Touchscreen interventions and the wellbeing of people with dementia and caregivers: a systematic review

Background: Dementia can have significant detrimental impacts on the wellbeing of those with the disease and their carers. A range of computer-based interventions, including touchscreen-based interventions have been researched for use with this population in the hope that they might improve psychological wellbeing. This article reviews touchscreen-based interventions designed to be used by people with dementia, with a specific focus in assessing their impact on wellbeing. Method: The data bases, PsycInfo, ASSIA, Medline, CINAHL and Cochrane were searched for touchscreen-based interventions designed to be used by people with dementia with reported psychological wellbeing outcomes. Methodological quality was assessed using Pluye et al.’s (2011) Mixed Methods Appraisal Tool (MMAT) checklist. Results: Sixteen papers were eligible. They covered fourteen methodologically diverse interventions. Interventions were reported to be beneficial in relation to mental health, social interaction and sense of mastery. Touchscreen interventions also reportedly benefit informal carers in relation to their perceived burden and the quality of their relationships with the people they care for. Key aspects included the user interface, provision of support, learning style, tailored content, appropriate challenge, ergonomics and users’ dementia progression. Conclusions: Whilst much of the existing research is relatively small-scale, the findings tentatively suggest that touchscreen based interventions can improve the psychological wellbeing of people with dementia, and possibilities for more rigorous future research are suggested

Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers’ Positive Experiences

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD’s positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others’ responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD’s positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers’ positive caring experiences and resources within healthcare and supportive settings

The arts and dementia: Emerging directions for theory, research and practice

This is a Special Issue of the Journal Dementia that I was responsible for co-editing. This special issue includes papers that are empirical, theoretical and review-based, exploring the visual arts, music, theatre and the spoken word. A variety of cultural contexts and settings are covered (including a UK hospital, a US long-term care facility, closed wards in a Dutch nursing home and a German Museum). A systematic review by Curtis et al. sets the tone for this collection by providing high-level evidence about the effectiveness of a range of arts for health activities on the health, well-being and quality of life for older people in care homes. Music in dementia care has predominantly been considered in community settings and amongst groups of people with mild to moderate dementia. A unique international overview of the most current research into the impacts of music in healthy ageing for people living with strokes and also with a dementia is given by Särkämö, and Daykin et al.’s original study contributes to understanding about how live, participatory music sessions can ameliorate hospital-based care for those with dementia. The importance of confronting the theoretical basis of visual art programmes is tackled by Windle et al., and the study by Schall et al. contributes to the growing evidence base concerning the value of museum-based projects for people with a dementia. There is also a more personal, reflective account by Harrison exploring the transformative effects on an artists’ practice of working with people with a dementia. In a similarly reflective vein, Basting outlines the development of ‘The Penelope Project’ and explores how a creative, community building approach can engage people living with dementias as equals in culture-making projects. Using one of Bastings’ innovations, Swinnen and de Medeiros, in their study, demonstrate the ways in which spoken word projects can support the linguistic agency of people with a dementia in long-term care settings

Effects of a museum-based social-prescription intervention on quantitative measures of psychological wellbeing in older adults

Aims: To assess psychological wellbeing in a novel social prescription intervention for older adults called Museums on Prescription, and to explore the extent of change over time in six self-rated emotions (‘absorbed, ‘active’, ‘cheerful’, ‘encouraged’, ‘enlightened’ and ‘inspired’). Methods: Participants (n=115) aged 65-94 were referred to museum-based programmes comprising 10, weekly sessions, by healthcare and third sector organisations using inclusion criteria (e.g. socially isolated; able to give informed consent; not in employment; not regularly attending social or cultural activities) and exclusion criteria (e.g. unable to travel to the museum; unable to function in a group situation; unlikely to be able to attend all sessions; unable to take part in interviews and complete questionnaires). In a within-participants design, the Museum Wellbeing Measure for Older Adults (MWM-OA) was administered pre-post session at start- mid- and end-programme. Twelve programmes, facilitated by museum staff and volunteers, were conducted in seven museums in central London and across Kent. In addition to the quantitative measures, participants, carers where present, museum staff and researchers kept weekly diaries following guideline questions, and took part in end programme in-depth interviews. Results: Multivariate analyses of variance showed significant participant improvements in all six MWM-OA emotions, pre-post session at start- mid- and end-programme. Two emotions, ‘absorbed’ and ‘enlightened’, increased pre-post session disproportionately to the others; ‘cheerful’ attained the highest pre-post session scores whereas ‘active’ was consistently lowest. Conclusions: Museums can be instrumental in offering museum-based programmes for older adults to improve psychological wellbeing over time. Participants in the study experienced a sense of privilege, valued the opportunity to liaise with curators, visit parts of the museum closed to the public, and handle objects normally behind glass. Participants appreciated opportunities afforded by creative and co-productive activities to acquire learning and skills, and get to know new people in a different context

Understanding the experience of group singing for couples where one partner has a diagnosis of dementia

Purpose of study: There is a continuing interest around the use of group singing in dementia care. Although studies generally indicate positive outcomes, limited research has been carried out from a relational perspective, which places the couple relationship in a central position. This study aimed to better understand how group singing benefits people with dementia and their partners. Design and Methods: Interview data from 17 couples (N = 34) with one member having dementia, who participated in a range of different types of singing groups, were analysed using grounded theory methodology. Results: Five key areas were identified, resulting in the development of the group singing model in dementia for couple dyads. Group singing was experienced as being both joyful and accessible. The accessibility of singing, combined with effective facilitation, created an environment for active participation and enjoyment. The group effect mediated further benefits for the person with dementia and for the caregiver which, when combined, increased benefits for the couple through participation in new experiences. Implications: An opportunity for couples to share in-the-moment creative expression and the positive affect of artistic creation circumventing cognitive impairment is likely to contribute positively to the experience of the relationship. A more refined understanding of shared creative processes in relationship-centred models of care could inform dementia support services. Future research would benefit from longitudinally exploring the links between creativity in couples and relationship resilience

Subjective wellbeing in people living with dementia: Exploring processes of multiple object handling sessions in a museum setting

Dementia care guidance highlights the importance of supporting people living with dementia to access engaging and meaningful activities to promote their quality of life. There is a growing evidence base for the efficacy of heritage settings and arts-based interventions to provide social prescribing opportunities to help support wellbeing in this population. This study extended previous research and explored the potential processes underlying this effect in multiple small group object handling sessions in a museum setting. A mixed-methods design was used comprising a pre-post measure of subjective wellbeing and an inductive thematic analysis to explore in-the-moment session content across multiple sessions. Four people with dementia participated in three, one-hour group object handling sessions led by two facilitators. Pre-post wellbeing scores tentatively corroborated subjective wellbeing scores by showing improved wellbeing after each session though this was largely not significant due to low power resulting from the small sample size. Qualitative findings identified four key themes: facilitating, interest in exploring objects, active participation, and group collaboration. Tentative interpretations were made around the dynamic interaction of themes and subthemes. Findings offer ways to optimise object handling sessions for people with dementia by providing in-depth information about the processes involved across multiple object handling sessions facilitated my museum/heritage professionals in a museum setting. This has useful implications for community-based activities as part of dementia care planning and public health programming. Limitations and implications for future research are discussed. This is the first study we are aware of that has taken an in-depth look at multiple museum-based group object handling sessions for people living with dementia. The study contributes to a deeper understanding and elucidates the processes that enhance wellbeing for people living with dementia who participate in such sessions. It also helps to develop further theoretical understanding about why these types of activities are helpful in community-based dementia care

Singing and music making: physiological responses across early to later stages of dementia

Background: Music based interventions have been found to improve wellbeing for people with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. Methods: This multiple-case study design explored physiological responses (heart rate-HR, electrodermal activity-EDA, movement, and skin temperature-ST) of nine people with mild-to-moderate using simulation modelling analysis. Results: In study 1, the singing group showed an increase in EDA (p < 0.01 for 8/9 participants) and HR (p < 0.01 for 5/9 participants) as the session began. HR (p < 0.0001 for 5/9 participants) and ST (p < 0.0001 for 6/9 participants) increased during faster tempos. EDA (p < 0.01 all), movement (p < 0.01 for 8/9 participants) and engagement were higher during singing compared to a baseline control. In study 2 EDA (p < 0.0001 for 14/18 data points [3 music conditions across 6 participants]) and ST (p < 0.001 for 10/18 data points) increased and in contrast to the responses during singing, HR decreased as the sessions began (p < 0.002 for 9/18 data points). EDA was higher during slower music (p < 0.0001 for 13/18 data points), however this was less consistent in more interactive sessions than the control. There were no consistent changes in HR and movement responses during different music genre. Conclusions: Physiological measures provide valuable information about the experiences of people with dementia participating in musical activities, particularly for those with verbal communication difficulties. Future research should consider using physiological measures. video-analysis and observational measures to explore further how engagement in specific activities, wellbeing and physiology interact

Situating support for people living with rarer forms of dementia

BACKGROUND: Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery. METHODS: Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps. RESULTS: Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated. CONCLUSIONS: The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions

Talking Lines: A Research Protocol Integrating Verbal and Visual Narratives to Understand the Experiences of People Affected by Rarer Forms of Dementia

People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms—to diagnosis—to accessing support—to the present, using visual and verbal methodologies