Elaine Wiersma

Using Photovoice with people with early-stage Alzheimer’s disease: A discussion of methodology

Many scholars and activists have challenged researchers to do research ‘with’ not ‘for’ or ‘on’ people with Alzheimer’s disease and related dementias. Photovoice is a relatively new qualitative methodology that involves giving cameras to participants to record and document their experiences in ways that can create change. In this study, the Photovoice method was used with a group of participants in early stages Alzheimer’s disease to explore the use of Photovoice as a methodology with this population. Specifically, I was hoping to understand how Photovoice could be used as a methodology with this group, and to examine the benefits and challenges of using Photovoice with people with Alzheimer’s disease. This paper discusses some of the practical challenges arising out of using this methodology with people with early stage Alzheimer’s disease as well as some of the issues surrounding research ethics, consent, and capacity.

From social network to safety net: Dementia-friendly communities in rural northern Ontario

Dementia-friendly communities, as communities that enable people with dementia to remain involved and active and have control over their lives for as long as possible, centrally involve social support and social networks for people living with dementia. The purpose of this research was to explore and understand the context of dementia in rural northern communities in Ontario with an emphasis on understanding how dementia friendly the communities were. Using qualitative methods, interviews were conducted with a total of 71 participants, including 37 health service providers, 15 care partners, 2 people living with dementia and 17 other community members such as local business owners, volunteers, local leaders, friends and neighbours. The strong social networks and informal social support that were available to people living with dementia, and the strong commitment by community members, families and health care providers to support people with dementia, were considered a significant asset to the community. A culture of care and looking out for each other contributed to the social support provided. In particular, the familiarity with others provided a supportive community environment. People with dementia were looked out for by community members, and continued to remain connected in their communities. The social support provided in these communities demonstrated that although fragile, this type of support offered somewhat of a safety net for individuals living with dementia. This work provides important insights into the landscape of dementia in rural northern Ontario communities, and the strong social supports that sustain people with dementia remaining in the communities.

Life around ... : staff's perceptions of residents' adjustment into long-term care.

Le déménagement à un établissement de service de soins à long terme peut être particulière-ment traumatique pour de nouveaux résidents. Le personnel peut faciliter cette transition dans un certain nombre de façons. Cependant, les perceptions du personnel du processus de transition et les expériences des résidents joueront un rôle significatif en déterminant le type d’appui qui est donné aux résidents pendant cette transition. Le but de cette recherche était d’examiner les perceptions du personnel d’une personne venant à vivre dans un environnement de soins à long terme. Trois thèmes principaux ont émergé après l’analyse d’entrevues détaillées avec le personnel d’un service de soin à long terme qui englobaient les descriptions de la vie des résidents. Essentiellement, le personnel a décrit comment les résidents ont appris à vivre une vie autour de divers facteurs en trois catégories principaux: une vie autour des pertes, une vie autour de l’établissement résidentiel, et une vie autour du corps.

Masculinity, ageing bodies, and leisure

In the shift towards understanding the lived leisure experiences of women, the experiences of men have generally been left under-studied, particularly from a gendered analysis perspective. As such, we know less about the leisure experiences of men, especially the lives of older men. In response to this gap, the purpose of this research was to explore the meaning of masculinity in old age and to understand ageing for men, focusing primarily on their leisure experiences. Using constructivist qualitative methodology, 14 older men were interviewed about their experiences of ageing and as older men. A significant site or context through which ageing was experienced was during leisure, with the primary vehicle for experiencing ageing being the body. These experiences included physical limitations to activity participation and social interactions in leisure settings that reinforced identities as ‘old men’, with the end result being a narrowing of leisure activities and opportunities. The body, ageing, and leisure experiences were phenomena that were inextricably entwined as the men described their experiences of ageing. The possibility that leisure may be a site where mens traditional masculine identities are contested and identities of ‘old men’ are ascribed suggests that the experiences of leisure may be more complex than leisure has traditionally been described in literature. The importance of expanding the dimensions of leisure and paying closer attention to the body in leisure studies is discussed.

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia.

Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia ‘live well’ with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 13 care partners, and three service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around four inter-related themes: creating safe spaces; maintaining voice and being heard; managing the balancing act; and the importance of solidarity. Underpinning these discussions was the fifth theme, recognition that ‘one size doesn’t fit all’. Overall an important finding was that the presence of family care-partners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited.

Looking Forward and Looking Back: Older Adults' Views of the Impacts of Stopping Driving

ABSTRACT This project aimed to identify the impact of driving cessation from the perspectives of older drivers and former drivers. Participants included 17 adults aged 65–88 years residing in a city in Northwestern Ontario, Canada. Using a semi-structured interview guide (with questions regarding mobility, personal impact, impact on others, engagement with life, and finances), two focus groups were held with nine current drivers, and one-on-one interviews were held with six former drivers and two current drivers. Two themes emerged concerning stopping driving. The first theme included discussions on experiencing lifestyle changes, relationship impacts, and emotional impacts. The second, the adjustment to stopping driving, included practical adaptations, and emotional responses such as appreciation, resistance, acceptance, and being positive. Although the impacts of stopping driving were substantial, there were few discrepancies between what was anticipated and what was experienced. This information could assist with developing interventions to ease the transition to former-driver status.

Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship

The importance of stigma in shaping the experiences of people living with dementia and challenging their social citizenship emerges repeatedly as a powerful and negative force. In a recent participatory action research (PAR) study focused on understanding what people with dementia need to know to live well, this link between stigma, discrimination and social citizenship emerged once again. A group of people living with dementia (n=8) met monthly for 16months to discuss their experiences and advise on the curriculum of a proposed self-management program. From the first introduction, stigma was identified as a defining feature of the experience of living well with dementia. This paper analyses this groups talk around stigma and discrimination, drawing attention to the critical role that diagnostic disclosure has in both positioning people with dementia in a stigmatizing way and, also, acting as a strategy of resistance that facilitates full social citizenship.

TRAINING GROUP PROGRAM FACILITATORS IN THE ART OF DIALOGUE EDUCATIONTM

causes of less common forms. The four week course led by Tim Shakespeare at the Dementia Research Centre features video interviews with dementia experts at the UCL Institute of Neurology and Division of Psychiatry, and also people who have been diagnosed with dementia, and people who care for a family member with dementia. We hope this will give a better understanding of the impact that a diagnosis of dementia brings. The course is structured in four weeks: 1 What if dementia runs in the family? Explore the challenges that face families and ground-breaking research taking place with people affected by familial Alzheimer’s disease, where the condition runs in the family and often starts at a young age. 2 What if dementia affects behaviour and personality? Dementia is not just about memory loss – we investigate the particular challenges for diagnosis and care for people with !Some people with dementia experience hallucinations, and many describe fluctuations in their symptoms over time. These aspects are particularly clear in dementia with Lewy bodies, which you’ll learn about in Week 3. 4 What if dementia affects your vision, not your memory? People with posterior cortical atrophy experience changes in the way the brain processes visual information; we’ll explore this condition and the research taking place to help people live better with visual impairment related to dementia. The course is presented on an e-learning platform ‘Futurelearn’ www.futurelearn.com/ courses/faces-of-dementia. A key part of this platform is the integration of social learning. Each step of the course (e.g. a video, article, multiple choice questions) is accompanied by a discussion board and the steps are designed to stimulate conversation so that individuals learn not only from the experts and course materials, but also from the experiences of each other. P3-341 TRAINING GROUP PROGRAM FACILITATORS IN THE ART OF DIALOGUE EDUCATION Kathy Hickman, Elaine Wiersma, Lisa Loiselle, Alzheimer Society of Ontario/brainXchange, Toronto, ON, Canada; 2 Centre for Education and Research in Health and Aging, Lakehead University, Thunder Bay, ON, Canada; University of Waterloo Murray Alzheimer Research and Education Program, Waterloo, ON, Canada. Contact e-mail: khickman@ alzheimeront.org Background:Dialogue Education is an adult education learning philosophy that moves away from traditional didactic teaching, recognizing that adults are active decision-makers in their own learning, and connects new content with learners’ experiences and expertise (Global Learning Partners, n.d.; Vella, 2008). Dialogue Education TM has been adopted by the Alzheimer Society of Ontario as a pedagogical tool in developing education series and programs for people with dementia and care partners. Through the development of a self-management program for people living with dementia, 12 staff members who facilitate programs for people with dementia and care partners participated in a 3-day workshop onDialogue Education TM and self-management. Seventeen participants in the training also participated in semi-structured interviews reflecting on their experiences in the training. The purpose of this evaluation was to explore participants’ experiences in the training, to understand what they found helpful, what more information they would like, and how they felt about the training. Key themes emerging from the interviews included teaching by modelling, flexibility in facilitation, self-reflection, learning from colleagues, validation of current approaches to facilitation, andmoving toward action. Teaching by modelling encompassed participants’ views that learning occurred through observing the facilitators putting Dialogue Education TM principles into action in the training. The training involved opportunities for self-reflection, which participants found helpful. Engaging with and learning from colleagues was a helpful part of the three-day training. The information also helped to validate what program facilitators were already doing in their learning and program events for people with dementia and care partners. Moving toward action encompassed the many comments from participants about how they would be taking this information and putting it into action. The findings from this study provide important directions on better understanding the impacts of education and learning events for program facilitators, and can assist in determining how to maximize the impact of education events. References Global Learning Partners (n.d.) About Dialogue Education. Retrieved January 1, 2016 at http://www.globallearningpartners.com/about/ about-dialogue-education. Vella, J. (2008). On teaching and learning: Putting the principles and practices of dialogue education into action. San Francisco, CA: Jossey-Bass.