The Cognitive Daisy – a novel method for recognising the cognitive status of older adults in residential care: Innovative practice

The Cognitive Daisy (COG-D) is an innovative assessment system created to provide healthcare staff with an instant snapshot of the cognitive status of older adults in residential care. The COG-D comprises a flower head consisting of 15 colour coded petals depicting information about: visual-spatial perception, comprehension, communication, memory and attention. This study confirmed the practicality of the COG-D protocol for assessing cognition in a sample of 33 older adults living in residential care and endorsed the use of the COG-D as a tool for recognising the cognitive status of care home residents

People with Dementia, Contributing to Learning and Teaching in Higher Education: Innovative Practice

Patients and service users have a well-established role in teaching and learning on professional qualifying programmes such as such as social work and nursing. However, the role of people with dementia in contributing to educational initiatives at higher educational level remains under explored. Four people with dementia were recruited as Expert by Lived Experience Tutors for the Foundation Degree in Dementia Studies at a University in the United Kingdom. They met students regularly to support their learning. We were interested in researching whether and how this enhanced the ability of students to enable people to live well with dementia. However, we also discovered that the initiative gave insight into psychosocial aspects of dementia, and a new opportunity to explore personhood, co-production and social citizenship. That is the focus of this article

Sustaining people with dementia or mild cognitive impairment in employment: A systematic review of qualitative evidence

Introduction The World Health Organization estimates that 10% of the 35.6 million people worldwide with dementia are aged under 65 years. In an ageing workforce this has implications for employers, employees, and statutory and third sector services. Limited research has been conducted into this emerging global issue. Method This systematic review, employing the methodology of the Joanna Briggs Institute, aimed to identify and synthesise the best available qualitative evidence regarding the needs, experiences and perspectives of people with early onset dementia or mild cognitive impairment who were either in employment or wished to gain employment. Results Of 69 studies identified, eight met the inclusion criteria. From these, four themes emerged: disease progression and recognition; the emotional impact of change; the employer's management of the worker; and changes to the worker role. Conclusion There are health benefits to the individual with dementia or mild cognitive impairment of continuing to engage in meaningful occupation. Retirement policy changes have resulted in an ageing workforce with concurrent risk factors for dementia. A lack of understanding of reasonable adjustments and sheltered employment opportunities was evident from the literature. This review highlights the potential for occupational therapists to engage this client group in vocational rehabilitation

Young onset dementia: Public involvement in co-designing community-based support

Whilst the support requirements of people diagnosed with young onset dementia are well-documented, less is known about what needs to be in place to provide age-appropriate care. To understand priorities for service planning and commissioning and to inform the design of a future study of community-based service delivery models, we held two rounds of discussions with four groups of people affected by young onset dementia (n = 31) and interviewed memory services (n = 3) and non-profit service providers (n = 7) in two sites in England. Discussions confirmed published evidence on support requirements, but also reframed priorities for support and suggested new approaches to dementia care at the community level. This paper argues that involving people with young onset dementia in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, provides a way for co-designing services that address the challenges of accessing support for people affected by young onset dementia

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

Objectives: Personal experiences of receiving a diagnosis of young onset dementia (YOD) are often overlooked in a complex assessment process requiring substantial investigation. A thematic synthesis of published until November 2018 qualitative studies was completed to understand the lived experiences of younger people. This informed a Delphi study to learn how diagnostic processes could be improved, identify the strengths and weaknesses of current approaches, and help educate professionals concerning key issues. Method: Systematic searches of bibliographic databases were conducted involving self-reported experiences of diagnosis of YOD. Eight out of 47 papers identified were quality assessed using Walsh & Browne's criteria for methodological appraisal. Results: The review emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the clinician's use of language; and reactions to diagnosis varied from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. Conclusion: This review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors, and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults, and to promote future engagement with services

Dementia as a source of social disadvantage and exclusion

Objective To explore perceptions of the impacts of dementia on people living with the condition and those close to them and examine the relationship between dementia, disadvantage and social exclusion. Methods Semi-structured in-depth interviews were conducted with 111 participants: people with dementia (n = 19), carers (n = 28), health-care professionals (n = 21), social workers (n = 23) and service professionals (n = 20). NVivo 11 was used to code descriptions and identify impact areas. Results Participants described social, psychological, carer, material, service-based and disparity impacts associated with the experience of dementia. Some of these impacts correspond to social exclusion associated with age, but some are distinctive to dementia. Discussion It is argued that dementia generates its own forms of social disadvantage and exclusion. This is in addition to being subject to structural risk factors. The implications of the active effects of dementia as a social phenomenon should give rise to new policy and practice priorities.Peer reviewe

Critical Reflections on Methodological Challenge in Arts and Dementia Evaluation and Research

Methodological rigour, or its absence, is often a focus of concern for the emerging field of evaluation and research around arts and dementia. However, this paper suggests that critical attention should also be paid to the way in which individual perceptions, hidden assumptions and underlying social and political structures influence methodological work in the field. Such attention will be particularly important for addressing methodological challenges relating to contextual variability, ethics, value judgement, and signification identified through a literature review on this topic. Understanding how, where and when evaluators and researchers experience such challenges may help to identify fruitful approaches for future evaluation. This paper is based upon a presentation on the subject given at the First International Research Conference on the Arts and Dementia: Theory, Methodology and Evidence on 9 March 2017

'It would be easier if she’d died’: young people with parents with dementia articulating inadmissible stories

In the U.K. context where the emphasis is (quite rightly) on living well with dementia, on positivity and enabling approaches, it can be difficult for researchers to investigate and report negative experiences. Failing to re-present perceptions and experiences as they are lived, however, does a serious disservice to the research endeavor and can prevent policy and service development and positive change. In this article, we present some stories told by participants in an Alzheimer’s Society (United Kingdom) Funded project uniquely investigating the perceptions and experiences of children and young people who have a parent with dementia. Sometimes the stories were not easy to hear, especially when they challenged dominant master narratives around dementia. We discuss our view that when the young people we spoke with told us how things were for them, we were ethically bound to respect and disseminate their accounts