes independent information seeking and use. People receiving a diagnosis may need additional support and information pertinent to their specific circumstances, separate from the information needs of their carer(s).
Originality/value
The study provides a new understanding of the information behaviours of people recently diagnosed with dementia and how these differ from those of informal carers.
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Tessa Hughes and Maria Castro Romero
The purpose of this paper is to develop an approach within the guidance of the Mental Capacity Act (2005) to meaningfully include people diagnosed with dementia (PDwD) in research…
Abstract
Purpose
The purpose of this paper is to develop an approach within the guidance of the Mental Capacity Act (2005) to meaningfully include people diagnosed with dementia (PDwD) in research endeavours.
Design/methodology/approach
As part of a broader study of self-authored narratives of care experiences, PDwD were involved in the development and implementation of a process method of consent, in which consent conversations were contextual, responsive and ongoing, and were audited with the use of field diaries.
Findings
Working within people’s relational contexts (i.e. care staff and family), eight participants with a range of dementia diagnoses and care needs made and verbally communicated research-related decisions. A desire to participate was consistently conveyed across research encounters, regardless of the extent of memory problems. Participants also demonstrated keen awareness of the links between memory problems, rights and inclusion, alongside a sense of personal identity and the capacities to clearly communicate this.
Research limitations/implications
A process model of consent encouraged formal reflection upon ethical and pragmatic complexities, and is relevant to persons diagnosed with dementia making both care- and research-related decisions. Further work is needed to include people with a broader range of communication support needs.
Originality/value
This research demonstrates substantial possibilities for eliciting and responding to the views of people with dementia diagnoses (previously excluded from research). Results open opportunities for genuine long-term research and care partnerships with PDwD for practice, service and policy development.
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Kate Ann Levin, Stephen Lithgow, Martine Miller and Jill Carson
The purpose of this paper is to examine three interpretations of post-diagnostic support (PDS) for dementia, to understand how best to support people recently diagnosed with…
Abstract
Purpose
The purpose of this paper is to examine three interpretations of post-diagnostic support (PDS) for dementia, to understand how best to support people recently diagnosed with dementia.
Design/methodology/approach
A sequential mixed-method approach was used which included analysis of the data collected by each sector, a focus group and interviews with PDS linkworkers and other staff.
Findings
All three sectors used a mix of supported self-management workshops and one-to-one PDS, however sectors varied by linkworker’s affiliation, caseload management and client group. Caseload varied greatly between sectors. Stage of disease and socioeconomic make-up of the local population were raised as factors determining the form of PDS offered. Some pillars appeared to be more easily achieved than others. There was a general agreement among all staff that “caseload” was misleading and that a measurement of workload would be preferable. Agile/mobile working was preferred by linkworkers. Even within teams there was variation in perceptions of PDS; some felt the linkworker role to be one of signposting, while others felt more involved with their client group, and for longer than 12 months.
Practical implications
Guidance at the outset of the PDS programme was sparse. The findings of this study should inform future development of the PDS model and a supporting guidance framework.
Originality/value
There is a growing interest in PDS for dementia. However, little is known about what a model of PDS should look like. This study attempts to capture the most important aspects of PDS delivery.
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Nadezhda Koberskaya and Bogdan Kobierskij
This study aims to compare two national dementia plans and analyse the approach of each state to the issue.
Abstract
Purpose
This study aims to compare two national dementia plans and analyse the approach of each state to the issue.
Design/methodology/approach
Comparative analysis, legal analysis, policy analysis
Findings
Although research is central to both plans, the practical implementation of the Russian and UK plans differs. The Russian action plan on dementia is advisory in nature and does not propose specific programmes for research funding. Two plans have different approach to the role of education and risk factors.
Research limitations/implications
Lack of information on Russian regional strategies does not allow to compare regional differences between two countries.
Originality/value
This study illustrates several weak points in the UK and Russian dementia policies, which should be addressed to tackle the dementia problem in both countries.
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Kai Victor Hansen, Christina Tølbøl Frøiland and Ingelin Testad
The Porcelain for All project was an initiative by Figgjo AS, a porcelain factory in Norway, which needed more research on different coloured porcelains. The paper aims to discuss…
Abstract
Purpose
The Porcelain for All project was an initiative by Figgjo AS, a porcelain factory in Norway, which needed more research on different coloured porcelains. The paper aims to discuss this issue.
Design/methodology/approach
The study aimed to gain new knowledge about how different décor and dinner plate colours can positively influence dementia sufferer food intake and appetite. The intervention period lasted three weeks. Four days were randomly picked during that period. Each plate was photographed before and after the resident had eaten, researchers conducted observations during mealtimes. Two CurroCus® group interviews were used to collect additional empirical data. In total, 12 dementia sufferers (five females) between 65 and 85 years were observed during dinnertime.
Findings
Plates with a white well, yellow lip and red rim seemed to be preferred regarding food intake. Three main categories were noted from the observations and group interviews: mealtime dignity, porcelain design and appetite.
Research limitations/implications
Future research could incorporate well-being in people with dementia regarding food weight, testing different meal room environments, user involvement, food presentation and should include more nursing homes and residents.
Practical implications
This study only encompasses a small sample (12 residents), all diagnosed with dementia.
Social implications
Outcomes may help to prevent undernutrition among elderly people.
Originality/value
Combined coloured porcelain, food intake and residents with dementia is scarcely investigated.
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