Experiences of a communication-skills course for care partners of people living with dementia, empowered conversations: A qualitative framework analysis.

OBJECTIVES: Our aims were to examine whether an experiential course for care partners of people living with dementia, Empowered Conversations (EC), was acceptable to participants and to explore participants' perceptions of the impact of the course upon their communicative interactions. EC is based on an integrative model derived from psychological and linguistic theory and empirical evidence. EC is based on mentalisation theory, perceptual control theory and linguistic theory (The Communicative Impact Model). METHODS: Qualitative data were collected via 28 semistructured interviews. Framework analysis was used to analyse data. RESULTS: Three superordinate themes, 'improved communication', 'improved well-being' and 'support through others' were identified. Twenty-seven out of the 28 participants described feeling that they were able to better connect with the person living with dementia that they were supporting through attending EC. CONCLUSIONS: The findings indicated that EC was acceptable and beneficial to care partners. Care partners developed a range of strategies and understandings that enabled them to communicate better with the person they were supporting, enhanced well-being and relationships, as well as developing social networks. This is the first qualitative study to examine a psychosocial intervention for care partners of people living with dementia using a non-CBT framework and indicates that perceived control could influence how care partners respond to stress and difficulties.

Use and uptake of technology by people with dementia and their supporters during the COVID-19 pandemic.

OBJECTIVE: This rapid review aims to identify the types of technologies used by people with dementia and their supporters during the COVID-19 pandemic, and the issues which influenced technology adoption within their usual care routines. METHODS: PubMed, PsychInfo, Scopus, and Cochrane COVID reviews were searched to identify peer-review studies published since 2020. A total of 18 studies were included and synthesised thematically. RESULTS: Of these, most were conducted in the community (n = 15) with people with dementia only (n = 11) and involved qualitative methods (n = 11). The majority (n = 12) focused on digital off-the-shelf and low-cost solutions, such as free video conferencing platforms, to access care, socialise or take part in interventions. Whilst often well-accepted and associated with positive outcomes (such as improved social connectedness), lack of digital literacy or support to use technologies, limited access to appropriate technology, individuals' physical, cognitive, or sensory difficulties, were highlighted and likely to threaten the adoption of these solutions. The quality of the evidence was mixed, neither very robust nor easily generalisable which may be attributed to the challenges of conducting research during the pandemic or the need to rapidly adapt to a new reality. CONCLUSION: While COVID-19 has fast-tracked the adoption of technology, its use is likely to continue beyond the pandemic. We need to ensure this technology can leverage dementia support and care and that people with dementia are enabled and empowered to use it.

Delivering person-centred dementia care: Perceptions of radiography practitioners within diagnostic imaging and radiotherapy departments.

INTRODUCTION: Despite abundant literature on the diagnosis of dementia, limited research has explored the lived experiences of radiography practitioners when providing care to people living with dementia in the department. OBJECTIVES: This qualitative study explored the perceptions and compatibility of current professional guidance by both diagnostic imaging and radiotherapeutic radiography practitioners as well as the key stakeholders involved with developing the Society and College of Radiographers clinical practice guidelines for caring for people with dementia. METHODS: This was a two-phase multi-method study. Fifteen diagnostic imaging and two therapeutic radiography practitioners from across the UK participated with online focus group discussions. Four key stakeholders involved with the development of the Society and College of Radiographers guidelines took part with individual semi-structured interviews. Data analysis included narrative and thematic analysis. RESULTS: Participants from both phases identified enablers and barriers to providing person-centred dementia care. Three superordinate themes were identified linked to (1) Working with care partners, (2) Departmental environmental design, and (3) Communication and interprofessional infrastructure. DISCUSSION: Many radiography practitioners still feel unprepared when caring for people living with dementia despite the clinical practice guidelines. Care partners were identified as having the potential to help alleviate some of the challenges radiographers faced. Participants were also aware of the impact of the departmental environment and recognised that poor way finding designs could lead to frustration. Radiography practitioners were not always aware that a patient was living with dementia prior to their attendance in the department making it difficult for practitioners to make appropriate accommodations such as additional time at appointments or the departmental environment. Our findings suggest there is a need for profession specific education and training for radiography practitioners to support the provision of person-centred dementia care. There is also a need to support the design of dementia friendly diagnostic imaging and radiotherapy departments.

Healthcare professionals' perceived challenges and solutions when providing rehabilitation to persons living with dementia-A scoping review.

AIM: This review aimed to map studies related to healthcare professionals' perceptions and attitudes towards the rehabilitation for persons living with dementia and extract what they perceive are the barriers and solutions. BACKGROUND: Rehabilitation can improve the quality of life and integration of persons living with dementia into society. However, there are several barriers to accessing rehabilitation services. Healthcare professionals are a source of information to understand the challenges and provide solutions to improve these services. DESIGN: Arksey and O' Malley (International Journal of Social Research Methodology, 8, 2005 and 19) five-step framework for scoping reviews and the PRISMA-ScR checklist was used. The PAGER (Patterns, Advances, Gaps, Evidence for practice and Research recommendations) framework was used to identify research and practice recommendations. METHOD: Seven databases including Medline Complete, Academic Search Ultimate, Ageline, CINAHL, PsycInfo, Pubmed and Google Scholar were searched. The healthcare professionals' perceived challenges and solutions were categorised using Braun & Clarke (Qualitative Research in Psychology, 3, 2006 and 77) thematic analysis. RESULTS: Fifteen articles were selected for review. The challenges and solutions were organised according to their association with three stakeholders; the persons living with dementia/informal caregivers, healthcare professionals and the organisation providing the service. Nine of the studies focused on persons living with dementia following a fall or a hip fracture. Most of the studies focused on the perceptions of allied healthcare professionals, with nurses working in rehabilitation settings being underrepresented. CONCLUSION: Healthcare professionals have to consider the complexity of rehabilitating persons living with dementia irrespective of the rehabilitation speciality. Moreover, more studies are needed that focus on the views of rehabilitation nurses. RELEVANCE TO CLINICAL PRACTICE: This review provides further evidence of the healthcare professionals' misconceptions about the rehabilitation potential of persons living with dementia. There is a need to educate healthcare professionals about the societal, attitudinal and environmental barriers faced by persons living with dementia and their caregivers. PATIENT CONTRIBUTION: No Patient or Public Contribution-scoping review.

'I want every minute to be worthwhile now': The views and experiences of people living with dementia and their care partners about returning to in-person group meetings after COVID-19 lockdown restrictions.

COVID-19 and the resulting limitations on freedom of movement has been difficult for many, including individuals living with dementia and those who provide support and care. In the summer of 2021, England's national lockdown measures eased, and regulations were amended to allow indoor social gatherings. With this enabling a return to in-person meetings, this study explored the experiences of people living with dementia and current and former care partners who had previously attended groups at Salford Institute for Dementia (UK). Two phases of research were conducted. In the first phase, during the summer of 2020, telephone interviews were utilised to ask participants (n = 13) about their views of re-engagement and how the in-person groups might be best reintroduced. Phase two began in the summer of 2021, where mood questionnaires (n = 10) were administered and observations conducted to explore how participants experienced the return to in-person meetings. Thematic analysis resulted in the construction of three overarching themes: planning for and the reality of transitioning; safety versus autonomy; and tensions and complexities of life in the 'new normal'. Despite initial concerns about their reintegration into the community, participants all enjoyed resuming in-person meetings. An inclusive and consultative approach to re-engagement allowed all participants to feel valued, safe, and informed about their return to campus. However, individuals living with dementia and care partners experienced the transition to re-engagement in different ways and their perceptions shifted over time. We therefore highlight the complexities of responding to different perceptions of risk and safety, while also promoting engagement and inclusivity after a period of social isolation. In this paper, we consider implications for the re-integration of individuals with dementia and their care partners into in-person social groups and propose further avenues for research.

Perspectives of people living with dementia and their care partners about the impact on social health when participating in a co-designed Dementia café.

Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia and their care partners in the North-West of England. Semi-structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well-being and social health for all participants. Community-based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise.

Music-making in the community with people living with dementia and care-partners - 'I'm leaving feeling on top of the world'.

Evidence exists relating to music-based initiatives and positive health outcomes for people living with dementia who can access them. Yet, knowledge about the impact of 'music-making' on the well-being of community-dwelling people with dementia is limited. Much of the existing evidence about the benefits of music is focused on care home settings where initiatives can be readily applied as part of a weekly schedule of activities. Therefore, this initiative aimed to provide opportunities to participate in music-making, to increase social interaction and ultimately well-being in a community environment. Ten music-making session were scheduled for community-dwelling people living with dementia and care-partners, once a month between September 2019 and March 2020. Three sessions did not take place due to Covid19. Eighteen participants consented to take part including seven people living with dementia, five care-partners and six former care-partners. Baseline semi-structured interviews explored the lived experience of music and expectations of the upcoming music-making cafes. Self-report questionnaires captured 'in the moment' experiences of each music-making cafe. Follow-up semi-structured interviews explored the impact of music-making on participants' self-reported well-being. Interviews were transcribed verbatim and analysed thematically. The findings demonstrate that participating in the music-making café benefitted the self-reported well-being of participants in three ways: first, a sense of camaraderie that enabled the facilitation of connections with others; second, creating opportunities to 'level the playing field' by always assuming a person's strengths and abilities; and third, group participation in music-making meets a need for meaningful musical experiences. We conclude that participating in music-making is a powerful medium to promote well-being for community-dwelling people living with dementia and care-partners.

A Scoping Review of Care Trajectories across Multiple Settings for Persons with Dementia.

Multiple transitions across care settings can be disruptive for older adults with dementia and their care partners, and can lead to fragmented care with adverse outcomes. This scoping review was conducted to identify and classify care trajectories across multiple settings for people with dementia, and to understand the prevalence of multiple transitions and associated factors at the individual and organizational levels. Searches of three databases, limited to peer-reviewed studies published between 2007 and 2017, provided 33 articles for inclusion. We identified 26 distinct care trajectories. Common trajectories involved hospital readmission or discharge from hospital to long-term care. Factors associated with transitions were identified mainly at the level of demographic and medical characteristics. Findings suggest a need for investing in stronger community-based systems of care that may reduce transitions. Further research is recommended to address knowledge gaps about complex and longitudinal care trajectories and trajectories experienced by sub-populations of people living with dementia.

"It's just so important that people's voices are heard": The dementia associate panel.

Including the views and experiences of people living with dementia in research and wider decision making is vital. The impact for the subjective wellbeing of its members of an approach known as The Dementia Associate Panel (DAP) is explored. The panel, based on a social citizenship model, aimed to provide a platform to work with and hear the voices of people living with dementia in a region of England. A mixed method approach using semi-structured interviews, self-report questionnaires, and focus groups was adopted. There were 16 participants; six people living with dementia and ten care partners. Participant motivations to join the panel were based on a desire for individuals' voices and experiences to be heard. Following participation in the panel, participants reported experiencing belonging and purpose. Collective and personal contributions to the development of local health and care policies, education provision, research studies, and to raising general public awareness about dementia was beneficial to reported participant wellbeing. The DAP model has the potential to be developed and adapted when working with people living with dementia in different settings; at national or regional levels across the globe.

Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making.

Dementia friendly (DF) is a term that has been increasingly used in the international literature to describe approaches that include and involve people living with dementia within their communities and wider society. How to support the involvement of people living with dementia to achieve dementia friendly care or support outcomes is an area that has begun to receive attention. We begin by introducing the concept of dementia friendly, the policy context and what has already been evidenced via prior reviews and conceptual discussions. We conducted a systematic review following PRISMA guidelines, resulting in the inclusion of nineteen papers that reported on the methods and approaches used to involve people living with dementia in achieving dementia friendly or supportive care outcomes. Five primary themes were identified: the potential of group-based activities to facilitate inclusion and engagement; achieving engagement in decision making; the value of developing tools to help service providers to engage those living with dementia in care decisions; the role of awareness raising and education to support the inclusion of a range of stakeholders in achieving DF support and care outcomes; the need for cultural and contextual sensitivity when seeking to engage stakeholders to achieve positive care outcomes. We conclude by considering how both the underpinning ethos of social citizenship and social inclusion need to be in place alongside a range of approaches that are adapted to fit local contexts and needs to enable the involvement of people living with dementia in achieving dementia friendly care outcomes.

A feasibility study of the impact of a communication-skills course, 'Empowered Conversations', for care partners of people living with dementia.

OBJECTIVES: To examine the feasibility, acceptability and impact of an experiential course for family care partners of people living with dementia, Empowered Conversations (EC). This study aimed to assess the impact of participation in an EC course on care partner stress levels, communication and mentalization (a form of relational-based empathy). METHOD: This study uses an uncontrolled pre-post-follow-up design. Follow-up was at 4-months after the initial EC session where baseline data were collected. One hundred and fifty-nine care partners were recruited. EC is a training course that has been designed to improve care partner communication, well-being and relationships. It is based on an integrative framework that targets the specific psychological, relationship and communication needs of carers. This framework informs targeted strategies and interactive exercises that facilitate carers to consider the goals and emotions of those they are caring for, alongside their own goals and emotions, and to use this to maximize good communication. RESULTS: Stress was significantly reduced across the three time points. Communication significantly improved across time. There were no significant changes in reflective functioning (mentalization). DISCUSSION: This study provides preliminary evidence that a communication-skills training course for care partners of people living with dementia is an acceptable and feasible intervention and has an impact both post-intervention and at follow-up. These findings require validation in a rigorous, randomized study.

A qualitative evaluation of the impact of a Good Life Club on people living with dementia and care partners.

BACKGROUND: Research suggests there is a lack of post-diagnostic support to enable people living with dementia to fulfil social and active lives throughout their dementia journey. Gardening has been found to have many benefits for people living with dementia. Although such research is important, most research frames people with dementia as passive recipients of stimulation. Research into the impact of a community-based gardening group, where people living with dementia are active in the development of an outdoor space, is underdeveloped. Knowledge about the impact of participating in such groups is also sparse. The Good Life Club (GLC) was co-developed and evaluated to respond to these gaps. OBJECTIVES: The primary aim of this article is to present the findings regarding the impact of attending the GLC on the self-reported well-being for people living with dementia and care partners. METHODS: Qualitative data were collected via 22 semi-structured interviews. Fourteen interviews were conducted before the GLC and eight after the GLC. Thematic analysis was used to analyse data. Dementia Care Mapping data were collected to supplement the interview data. FINDINGS: Four key themes were identified. The first was that participants considered having active participation in social life to be a key aspect of living a good life. The second was that the way that the GLC was set up and delivered gave the participants ownership of the GLC and within this they felt able to contribute. The third was the importance of social connectedness and peer support to the well-being of both people living with dementia and care partners. Fourth, positive mood and well-being was directly experienced through gardening. CONCLUSIONS: The combination of long-term investment of time and energy to the GLC, ongoing friendships and in-session autonomy act as key ingredients in creating a group that is relaxed, full of humour and highly valued.

'You come because it is an interesting place': The impact of attending a heritage programme on the well-being of people living with dementia and their care partners.

Promoting access to heritage settings has been acknowledged as a way to promote well-being in the United Kingdom for people living with dementia and their care partners. Yet there is a lack of information available internationally on the contribution of heritage sites to promote well-being and social inclusion for those living with dementia. This study addresses this gap by reporting on the impact for 48 people of participating in the 'Sensory Palaces' (SP) programme run by Historic Royal Palaces at Hampton Court and Kew Palaces in the United Kingdom. Two primary data sources were used; post-session interviews involving 30 participants (the person living with dementia and/or their care partners), and 131 sets of self-complete pre- and post-session mood questionnaires administered directly before and after SP session attendance. Analysis of the data sets is presented under three themes: enjoyment and engagement; connecting and learning and place, space and time. The findings demonstrate that participants highly valued the heritage sessions and reported positively on the impact this had for their individual well-being and their relationships with one another. This study highlights the opportunity for heritage sites to contribute to promoting well-being for people living with dementia.

From repeating routes to planning novel routes: the impact of landmarks and ageing on route integration and cognitive mapping.

The integration of intersecting routes is an important process for the formation of cognitive maps and thus successful navigation. Here we present a novel task to study route integration and the effects that landmark information and cognitive ageing have on this process. We created two virtual environments, each comprising five places and one central intersection but with different landmark settings: in the Identical Landmark environment, the intersection contained visually monotonic features whereas the intersection contained visually distinctive features in the Different Landmarks environment. In both environments young and older participants were presented with two short routes that both traversed through the shared intersection. To test route integration, participants were asked to either repeat the learning routes, to navigate the routes from the destination to the starting place or to plan novel routes. As expected, results demonstrate better performance when repeating or retracing routes than when planning novel routes. Performance was better in younger than older participants and in the Different Landmark environment which does not require detailed knowledge of the spatial configuration of all places in the environment. A subgroup of the older participants who performed lower on a screening test for cognitive impairments could not successfully complete the experiment or did not reach the required performance criterion. These results demonstrate that strategically placed landmarks support the integration of route knowledge into spatial representations that allow for goal-dependent flexible navigation behaviour and that earliest signs of atypical cognitive ageing affect this process of route integration.

Experiences of rural life among community-dwelling older men with dementia and their implications for social inclusion.

Current international dementia care policies focus on creating 'dementia-friendly' communities that aim to support the social inclusion of people with dementia. Although it is known that the geo-socio-cultural rural environment can impact on the experiences of people living with dementia, this can be overlooked when exploring and implementing social inclusion policies. This paper addresses an important gap in the literature by exploring the perceptions of daily life for older men (65+ years) living with dementia in three rural areas of England. Open interviews were conducted with 17 rural-dwelling older men with dementia and the data elicited were analysed thematically to construct two higher order themes. The first focussed on 'Cracking on with life in a rural idyll' and highlighted the benefits of rural living including the pleasant, natural environment, supportive informal networks and some accessible formal dementia support. The second presented 'A challenge to the idyll' and outlined difficulties the men faced including a lack of dementia awareness amongst their family and the wider rural community as well as the physical and internal motivational barriers associated with the rural landscape and their dementia. The findings were interpreted through a lens of social inclusion and demonstrated how the geo-socio-cultural rural environment both enabled and inhibited facets of the men's experiences of life in their communities. Based on these findings, the paper offers recommendations for practitioners, researchers and policy makers wishing to promote social inclusion in rural-dwelling older men living with dementia.

'Unlocking the door to being there': The contribution of creative facilitators in supporting people living with dementia to engage with heritage settings.

This article reports findings from the evaluation of 'Sensory Palaces', an innovative project developed by the charity Historic Royal Palaces, which looks after six of the United Kingdom's unoccupied royal palaces. The Sensory Palaces project employs creative facilitators to support people living with dementia and their care partners in engaging with two of these sites; Hampton Court Palace and Kew Palace. This paper focusses on the role and contribution of the creative facilitators in supporting people living with dementia to connect with these heritage spaces. It reports on data collected from facilitator interviews relating to the benefits of engaging together through sensory and creative methods to explore and share experiences of the palaces, drawing out important factors from the design, content and delivery of the sessions.

Dementia care in acute hospitals-A qualitative study on nurse managers' perceived challenges and solutions.

AIM: The aim of this study was to explore the perceived challenges of nurse managers when caring for patients with dementia in acute hospitals and identify possible solutions to address these challenges. BACKGROUND: Although dementia care in acute hospitals is suboptimal, few solutions have been identified. Multi-level factors need to be considered to promote changes in practice. METHOD: Two focus groups were held with sixteen nurse managers responsible for eleven acute medical wards in Malta. Deductive qualitative analysis using an adapted version of McKinsey 7-S model was used as an a priori framework to categorize the perceived challenges and solutions. RESULTS: The nursing managers identified a number of organizational challenges that have a direct impact on the quality of care of patients with dementia. They also suggested a number of solutions such as realigning the hospital strategy, improving training and care coordination, redesigning the ward environment and changing leadership styles. CONCLUSION: This study highlight the complexity of improving dementia care in hospitals and continues to show that a system-wide approach is needed. IMPLICATIONS FOR NURSING MANAGEMENT: Understanding the challenges and identifying possible solutions can help hospital staff provide better person-centred dementia care.

The perceived and observed needs of patients with dementia admitted to acute medical wards.

It is acknowledged that the needs of persons living with dementia admitted in acute hospitals are not always met. Previous studies have focused on the perceived needs of professional caregivers or family members whilst the voices of patients with dementia in acute hospitals have not been extensively reported. This may have contributed to the under-recognition of the needs of persons living with dementia. The aim of this study was to categorise the perceived and observed needs of persons with dementia admitted in acute medical wards and to explore whether these needs are being or have been met. Thirteen people with dementia in three medical wards, who could verbally communicate with the researcher, were purposively selected as research participants. Semi-structured interviews were conducted to elicit each participant's experiences of their hospital stay and whether their needs were perceived to have been/are being met. Moreover, routine care with the same participants was observed using Dementia Care Mapping. Maslow's Hierarchy of Needs was used as a framework to categorise care needs. Our findings demonstrate that basic needs such as toileting, feeding, drinking, continence and comfort were not always met. Moreover, the largest gap between met and unmet needs was found in patients who were either under constant observation or unable to communicate. Too much emphasis was perceived and observed to be given on what staff considered as safety needs at the expense of other needs. The patients' need for social contact and self-esteem such as dignity and respect were often ignored and this led to patients feeling devalued. Hospital staff have to be more aware of the holistic needs of patients with dementia in acute settings and the way care is delivered in order to make up for these unmet needs, thus facilitating person-centred care.

Person-centered dementia care in acute hospital wards-The influence of staff knowledge and attitudes.

Person-centered dementia care practices in acute hospital wards are suboptimal and not commonly measured. Although previous research has indicated that the work environment of staff influences their perceptions of person-centeredness, few studies have examined how their personal attributes, such as their level of dementia knowledge and attitudes, influence their person-centered dementia care practices. A questionnaire was distributed to test the relationship between staff perceptions of person-centered dementia care and their dementia knowledge and attitudes in general medical wards. The results showed that staff with better dementia knowledge were significantly more critical about the extent they were using evidence-based guidelines and external expertise. Staff with better attitudes perceived themselves as using more individualized care practices. The findings demonstrate that to enhance person-centered dementia care in acute hospitals, staff training programs should develop both their intellectual and interpersonal skills to improve their knowledge and attitudes.