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There Is So Much I Could Say (2022) is a collection of poetry written by people with rarer forms of dementia who participated in a poetry research project as part of the Rare Dementia Support Impact Study. The volume was coordinated and edited by two facilitating poets, Martha Gould in Canada and Lawrence Wilson in the United Kingdom. Illustrations were drawn by Suki Hubbard and the foreword was provided by the filmmaker Harry Macqueen.

There is so much I could say book cover

Martha Gould and Mary Pat Sullivan discussed the process of the collection’s development with the League of Canadian Poets and The Canadian Association for Health Humanities Cross Pollinations Virtual Round Series

Cross-Pollinations Virtual Round Series

Journal Publications

There is a growing body of literature on peer support in dementia care reporting a variety of positive outcomes for people living with dementia and care partners. However, the lack of recognition of dementia diversity has meant that people living with a rare or young onset dementia have not had opportunities to participate in tailored peer support. We conducted a review of the literature to see what could be learned from existing research. We learned that peer support models for people with rare and young onset dementia were needed, including co-produced models, and that these required further development and evaluation.

Sullivan, M.P., Williams, V., Grillo, A., McKee-Jackson, R., Camic, P.M., Windle, G., Brotherhood, E., Stott, J. and Crutch, S.J. (2022) Peer support for people living with a rare or young onset dementia. Dementia. Online First. doi:10.1177/14713012221126368

View the article here: https://journals-sagepub-com.roxy.nipissingu.ca/doi/full/10.1177/14713012221126368

Preventing and addressing social isolation and loneliness among older adults is important because of the known associations with negative health outcomes. The Canadian Coalition for Seniors’ Mental Health (CCSMH) took to creating clinical guidelines through this study to address this challenge in older adults. 

Conn, D. K., Billard, T., Dupuis-Blanchard, S., Freedman, A. K., Hoang, P. M., Levasseur, M., Newall, N. E., Sullivan, M. P., and Wister, A. V. Canadian clinical guidelines on social isolation and loneliness in older adults. Canadian Geriatrics Journal, 27(4). https://doi.org/10.5770/cgj.27.772

View the article here: https://cgjonline.ca/index.php/cgj/article/view/772

Visual processing deficits arising in dementia are associated with functional disability. This study aimed to investigate the effects of the built environment, such as lighting and route, on mobility and navigation in people with dementia-related visual loss to inform dementia-friendly environmental design. 

Carton, A.M., Frost, C., Poole, T., Yang, B., McCarthy, I.D., Suzuki, T., Holloway, C., Serougne, R., Boampong, D., Sullivan, M.P., et al. Effects of Route Complexity and Lighting on Route Following in Alzheimer’s Disease and Posterior Cortical Atrophy. Brain Sci. 2024, 14, 1217. https://doi.org/10.3390/brainsci14121217 

View the article here: https://doi.org/10.3390/brainsci14121217

In this article we describe the development, co-production, field testing, and evaluation plan for videoconferencing support groups tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young onset Alzheimer’s disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia.

Waddington, C., Harding, E., Brotherhood, E.V., Davies Abbott, I., Barker, S., Camic, P.M., Ezeofor, V., Gardner, H., Grillo, A., Hardy, C., Hoare, Z., McKee-Jackson, R., Moore, K., O’Hara, T., Roberts, J., Rossi-Harries, S., Suarez Gonzalez, A., Sullivan, M.P., Tutor Edwards, R., Van Der Byl Williams, M., Walton, J., Willoughby, A., Windle, G., Winrow, E., Wood, O., Zimmermann, N., Crutch, S.J. and Stott, J. (2022) The development of videoconference-based support for people living with rare dementias and their carers: Protocol for a 3-phase support group evaluation. JMIR Research Protocols, 11 (6), e35376. doi: 10.2196/35376

View the article here: https://www.researchprotocols.org/2022/7/e35376

The use of poetry in research to develop an understanding of living with dementia is relatively uncommon. In this paper we describe how it was used in the Rare Dementia Support Impact Study.  The description is provided to inform other researchers in the field of dementia on how they may use poetry as an accessible method for knowledge development. The collection of poetry There Is So Much I Could Say was an output emerged this work.

Camic, P., Harding, E., Sullivan, M.P., Grillo, A., McKee-Jackson, R., Wilson, L., Zimmermann, N., Brotherhood, E.V. and Crutch S.J. (2022) Developing poetry as a research methodology with rarer forms of dementia: Four research protocols. International Methods of Qualitative Methods, 21, 1-9. doi: 10.1177/16094069221081377

View the article here: https://journals.library.ualberta.ca/ijqm/index.php/IJQM/issue/archive

This article is written for a journal that is accessed by dementia care practitioners. In this paper we review how peers may be used in the delivery of support for people living with rare or young onset dementia. We also draw attention to the need for a more in-depth understanding of how peers contribute alongside other forms of support.

Grillo, A., Sullivan, M.P., Williams, V. and McKee-Jackson, R. (2021) Tailored peer support in rare dementia care. Journal of Dementia Care, 29 (2), 26-28.

The emphasis of dementia research and services is changing to living as well as possible, which can be influenced by factors such as resilience, which is the ability to adapt to and manage sources of stress to facilitate the ability to “bounce back” in the face of challenges. This paper reviews different scales to measure resilience in people living with dementia and their caregivers. 

Windle, G., MacLeod, C., Algar-Skaife, K., Stott, J., Waddington, C., Camic, P. M., Sullivan, M.P., Brotherhood, E. and Crutch, S. (2022). A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers. BMC Medical Research Methodology, 22(298). doi:10.1186/s12874-022-01747-x  

View the article here: https://doi.org/10.1186/s12874-022-01747-x 

Quality of life and activity engagement are public health priorities, but the experiences of those with rare dementias are not well-known. We explored and compared differences in activity engagement for people with memory-led Alzheimer’s disease and posterior cortical atrophy in their everyday environment.  

We learned that, in addition to individual and contextual variation, there are differences between individuals with Alzheimer’s disease and posterior cortical atrophy in regard to their everyday activities, seemingly influenced by the symptoms of their respective disease. Despite this, all participants demonstrated resilience and ingenuity. 

Harding, E., Sullivan, M.P., Camic, P. M., Yong, K., Stott, J. and Crutch, S. J. (2024). Exploring experiential differences in everyday activities: A focused ethnographic study in the homes of people living with memory-led Alzheimer's disease and posterior cortical atrophy. Journal of Aging Studies, 69. doi:10.1016/j.jaging.2024.101226 

View the article here: https://www.sciencedirect.com/science/article/pii/S0890406524000215?via%3Dihub

We explored support processes and behaviours that occur in online peer support groups for family caregivers of people living with rare dementia. We discovered that many social support behaviours occurred during the support group sessions, including informational, emotional, esteem, tangible, experiential and community support. This research illuminates the challenges unique to caregivers of people living with rare dementia, and the need for tailored services that acknowledge the expertise of carers. 

Harding, E., Rossi-Harries, S., Alterkawi, S., Waddington, C., Grillo, A., Wood, O., Brotherhood, E. V., Windlec, G., Sullivan, M.P., Camic, P. M., Stott, J. and Crutch, S. J. (2023). ‘The oxygen of shared experience’: Exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias. Aging & Mental Health, 27(10). doi:10.1080/13607863.2023.2194848 

View the article here: https://journals-scholarsportal-info.roxy.nipissingu.ca/details/13607863/v27i0010/1912_ooseespwnaid.xml

Rare dementia awareness in dementia care and support communities is limited, causing challenges in obtaining a diagnosis and receiving care and support. This study aimed to explore how rare dementia is situated in dementia care and support communities by examining public documents and conducting surveys with professionals, as part of a larger study exploring various supports for people living with rare dementia. We found both limitations of current support systems as well as potential pathways to more tailored support to create social spaces and care for people living with rare dementia. 

Sullivan, M.P., Camic, P. M., Harding, E., Stott, J., Windle, G., Brotherhood, E. V., Grillo, A. and Crutch, S. J. (2023). Situating support for people living with rarer forms of dementia. BMC Geriatrics, 23(627). doi:10.1186/s12877-023-04268-4 

View the article here: https://doi.org/10.1186/s12877-023-04268-4 

There is limited research about resilience and dementia to influence services provided to those living with dementia. We reviewed existing literature and conducted interviews to explore the lived experience of people with dementia. We found that in the day-to-day challenges of dementia, people are not “bouncing back” but are managing and adapting to stress. Resilience may be supported through practical life adaptations, continuing and pursuing relationships and hobbies, education, and strength-based support from health care providers. 

Windle, G., Roberts, J., MacLeod, C., Algar-Skaife, K., Sullivan, M.P., Brotherhood, E., Jones, C. H. and Stott, J. (2023). ‘I have never bounced back’: Resilience and living with dementia. Aging & Mental Health, 27(12). doi:10.1080/13607863.2023.2196248  

View the article here: https://doi.org/10.1080/13607863.2023.2196248  

This study explored the meaning of support to those living with rare dementia using poetry. Results explored complex, dynamic and relational aspects of how in-person support groups provide a necessary form of connection for people living with rare dementia. 

Camic, P. C., Harding, E., Rossi-Harries, S., Hayes, O. S., Sullivan, M. P., Wilson, L., Zimmermann, N., McKee-Jackson, R., Stott, J., Fox, N. C., et al. "A torch, a rope, a belly laugh": Engaging with the multiple voices of support groups for people living with rare dementia. Frontiers in Dementia. doi:10.3389/frdem.2024.1488025

View the article here: https://www.frontiersin.org/journals/dementia/articles/10.3389/frdem.2024.1488025/full

In this article for practitioners, we discuss the support needs and care preferences for people living with a rare or young onset dementia in a rural or remote area.

Windle, G., Roberts, J. and Sullivan, M.P. (2021) Rare dementia support in rural and remote areas. Journal of Dementia Care, 29 (1), 22-24.

How can younger people living with a rare dementia be better supported?  The 5-year Rare Dementia Support Impact Study aimed to explore this question using a variety of methods. In this paper we set out and describe the different work packages to develop understanding of multi-component support for people affected by rare or young onset dementia.

Brotherhood, E., Stott, J., Windle, G., Barker, S., Camic, P., Caufield, M., Culley, S., Ezeofor, V., Harding, E., Hoare, Z., Mckee-Jackson, R., Roberts, J.; Sharp, R., Suarez-Gonzalez, A., Sullivan, M.P., Tudor-Edwards, R., Waddington, C., Walton, J., Winrow, E., and Crutch, S. (2019) Protocol for the Rare Dementia Support Impact Study: RDS Impact. International Journal of Geriatric Psychiatry, 35 (8). doi.org/10.1002/gps.5253

View the article here: https://onlinelibrary-wiley-com.roxy.nipissingu.ca/doi/full/10.1002/gps.5253

We undertook interviews with 20 people living with posterior cortical atrophy and their family care partners. Three major themes emerged from the analysis of the interviews including: (1) the diagnostic journey: mostly an unsettling and convoluted process, owing to the early age of onset, rarity and atypical symptom profile of PCA. (2) Interactions with the physical environment: profound difficulties with functional and leisure activities were usually compensated for with adaptations maximising familiarity or simplicity. (3) Implications within the psychosocial environment: symptoms impacted individuals’ sense of independence and identity and required reallocations of roles and responsibilities.

Ongoing uncertainties and the progressive nature of PCA caused most dyads to take a ‘one day at a time’ approach to coping. Relatively well-preserved insight and memory were a benefit and burden, as individuals shared the illness experience with family members and also compared their current situation to pre-diagnosis. We concluded that the provision of tailored information about cortical visual problems and associated functional difficulties, time-sensitive environmental adaptations to help those with PCA to identify what and where things are and psychosocial interventions for the marital/family unit as a whole would be useful to improve both functional status and psychological well-being.

Harding, E., Sullivan, M.P., Woodbridge, R., Yong, K.X.X., McIntyre, A., Gilhooly, M.L., Gilhooly, K.J., and Crutch, S.J. (2018) ‘Because my brain isn’t as active as it should be, my eyes don’t always see’: a qualitative exploration of the stress process for those living with posterior cortical atrophy. BMJ Open; 8:e018663. doi:10.1136/bmjopen-2017-01866

View the article here: https://bmjopen.bmj.com/content/8/2/e018663

There is a lack of knowledge to help us understand what resilience means when someone is living with dementia. This paper developed a theoretical model to inform healthcare practices and service development for people affected by dementia. It emphasizes the importance of both strengths-based and tailored approaches to support to help people achieve resilience. The authors call this ‘resilience practice’. 

Windle, G., Roberts, J., MacLeod, C., Algar-Skaife, K., Sullivan, M. P., Brotherhood, E., Jones, C. H., & Stott, J. (2023). 'I have never bounced back': resilience and living with dementia. Aging & Mental Health, 1–13. Advance online publication. doi:10.1080/13607863.2023.2196248 

View the article here: https://journals-scholarsportal-info.roxy.nipissingu.ca/details/13607863/v27i0012/2355_hnbbralwd.xml

Rural areas can create several obstacles more those living with dementia. There is typically less access to support or there are certain costs associated with accessing these supports/traveling to them. This prevents a barrier for many people who are seeking aid. This paper reviews the personal experiences of those living with dementia and their carers in rural areas. 

Roberts, J.R., Windle, G., Story, A., Brotherhood E., Camic, P.M., Crutch, S.J., Stott, J., Sullivan, M.P. and Grillo, A. (2023) Dementia in rural settings: A scoping review exploring the personal experiences of people with dementia and their carers. Ageing & Society, 1-30. Advance online publication. doi:10.1017/S0144686X2300003X

View the article here: https://www.proquest.com/results/BA7DBC14A823447EPQ/1?accountid=12792

It is often difficult to obtain a diagnosis and relevant support for people living with rare dementia, which can affect relationships, quality of life and well-being. This study aimed to understand this experience from the start of symptoms to obtaining a diagnosis and support, up until the present. Line drawings and verbal interviews are one way to collect these stories, and in this publication, these methodologies are explored. 

Camic, P. M., Rossi-Harries, S., Harding, E., Harrison, C. R., Sullivan, M.P., Grillo, A., Brotherhood, E. V. and Crutch, S. J. (2023). Talking lines: A research protocol integrating verbal and visual narratives to understand the experiences of people affected by rarer forms of dementia. International Journal of Qualitative Methods, 22(1-10). doi:10.1177/16094069231176195 

View the article here: https://journals.sagepub.com/doi/10.1177/16094069231176195

How can caregiver self-efficacy and well-being be improved? This protocol outlines a study that aims to assess the feasibility of an online educational programme for caregivers of people living with various forms of rare dementia called the Better Living with Non-memory-led Dementia programme. Educational programmes have the potential to improve self-efficacy, competency and well-being of caregivers, and contribute to equitable access to services despite geographical location. 

Suarez-Gonzalez, A., John, A., Brotherhood, E., Camic, P. M., McKee-Jackson, R., Melville, M., Sullivan, M.P., Tudor-Edwards, R., Windle, G., Crutch, S., Hoare, Z. and Stott, J. ‘Better living with non‑memory‑led dementia’: Protocol for a feasibility randomised controlled trial of a web‑based caregiver educational programme. Pilot and Feasibility Studies, 9(172). doi:10.1186/s40814-023-01403-1 

View the article here: https://doi.org/10.1186/s40814-023-01403-1  

This study investigated how research poetry can be used to understand the experiences of those living with rare dementia, and how poetry can communicate these experiences to health care providers. We discovered that poems conveyed a shared narrative of individuals’ lived experiences, and that this was a valuable experience that allowed for reflection, curiosity, exploration and understanding, as well as critical thinking and empathy. This provided us with information on how healthcare education and training can be influenced by poetry. 

Camic, P. M., Sullivan, M.P., Harding, E., Gould, M., Wilson, L., Rossi-Harries, S., Grillo, A., McKee-Jackson, R., Cox, S. M., Stott, J., Brotherhood, E. V., Windle, G. and Crutch, S. J. (2024). ‘Misdiagnosed and misunderstood’: Insights into rarer forms of dementia through a stepwise approach to co-constructed research poetry. Healthcare, 12(485). doi:10.3390/ healthcare12040485  

View the article here: https://doi.org/10.3390/ healthcare12040485 

Many people with rare dementia experience challenges accessing a diagnosis and support, which can affect multiple areas of their lives and well-being. This study uses an arts-based narrative approach to explore these challenges and experiences. 

Rossi‑Harries, S., Harrison, C. R., Camic, P. M., Sullivan, M.P., Grillo, A., Crutch, S. J. and Harding, E. (2024). ‘Talking lines’: The stories of diagnosis and support as told by those with lived experience of rare forms of dementia. BMC Geriatrics, 24(504). doi:10.1186/s12877-024-04988-1   

View the article here: https://doi.org/10.1186/s12877-024-04988-1 

Rural areas pose numerous barriers to support and resources for people living with dementia, which puts more reliance and responsibility on informal caregivers. We explored the experiences of caregivers and people living with dementia that live in rural areas by reviewing existing literature to explore the advantages, challenges, and recommendations of living in a rural area with dementia. The information yielded from this review provided insight into some of the opportunities, challenges, and needs of those living with dementia in rural settings. 

Roberts, J. R., Windle, G., Story, A., Brotherhood, E. V., Camic, P. M., Crutch, S. J., Stott, J., Sullivan, M.P. and Grillo, A. (2022). Dementia in rural settings: a scoping review exploring the personal experiences of people with dementia and their carers. Ageing & Society. doi:10.1017/S0144686X2300003X  

View the article here: https://www-proquest-com.roxy.nipissingu.ca/intermediateredirectforezproxy