Dementia

The purpose of this study is to describe and discuss the art experience of persons with dementia taking part in guided museum tours at a Norwegian art museum. The analysis is based on semi-structured open-ended interviews with participants and researcher field notes. The results demonstrate the capacity and willingness of persons with dementia to reach out and connect on a personal level with the artworks. We identified four experiential dimensions: (1) a new way of seeing, (2) being lifted out of everyday life, (3) activating emotional and bodily responses and (4) connecting art and life. Our findings draw attention to the existential dimensions of the art experience and show that dementia-friendly programmes can offer individuals with dementia a way to stay connected both to themselves and to the wider community through active participation in a cultural discourse. This is the first research study conducted in this emerging field in a Norwegian context.

Sleep is important for healthy ageing. Data are limited concerning the sleep and health of New Zealand families affected by cognitive impairment or dementia. This postal survey asked about the sleep of 526 family carers and explored predictors of, and outcomes associated with poorer sleep. Linear and binominal logistic regression were used to identify independent predictors and outcomes of carers’ sleep status. Using the Insomnia Severity Index, 23.5% of carers scored in the moderate–severe range and 43.0% in the mild range for sleep disturbance. More than a quarter indicated that their family member had difficulties falling asleep, getting up during the night, or waking too early. Over half of care recipients were considered to sleep too much during the day. Independent predictors for carers’ reporting greater sleep disturbance included being female, caregiving at night, poorer self-rated health, and the care recipient having more disturbed sleep. Moderate–severe sleep disturbance was independently associated with poorer self-rated health and living standards, use of sleeping medications, as well as considering transitioning their family member into formal care within the year. These findings have implications for the wellbeing and trajectory of family carers as well as for health and aged care services.

Primary progressive aphasia is a major clinical presentation of frontotemporal lobar degeneration and is a young-onset disorder characterized by deteriorating language skills. There is currently no cure for primary progressive aphasia, nor is it possible to slow the course of the underlying progressive brain degeneration. Hence the chief goal of treatment is palliative. Although the inability to employ language at one’s previous level represents a significant functional impairment for those affected, there is a dearth of information about how to make meaningful improvements to the quality of life of people in the early stages of primary progressive aphasia. I have a clinical diagnosis, supported by imaging, of the nonfluent/agrammatic variant of primary progressive aphasia and am under the care of a multidisciplinary medical team. This report is based on my ongoing experience and describes the development and implementation of an evolving set of targeted strategies and adaptations designed to enhance the quality of life of a person in the early stages of this disorder.

This study examined public stigma associated with Alzheimer’s disease (AD) among Korean Americans and identified factors affecting their public stigma. Data used in the study were collected using a cross-sectional survey with 268 Korean Americans. Guided by attribution theory, different domains of public stigma were assessed: pity, antipathy, and social distance. Hierarchical regression analyses were conducted to examine the effects of sociodemographic characteristics, exposure to AD, social networking, and AD knowledge on each stigma domain. The influence of emotional attributions (pity and antipathy) on behavioral attributions (social distance) in the stigma process suggested in attribution theory was also examined. Results show that pity is most prevalent followed by social distance and antipathy. Being more proficient in English, knowing fewer relatives/friends with AD, and knowing less about AD risk factors are associated with having more pity stigma. Being less socially engaged and knowing less about AD risk factors are related to having more antipathy stigma. Being younger and more proficient in English and having stronger antipathy stigma are associated with having more social distance stigma. Findings reveal multifaceted nature of public stigma associated with AD in Korean Americans and suggest that we need to work on both positive and negative sides of public stigma for stigma change. Findings of different factors associated with each public stigma domain can be considered when trying to foster and/or reduce certain stigmatic beliefs and behaviors associated with AD.

The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver’s health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers’ mood and quality of life in a randomized controlled trial. We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before–after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers’ quality of life, depressive symptoms, and care burden.

This paper explores some of the ethical considerations of working collaboratively with people with dementia within research based upon the experiences, challenges and learning from three doctoral research studies. Focus is on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics and ethics of care to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to share, based upon these three studies, ways of managing and working through some of the ethical consideration to support researchers in their decisions in planning and conducting research with people with dementia as active collaborators.

Interest in the potential benefits of poetry writing in dementia care has been increasing. Various practical projects, as well as research articles, have highlighted how poetry can acknowledge the words of persons with dementia, and increase well-being. In this article, the authors present a poetry writing project in dementia care in Norway, and argue for how poetry as a genre involves lyrical as well as ethical aspects. The aim of this article is to show how linguistic and ethical sensibility can illuminate the poetic possibilities of the everyday language of persons with dementia. Through a close reading of selected poems from the poetry writing project, the authors show how poetry writing can give an increased understanding of the resources in the everyday language of persons living with dementia. Poetry can open up alternative forms of expression and agency, and thereby support the narrative citizenship of persons with dementia.

Dementia is one of the prominent conditions for which an aging population has been seeking end-of-life solutions such as assisted dying. Individuals with dementia, however, are often unable to meet the eligibility criteria of being mentally competent and are thus discriminated against in relation to assisted dying laws. Provided that the assisted death directive is being made in sound mind, it is still of concern whether these advance directives can be appropriately framed and safeguarded to protect the wish of these vulnerable individuals while preventing harm. Therefore, to establish consensus views of experts on primary issues of, and concerns about, assisted dying for individuals with dementia as well as exploring tentative conceptual framework to safeguard practice and application, a three-round Delphi study was conducted. A core group of 12 experts from five countries was recruited comprising expertise in domains relevant to assisted dying and dementia. A semantic–thematic approach was applied to analyze the 119 generated statements. Evaluation of these research statements resulted in full consensus of 84 (70%) items. Our primary findings highlight seven core domains: applicability of assisted dying for dementia; ethical, practical, and pathological issues regarding the application of assisted dying; and ethical, legal, and professional recommendations for the ways forward. Despite the issues surrounding the provision of assisted death for individuals with dementia, our findings lead us to cautiously conclude that devising “adequate” safeguards is achievable. The result of this research may benefit future research and practice.

At the point of diagnosis of dementia many people will be driving and go on to experience the significant life transition from driver to non-driver. Driving plays an important role in society enhancing independence, quality of life and general health and well-being. Hence cessation from driving can be a very difficult life transition to make. The aim of this integrative review was to summarise what is known about the impact and experience for people with dementia and their carers in the ‘post-cessation’ phase of retiring from driving. Thematic analysis utilised themes identified in previous life transition research focusing on driving cessation and these included processes, influences, emotions, roles and programmes. Analysis revealed a lack of formal processes to follow in surrendering one’s licence and that the medical professions and multi-disciplinary teams should take more responsibility for the legal processes of driving cessation and supporting individuals at the point of and following this disclosure. People with dementia and their carers experience a significant impact upon their life roles and considerable emotional and psychological consequences. The review also suggested that there are a variety of influences affecting the life transition period from driver to non-driver such as family support and access to alternative forms of transport and that there is a need for development for interventions/programmes to support individuals with dementia post-driving cessation.

The use of touchscreen tablets, such as the iPad, offers potential to support the person with dementia staying in a care setting, ranging from a long-term care home to an adult day programme. Although electronic devices are used among people with dementia, a comprehensive review of studies focusing on their impact and how they may be used effectively in care settings is lacking. We conducted a scoping review to summarize existing knowledge about the impact of touchscreen tablets in supporting social connections and reducing responsive behaviours of people with dementia in care settings. Our research team consists of patient partners and family partners, physicians, nurses, a medical student and an academic professor. A total of 17 articles were included in the review. Our analysis identified three ways in which touchscreen tablets support dementia care: (1) increased the person’s engagement, (2) decreased responsive behaviours and (3) positive effect on enjoyment/quality of life for people with dementia. Lessons learned and barriers to the use of touchscreen tablets in the care of people with dementia are described. Overall, only a few studies delineated strategies that helped to overcome barriers to technology adoption in care settings. Knowledge translation studies are needed to identify effective processes and practical tips to overcome barriers and realize the potential of assistive technology in dementia care.

A hospital–university collaboration has created an innovative learning Academy for persons living with dementia. Authors propose essential foundations for creating a different culture of dementia care: a home-like, judgement free place; a relational space focused on artistic expression and discovery; and, the marriage of learning with a deep respect for difference and growth. An array of challenges and insights highlight the commitments required to create and sustain real change. Partnerships with community organizations and schools merged relational philosophy-based research, teaching–learning, and art to generate new patterns of innovative practices. The commitment of the Academy is to relational arts-based inquiry focused on relationships, life enrichment, and engagement in a space where everyone thrives.

Because of challenges involved in recruitment, little research has focused on care needs of minority ethnic groups. This article reports on a study that recruited 186 British south Asian carers of people with dementia. Four obstacles were faced: language barriers, confusion over research, feelings of shame/stigma, and mistrust. Researchers drew on various methods: enlisting multilingual researchers; activating contacts in minority ethnic communities; engaging with community groups; emphasising potential for enhancing support services; and tailoring research instruments to minority ethnic issues. Tips are offered to other researchers recruiting minority ethnic participants into studies.

Music-based therapies have been widely evaluated for individuals with dementia. Music Mirrors (MM) is a new music-based reminiscence tool that looks to improve person-centred care, encourage conversation and stimulate reminiscence. Since MM is designed for persons with mild dementia, this project looked to determine the feasibility, acceptability and efficacy of the tool with three individuals with moderate to severe dementia. Over 6 weeks, 12 sessions were conducted, assessing for mood and behavioural changes during and after each session. Despite limitations to the project, overall results suggest that MM can be beneficial to people with moderate to severe dementia.

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

Dementia research is critical to improve dementia care; however, participation in this research remains limited, and recruitment is challenging. During an international panel at the 2018 Alzheimer Disease International Conference in Chicago, presentations were given to raise the profile of dementia research and share the patient experience of research participation. We observed notable shifts in perspectives on research participation from 39 participants who completed a survey before and after the presentations. These findings set the stage for future studies exploring the strength of independent motivations for research participation as well as improving recruitment efforts through education and peer support.