In Canada, the literature regarding First Nations people’s experiences with dementia is sparse, as is the literature relating to the health and wellness of Indigenous dementia caregivers. Colonization has imposed physical, psychological and structural disadvantages on Indigenous communities that impact the family’s ability to provide informal dementia care. The First Nations senior population is growing rapidly and there is a pressing need to gather knowledge about the unique needs of First Nations informal dementia caregivers. This doctoral research seeks to contribute to the growing body of literature on this vitally important topic. This thesis reports the findings from my PhD research study, which was conducted in collaboration with the Nuu-Chah-Nulth Tribal Council, and with generous support from the Nuu-Chah-Nulth community. Using an Indigenous storytelling research method, the study explored the following questions: What are the experiences of Nuu-Chah-Nulth First Nations dementia caregivers? What support services do caregivers access and what services do they perceive are lacking? Nine Nuu-Chah-Nulth caregivers shared their experiences providing support and care to a family member with memory loss, and their perspectives on memory care resources. Interviews were conducted in various locations within the Nuu-Chah-Nulth territories to gather the caregiver’s knowledge. The author’s story as an informal dementia caregiver is also interwoven throughout the dissertation. The Nuu-Chah-Nulth caregivers narratives revealed diverse and complex experiences with the following central themes and sub-themes: trauma over the life-cycle (residential school, family violence, grief and loss); pressures of care-giving (managing the symptoms of dementia, health and family dynamics); and finally, participants’ perceptions of community resources. The findings from this research reveal that Nuu-Chah-Nulth dementia caregivers and the family members they supported were still healing from the various traumas that were inflicted on their mind, body and spirit through residential school experiences. Most of the caregivers reported that they prefer to care for their family member at home but community supports are limited. / Graduate

Yes / Ex Memoria is a short film - just 15 minutes long - which focuses on the experience of Eva, a woman with dementia living in a nursing home. The film - which is the result of a collaboration between Bradford Dementia Group (BDG), writer/director Josh Appignanesi, and producer Mia Bays - attempts to show how life might be experienced from Eva's point of view, in her 'version of reality'. In this article I will outline the to the making of Ex Memoria, explain how the film is being used on the Dementia Studies courses provided by BDG, and - without giving away too much of the story for people who haven't yet seen the film - summarise some of the responses to it.

Yes / The development of dementia friendly communities is a current global and national priority for the UK. As a response to policy, there have been a number of dementia awareness initiatives disseminated with the aim of reducing the stigma associated with a diagnosis of dementia. The inclusion of adolescents in such initiatives is imperative in order to sustain dementia friendly communities. With this in mind, the aim of this study was to establish the dementia education needs of adolescents and effective dissemination strategies to convey key messages. A total of 42 adolescents aged 12 to 18 years participated in eight focus group discussions. Key themes to emerge from discussions included: the importance of dementia awareness, topics of interest within dementia, preferred methods of learning, the inclusion of the person living with dementia and the use of social media. The findings of the study will enable the development of appropriate dementia awareness initiatives for adolescents and thus facilitate the sustainability of dementia friendly communities.

Yes / Objectives: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. Method: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services. Results: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for family relationships. Conclusion: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed. / This work was supported by the Alzheimer’s Society under grant number 278 AS-PG-15b-034.

This thesis uses a narrative approach to explore how hallucinations are understood by people with dementia, their carers and community mental health nurses. The study aims to make visible the multiple enactments of realities of hallucinations as they are practiced within a community mental health setting. While existing research shows a growing body of research about experiences of dementia, the experience of hallucinations has been unexplored. Research about hallucinations has predominantly focused on epidemiology or pharmaceutical interventions. The research was conducted in one area of Scotland, using three triadic case studies comprising a person with dementia living at home, their carer and community nurse. Data were collected through conversational interviews. In this study realities are conceptualised as enacted and multiple. The study was informed by an ethic of care approach which critiques the view of people as isolated individuals. People are understood to live in relationships within which they co-construct narratives. It provided an ethical framework to research relationships and data analysis. Data were analysed using voice centred relational analysis, which uses four separate ‘listenings’ for each interview. This method identifies the multiple voices speaking and allows a high degree of reflexivity. I-poems were produced for each of the interviews and some visual illustrations were used in different ways to illustrate the analysis and allow an alternative interpretive perspective on the data. The analysis reveals that people with dementia and their carers contextualise their understanding of hallucinations into their narrative identity. They strive for continuity but also experience them as potential threats. Ambiguity and uncertainty are characteristic of the experience of hallucinations of people with dementia and carers and I suggest that liminality is a useful concept to understand this. Community nurses have multiple, and fluid understandings of hallucinations; they negotiate these different hallucinations within a situated practice enactment. Their decision to act on hallucinations does not depend on whether they relate to consensus reality, but whether they cause distress. The findings of this study highlight the complexities and ambiguities of hallucinations within dementia and shows how they are managed in practice. The theoretical perspectives of enacted realities and ethic of care, alongside creative methods enhances understanding of the ephemeral nature of hallucinations. This study adds to literature challenging the exclusion of the people with dementia from research by demonstrating that they are able to talk about their experiences of hallucinations. The study contributes to the story of hallucinations in dementia by disrupting the fixed boundaries of the dominant discourse that views hallucinations as a clear cut break with reality.

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Background: In Sweden, eight percent of all people by the age of 65 years or older have a dementia disease. The healthy spouse received or unconsciously took the role as caregiver in the home which could cause psychological and physical stress. Therefore it is important that nurses have good understanding of how the healthy spouses experience their life situation. Aim: The aim of this study was to describe spouses´experiences of living with a partner with dementia disease. Methods: This literature study was performed with a qualitative method. Nine scientific articles have been quality checked and analyzed with inspiration from Friberg´s way of thinking. The databases Cinahl and PubMed were used. Results: The literature study resulted in the construction of five categories followed by 13 subcategories. The result of the literature study shows that the healthy spouses are affected physically and mentally by living with a partner with dementia disease. A change in the life situation, which entails that the healthy spouse must adapt and change everyday life for the dementia suffering partner's abilities and skills. Conclusion: Living with a partner with dementia disease means a strain for the healthy spouses. It is important for nurses to pay attention to the healthy spouses´well-being. By this study the nurses hopefully understand that it is important to focus on both partners´ needs.

published_or_final_version / abstract / Medicine / Doctoral / Doctor of Philosophy

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