Alison Phinney

• PhD
• Professor at University of British Columbia

Social citizenship is increasingly adopted in academic circles as a theoretical perspective foregrounding the rights of people with dementia to full participation in their community. However, what this means in practice is poorly understood. Using methods of participatory action research and developmental evaluation, our team conducted a four-year...

The majority of people with dementia live at home, often disconnected and isolated from their community. Canada’s Public Health Agency recognizes that community-based organizations are well positioned to address this issue, and through its Dementia Community Investment is advancing social innovation as a strategy for increasing inclusion, well-bein...

Background People with dementia often do not receive optimal person‐centred care (PCC) in care settings. Family members can play a vital role as care partners to support the person with dementia with their psychosocial needs. Participatory research that includes the perspectives of those with lived experience is essential for developing high‐qualit...

Objectives: The Building Capacity Project is an asset-based community development initiative that aims to reduce stigma and promote social inclusion for people with dementia. Using a community-based participatory approach, we conducted research to examine the relational patterns and participatory practices within and across project sites in two di...

Background: Researchers are increasingly being called upon to involve people with dementia in research that pertains to them. Participatory Action Research (PAR) has been one of the approaches that has been utilized to do this. How people understand and apply the ideas behind this approach however has often been atheoretical and diverse. This has...

Neighbourhoods are known to help maintain functional abilities and enable out-of-home activities and social participation for people living with dementia. Dementia friendly and inclusive communities (DFC) frameworks recognize the importance of developing supportive and empowering environments for people living with dementia and their families. Beyo...

Around the world people with dementia face stigma and social exclusion. An interdisciplinary team from Seattle, Washington, and Vancouver, British Columbia led a collaborative project developing cross-border community partnerships to increase awareness and reduce stigma, promote social participation of people with dementia, and enhance their well-b...

People living with dementia face persistent stigma, discrimination and social exclusion, with significant emotional, physical and social consequences. Addressing this requires changing attitudes and fostering actions for communities to include people with dementia as citizens with agency and self-determination. This presentation highlights the work...

Background: This article describes the development and refinement of a component of a first-year nursing course called ‘Theoretical perspectives in nursing care: complexities in seniors care’. Initially developed in 2020 in response to the pandemic restrictions and guided by the philosophy of person- centredness and person-centred practice, a senio...

Introduction: Individuals who remain in hospital once their health has stabilised experience delayed discharge. This often occurs for people with dementia when care needs exceed what can be managed at home. There is little research that takes into account the experience and needs of these patients. This Interpretive Description (ID) study, theoret...

Background and Objectives In March 2020, pandemic management strategies were mandated across long-term care homes in British Columbia, Canada to control the effects of COVID-19. This study describes and contextualizes the impact of visitation, infection prevention and control, and staffing strategies on the perceived health and well-being of reside...

Citizenship has provided an important conceptual framework in dementia research and practice over the past fifteen years. To date, there has been no attempt to synthesize the multiple perspectives that have arisen in this literature. The purpose of this paper is to explore, reflect on, and contrast, the key concepts and trends in the citizenship di...

Context: To slow the spread of COVID-19 within the Canadian long-term residential care (LTRC) sector, a series of pandemic management strategies were introduced, including restricted visitation and single site employment. These strategies were enacted to prevent and control infection, resulting in unknown impact on direct care staff and staff capac...

The COVID-19 pandemic brings challenges to patient partnerships in research. In-person research meetings with patient partners were prohibited. In this presentation, we outline specific issues we encountered in a patient-led dementia research project, which involved a literature review study and gathering community stakeholders to identify the top...

Introduction Building Capacity for Meaningful Participation by People Living with Dementia is being undertaken in Canada under the umbrella of the federally funded Dementia Community Investment. This four-year Building Capacity Project (2019–23) models a bottom-up cross-sectoral approach to building and connecting community-based activities that pr...

This chapter describes a project in which researchers, community programs, and people living with dementia are working together to promote social inclusion, raise awareness and reduce stigma around dementia. Guided by principles of social citizenship, the Building Capacity Project (2019–2023) is implementing an asset-based community development app...

This book engages with the realities of life for people living with dementia at home and within their neighbourhoods while giving voices to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the United Kingdom. Moreover, the voices highlight the urgent need for changes to ensure equal access and...

Aims: This scoping review explores key strategies of creating inclusive dementia-friendly communities that support people with dementia and their informal caregiver. Background: Social exclusion is commonly reported by people with dementia. Dementia-friendly community has emerged as an idea with potential to contribute to cultivating social inclusi...

The language of social citizenship has emerged in the academic literature as one way of shifting the discourse to counter persistent problems of stigma and social exclusion for people with dementia. What this means and how it is experienced however from the perspective of those with dementia remains unclear. As part of a larger Participatory Action...

Nursing education tends to focus on complex clinical issues affecting older adults who are acutely ill or in long-term care. This creates challenges for educators wanting to expose students to a greater range of experience, including realities of healthy aging. Opportunities to do things differently were presented when an established undergraduate...

Introduction The number of people with dementia is increasing worldwide, with the majority of people with dementia living at home in the community. WHO calls for global action on the public health response to dementia. Social exclusion is commonly reported by people with dementia and their families. Dementia-friendly and inclusive community has eme...

Making Art for Making Place, a joint education and research project, engaged post-secondary fine arts students in the creation of paintings for residents of a transitional care facility. The purpose of the project was to explore how improving the living environment through art could benefit the residents with dementia while considering the impact t...

Nurses are central to the care of older people in hospital. One issue of particular importance to the experience and outcomes of hospitalized older people is their cognitive function. This article reports findings from a focused ethnographic study demonstrating how documentation systems-documents and the social processes surrounding their use-contr...

Context: As a result of changing demographics, the number of older adults living in long-term care homes (LTCHs) is expected to rise dramatically. Thus, there is a pressing need for better understanding of how the social organization of care may facilitate or hinder the quality of work-life and care in LTCHs. Objectives: This study explored how the...

BACKGROUND: The concept of social citizenship is gaining traction in the field of dementia studies, but as a practical tool to guide development of supports and services, it remains poorly understood. A one year project to promote collaboration between University of Washington in Seattle and University of British Columbia in Vancouver addressed thi...

The Emily Carr University (ECU) Zeitgeist Project is a unique design-based project concept where communication design students and residents in care homes engage in a variety of activities over six sessions together, with the goal of co-creating mini-publications featuring the residents’ stories. While the project’s overarching purpose is to provid...

The Zeitgeist project asks what role design students can play in enhancing creative endeavours and wellbeing of residents through an intergenerational co-design programme. Between Spring 2018 and Summer 2019, Zeitgeist brought together undergraduate design students and residents of long-term care homes for a project that challenged them to co-desig...

In Spring 2018 and then again in Fall 2018, residents in a long-term care facility came together with undergraduate communication design students, to co-design and co-write a mini publication series featuring resident stories. Through our project, small teams of two to three students were paired with two to three residents, to create a mini-publica...

This chapter brings together innovative uses of multimedia tools to explore narratives of people living with dementia. The three projects described here share an understanding of the role of narrative-based reminiscing in fostering resilience, particularly as applied to people with dementia. This collective work focuses on supporting people living...

According to Health Canada (2016), only about 11% of older men meet recommended guidelines for physical activity, and participation decreases as men age. This places men at considerable risk of poor health, including an array of chronic diseases. A demographic shift toward a greater population of less healthy older men would substantially challenge...

In this action study, researchers worked with a team of interdisciplinary practitioners to co-develop knowledge and practice in a medical unit of a large urban hospital in Canada. An appreciative inquiry approach was utilized to guide the project. This paper specifically focuses on examining the research experiences of practitioners, their accounts...

Objectives: Resident-to-resident (RRA) abuse is increasingly recognized as a significant problem in long-term residential care.Families have a constant presence in this setting, yet their inclusion in research about RRA is minimal. The purpose of this study was to examine family members' experiences and management of RRA. Methods: The methodolog...

In this article, we discuss how video-reflexive ethnography may be useful in engaging staff to improve dementia care in a hospital medical unit. Seven patients with dementia were involved in the production of patient-story videos, and fifty members of staff (nurses, physicians, and allied health practitioners) participated in video-reflexive groups...

Purpose In this action study, researchers worked with a team of interdisciplinary practitioners to co-develop knowledge and practice in a medical unit of a large urban hospital in Canada. An appreciative inquiry approach was utilized to guide the project. This article specifically focuses on examining the research experiences of practitioners and t...

Among gerontologists and health researchers, there is growing recognition of the importance of social participation and inclusion towards the health, well-being and quality of life of people with dementia. This paper examines the role of public artworks to facilitate the social citizenship of people with dementia. It is based on a subset of data fr...

Through our respective programs of research, we seek to improve long term residential care services, support meaningful activity for older people in community settings, and enhance the physical environment for older patients in acute care hospitals. What unites our work is a commitment to using research as a vehicle for effecting positive change in...

Responsive behaviours between residents (RBBR) are negative and aggressive physical, sexual, or verbal interactions that occur between some older adults living in Residential Long-Term Care (RLTC). Despite the growing understanding of RBBR, to date research has focused on residents and staff, yet, families, many of whom spend a significant amount o...

Many older people are admitted to long-term residential care (LTRC) when families are unable to support them living at home. However, this does not mean that families cease to be involved, or that they simply adopt the role of “friendly visitor”. Rather, it is increasingly recognized that families make important contributions to care work in these...

In Canada, families will be contributing upwards of 60 million hours of care per year in nursing homes by 2018. Even though families are a cornerstone of care in this sector, their involvement, both with their relative and the broader functioning of the nursing home, is largely invisible. Past research has indicated that families often experience r...

Background Recognising demographic changes and importance of the environment in influencing the care experience of patients with dementia, there is a need for developing the knowledge base to improve hospital environments. Involving patients in the development of the hospital environment can be a way to create more responsive services. To date, few...

RÉSUMÉ Au cours des trois dernières décennies, il y a eu une augmentation notable dans les études de pratique concernant changements dans les interventions en soins de longue durée (SLD). Cette critique, basé sur une approche réaliste modifiée, répond aux questions suivantes: Quelles caractéristiques de changement d’intervention fonctionnent bien?...

The proliferation of community-based activity programs for people with dementia suggests an appetite for new approaches to support quality of life and well-being for this population. Such groups also have potential to promote social citizenship, although this remains poorly understood. This article presents findings from a subset of data from an et...

Person-centered care is heavily dependent on effective information exchange among health care team members. We explored the organizational systems that influence resident care attendants’ (RCAs) access to care information in long-term care (LTC) settings. We conducted an institutional ethnography in three LTC facilities. Investigative methods inclu...

This chapter offers an account of the ethical issues arising from the use of video in a research project investigating the experiences of people with advanced dementia who resided in nursing home environments. While the use of video enabled the researchers to gather evocative and contextualized data, respecting research participants as well as othe...

Physical activity is beneficial for people with dementia, but little research explores subjective experiences of physical activity in this population. Interpretive description guided the analysis of 26 interviews conducted with 12 people with dementia. Three themes described the subjective meaning of everyday physical activity: Participants were at...

To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of aging families of community-dwelling adults with ID. An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were r...

Participant observation (PO) is an important method of data collection used in a variety of research methodologies. PO can inform theory development by providing understanding of participants’ behaviors and the contexts that influence their behaviors. Because theory development is important in grounded theory studies, we emphasize theoretical contr...

The objective of this study was to explore how social interactions and body image are influenced by perceived oral health among older people who live in long-term care facilities. Social interactions among frail elders in long-term care (LTC) facilities are limited, but to what extent body image and oral health influence their social relations is p...

The Computer Interactive Reminiscence Conversation Aid (CIRCA) is a software program using touch screen technology and digital materials from public archives to support conversation between people with dementia and their carers. In this 2-phase study, we first worked with seniors' focus groups to identify and select relevant content for a regional...

The increased incidence of health challenges with aging means that nurses are increasingly caring for older adults, often in hospital settings. Research about the complexity of nursing practice with this population remains limited. To seek an explanation of nursing practice with hospitalised older adults. Design. A grounded theory study guided by s...

RÉSUMÉ Cette étude utilisant des méthodes mixtes a évalué l'effet d'un programme d'arts communautaires engagés sur le bien-être physique, émotionnel et social des personnes âgées. Ateliers hebdomadaires ont été offerts pendant une période de trois ans dans des centres communautaires où les artistes ont collaboré avec quatre groupes de personnes âgé...

Objective: To explore the perspectives of adults with intellectual disabilities (IDs) on helpful interactions with their family physicians. Design: Exploratory, qualitative study. Setting: Vancouver, BC. Participants: Purposive sample of 11 community-dwelling adults with IDs. Methods: In-depth, semistructured interviews were conducted face...

Background: Men's health help-seeking behaviours vary considerably depending on the context. The current empirical literature on the influence of masculinity on college men's attitudes towards mental health-related help-seeking is largely limited to investigations involving psychology students. Aim: To describe the connections between masculinit...

p>Ethnographic methods (observations and interviews) were used to investigate the physical environment of a geriatric psychiatry unit to understand how it meets the needs of patients with mental health conditions. Four interrelated themes of environmental qualities emerged as central in promoting healing: therapeutic , supportive of functional inde...

The high incidence of depression among older men has been linked to numerous factors. In this qualitative descriptive study of 30 older, Canadian-based men who experienced depression, we explored the connections between participants’ depression, masculinities, work, and retirement. Our analyses revealed three thematic findings. The recursive relati...

Care work by family and friends is recognized as a cornerstone of community-based care for older adults; however, the role of families in institutional-based care work has been less well understood and researched. Drawing on findings from a critical ethnographic study, this article aims to examine the unique role of highly involved family members w...

In this article we draw from a larger study to examine experiences of two men and their families as they negotiate changing patterns of everyday activity in the months after receiving a diagnosis of dementia. We conducted in-depth interpretive phenomenological analysis of interview and observational data that were gathered from the men and various...

RÉSUMÉ L’inclusion sociale est un facteur important pour promouvoir la santé optimale et le bien-être des personnes âgées. Les arts communautaires engagés (ACE) ont été promus comme moyen de soutenir l’inclusion sociale des personnes âgées, mais peu de preuves empiriques ont été rapportées. Le but de cette étude était d’explorer le rôle d’un progra...

baumbusch j., dahlke s. & phinney a. (2012) Nursing students’ knowledge and beliefs about care of older adults in a shifting context of nursing education. Journal of Advanced Nursing68(11), 2550–2558. Aim. To a report a study of improvements in students’ knowledge and beliefs about nursing care of older adults following completion of an introductor...

The impact of communication impairment in dementia on families is widely recognized in both the clinical and research literature, as is the relevance of family-centred practice. However, the way in which "family" is defined in these domains varies widely, and most often it refers to single individual family members who represent the family as a who...

This chapter brings together recent innovative uses of multimedia tools to explore narratives of people with a diagnosis of dementia. The foundations for this work are located in an understanding of the concepts of resilience and well-being and the role of narrative-based reminiscence in fostering resilience, especially as applied to people with de...

Spiritual care of people with dementia can be challenging, in part because the impact of the disease on personhood is so poorly understood. To address this issue, in-depth interviews with people with dementia were analyzed to uncover the narratives that framed their sense of life as meaningful. Most common were retained narratives showing how meani...

This qualitative study explored the impact of a community-based social recreation group for people with early dementia, focusing on experiences and perceptions of the participants themselves. Ten interviews and 40 hours of observation were conducted. Analysis revealed seven themes: Everybody gets along really well; it's more fun than anything; we'r...

Research exploring the experiences of persons living with dementia has been criticized for failing to situate individual experience in a broader socio-cultural context. In particular, little attention has been devoted to examining how social location shapes the subjective experiences and responses of persons with dementia. This paper examines how o...

Attrition rates of male nursing students exceed those of females yet the experiences of male students in nursing school are poorly understood. This interpretive ethnographic study explored the experiences of male nursing students and female nursing instructors in the context of classroom education. Data collection consisted of participant observati...

More than half of hospitalized older adults will experience delirium, which--if left untreated--can lead to detrimental outcomes. Despite the prevalence and severity of delirium, nurses recognize less than one third of cases. Because little is known about how nurses manage this problem, a qualitative study was conducted to explore how nurses care f...

While it is assumed that persons with dementia benefit from being involved in meaningful activity, research examining this claim is limited. In particular, how individuals with dementia perceive this involvement is poorly understood. Therefore, the purpose of this research is to determine what constitutes meaningful activity from the perspective of...

Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interac...

Involvement in meaningful activity may be helpful for those with dementia, although it is a poorly understood phenomenon among those living in the community with family members. An interpretive phenomenological study was conducted with eight families to determine how family members support involvement in activity of persons with dementia and what i...

Although diabetes education encourages people to monitor symptoms of glycemic imbalance, there has been little research on how people from ethnic minorities recognize and understand their symptoms. To explore this question, semi-structured interviews were conducted with 23 African Americans over age 60 living with diabetes. Thematic analysis reveal...

Although diabetes education encourages people to monitor symptoms of glycemic imbalance, there has been little research on how people from ethnic minorities recognize and understand their symptoms. To explore this question, semi-structured interviews were conducted with 23 African Americans over age 60 living with diabetes. Thematic analysis reveal...

Little is known about how people with dementia live day to day with this illness and the meaning it has for them. To explore this question, three in-depth interviews and participant observation were conducted with nine people experiencing mild to moderate dementia (MMSE 16–23) and their family caregivers. An interpretive phenomenological analysis r...

This interpretive phenomenological study examined how awareness of dementia symptoms fluctuates over time and circumstance, thus forcing the breakdown of the illness narrative. Five women and four men (age 64–88 years) with mild to moderate Alzheimer’s disease (MMSE 16–23) participated in this study along with their family caregivers. In-depth inte...

: This interpretive phenomenological study explores the commonalities and differences in how people with dementia understand the meaning of their symptoms, comparing those who are aware of their impairment, those who are unaware, and those who have mixed awareness. Participants included five women and four men with mild to moderate Alzheimer's dise...

To develop and evaluate the use of cognitive monitoring for detecting episodes of acute, excess cognitive decline in individual Alzheimer's disease (AD) patients, the authors conducted six repeated cognitive assessments over 11 weeks on 41 otherwise healthy people with mild-to-moderate AD. Patients demonstrated stable cognitive performance over 11...

This study describes the illness experience of dementia from the patient's perspective. Five people with Alzheimer's disease and their spouses were interviewed and observed during home visits. Thematic analysis revealed two themes: being unsure and trying to be normal. Being unsure describes people's fluctuating experience of symptoms that leaves t...