Ticket to Talk: Supporting Conversation between Young People and People with Dementia through Digital Media

We explore the role of digital media in supporting intergenerational interactions between people with dementia and young people. Though meaningful social interaction is integral to quality of life in dementia, initiating conversation with a person with dementia can be challenging, especially for younger people who may lack knowledge of someone’s life history. This can be further compounded without a nuanced understanding of the nature of dementia, along with an unfamiliarity in leading and maintaining conversation. We designed a mobile application - Ticket to Talk - to support intergenerational interactions by encouraging young people to collect media relevant to individuals with dementia to use in conversations with people with dementia. We evaluated Ticket to Talk through trials with two families, a care home, and groups of older people. We highlight difficulties in using technologies such as this as a conversational tool, the value of digital media in supporting intergenerational interactions, and the potential to positively shape people with dementia’s agency in social settings

Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia

Across the world, an early and timely diagnosis of dementia is seen to be a policy and practice imperative and a necessary step in order to live well with the condition. However, limited understanding exists regarding the personal and relational meanings attributed to the diagnostic experience. Drawn from the findings of a larger multi-site study conducted in four areas of England, this article presents a subset of the data where five participants and their carers and two people living alone initially presented themselves at a memory clinic for diagnostic testing, with this presentation eventually resulting in a confirmed, and shared, diagnosis of dementia. All 12 participants were interviewed at two time points in the study: at the time of first presentation to the memory clinic and shortly after the diagnosis had been shared with them. Informed by the grounded theory method, constant comparative analysis was applied to the data and this process resulted in a four-phase sequential model of diagnostic transition: (1) becoming self-aware → seeking outside help; (2) being referred → receiving a clinic appointment; (3) undergoing tests → being told what's wrong; and (4) adjusting to the diagnosis → negotiating everyday expectations. Running through each phase was the core category of ‘living with uncertainty’ which summarised the entire diagnostic journey for all study participants. Findings suggest a need for better awareness and information for people living with dementia at all phases and time points in the condition, which may be fostered by embedding these in early clinical encounters

Measures of resting state EEG rhythms for clinical trials in alzheimer's disease patients : recommendations of an expert panel

Background and Aim: Eyes-closed resting state electroencephalographic (rsEEG) rhythms reflect neurophysiological oscillatory mechanisms of synchronization/desynchronization of activity within neural populations of ascending reticular activating brain systems and thalamus-cortical circuits involved in quite vigilance regulation. Currently, they are not considered as biomarkers of Alzheimer’s disease (AD) in the amyloid, tau and neurodegeneration (ATN) Framework of Alzheimer’s Association and National Institute of Aging (AA-NIA). The Electrophysiology Professional Interest Area (EPIA) of AA and Global Brain Consortium endorsed this article written by a multidisciplinary Expert Panel to provide recommendations on candidate rsEEG measures for AD clinical trials. Method: The Panel revised the field literature and reached consensus about the rsEEG measures consistently associated with clinical phenotypes and neuroimaging markers of AD in previous international multicentric clinical trials. Most consistent findings: AD patients with mild cognitive impairment and dementia displayed reduced peak frequency, power, and paired-electrode “interrelatedness” in posterior alpha (8-12 Hz) rhythms and topographically widespread increases in delta (< 4 Hz) and theta (4-8 Hz) rhythms. Recommendations: (i) Careful multi-center standardization of instructions to patients, rsEEG recordings, and selection of artifact-free rsEEG periods; (ii) extraction of rsEEG power density and paired-electrode “interrelatedness” (e.g., directed transfer function, phase lag index, linear lagged connectivity, etc.) rsEEG measures computed at delta, theta, and alpha frequency bands by validated open-access software platforms for replicability; (iii) valid use of those measures in stratification of AD patients and monitoring of disease progression and intervention; and iv) international initiatives to cross-validate rsEEG measures (including nonlinear) for disease monitoring and intervention

Finding a way: long-term care homes to support dementia

An ageing demographic has increased the number of people with dementia. Although dementia is commonly associated with memory loss, other early symptoms include difficulty with wayfinding. Dementia alters visuo-spatial perception and the processes used to interpret the physical environment. The role of the design of the physical environment for people with dementia has gained increased recognition. Despite this, design for dementia is often overlooked, focusing on issues relating to physical impairment. This paper presents the results of a PhD study and aims to examine the role of the design of the physical environment in supporting wayfinding for people with dementia living in long-term care settings in Northern Ireland. Mixed methods combined the observation of wayfinding walks and conversational style interviews to elicit perspectives and experiences of residents with dementia. The findings aim to promote well-being for those with dementia living in long-term care settings

The Impact of Dementia on Women Internationally: an Integrative Review

Women are disproportionately affected by dementia, both in terms of developing dementia and becoming caregivers. We conducted an integrative review of English language literature of the issues affecting women in relation to dementia from an international perspective. The majority of relevant studies were conducted in high income countries, and none were from low-income countries. The effects of caregiving on health, wellbeing and finances are greater for women; issues facing women, particularly in low and middle-income countries need to be better understood. Research should focus on building resilience to help people adjust and cope long term

Diet, exercise and dementia: The potential impact of a Mediterranean diet pattern and physical activity on cognitive health in a UK population

Diet and physical activity play key roles in maintaining health and preventing or delaying disease. The global prevalence of dementia, an umbrella term describing a set of symptoms which affect cognitive function, is set to rise dramatically by 2050, with current drug treatments inadequate. Diet and physical activity are modifiable factors in dementia, influencing both disease risk and pathophysiology. It has been known since the 1950s that a Mediterranean diet has positive health benefits. Over the past 25 years, a causal link has been shown between consumption of a Mediterranean diet and decreased risk of cardiovascular disease, particularly in Mediterranean countries. There have also been indications that a Mediterranean diet and increased physical activity can improve cognitive health and delay the onset of dementia. However, causative demonstrations of these effects, as well as the feasibility of implementing such lifestyle changes in a non‐Mediterranean population, are lacking. The new MedEx‐UK programme will attempt to address both these points

Evaluation of a dementia awareness programme in UK schools: a qualitative study

Objectives ‘Dementia Friends’ is a programme used to raise awareness of dementia, developed by the Alzheimer's Society, which has been delivered across the UK to diverse populations, including adolescents. However, there is little evidence available with regards to adolescents' perceptions of the programme and its impact. This study aims to explore this in a group of adolescents from the south of England. Study design Focus group discussions. Methods Thirty adolescents aged between 11 and 16 years were recruited from two schools in East Sussex, England. All had participated in a Dementia Friends session in the past month. Focus group discussions were transcribed, coded and themes were created using inductive thematic analysis. Results Four themes were identified: (1) perceptions and experiences of dementia, (2) outcomes and learning from Dementia Friends session, (3) reactions to the Dementia Friends session and (4) identified future learning needs. Conclusions Adolescents had generally positive opinions about Dementia Friends, particularly the interactive nature of the session. Whilst they felt participating in Dementia Friends improved their attitudes and knowledge, they were often left wanting to learn more. Future research needs to empirically evaluate the extent to which Dementia Friends may improve attitudes and knowledge of dementia

How do we enhance undergraduate healthcare education in dementia? A review of the role of innovative approaches and development of the Time for Dementia Programme

Objectives: Traditional healthcare education, delivered through a series of time-limited clinical placements, often fails to deliver an understanding of the experiences of those with long-term conditions, a growing issue for healthcare systems. Responses include longitudinal integrated clerkships and senior mentor programmes allowing students' longer placements, continuity of contact and opportunities to learn about chronic illness and patient experience. We review their development and delivery in dementia and present the Time for Dementia (TFD) Programme, a novel 2-year interdisciplinary educational programme. Design: The study design involves a scoping review of enhanced placements in dementia for healthcare professionals in training including longitudinal integrated clerkships and senior mentor programmes and a case study of the development of TFD and its evaluation. Results: Eight enhanced programmes in dementia were identified and seven in the USA. None were compulsory and all lasted 12 months. All reported positive impact from case study designs but data quality was weak. Building on these, TFD was developed in partnership between the Alzheimer's Society, universities and NHS and made a core part of the curriculum for medical, nursing and paramedic students. Students visit a person with dementia and their family in pairs for 2 h every 3 months for 2 years. They follow a semi-structured interaction guide focusing on experiences of illness and services and complete reflective appraisals. Conclusions: We need interprofessional undergraduate healthcare education that enables future healthcare professionals to be able to understand and manage the people with the long-term conditions who current systems often fail. TFD is designed to help address this need