From Beginning to End: Perspectives of the Dementia Journey in Northern Ontario

Gregorio, Deanna Di; Ferguson, Shannon; Wiersma, Elaine

doi:10.1017/s0714980814000531

Cited by 13 publications

(33 citation statements)

References 29 publications

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“…Numerous education and support needs were identified, with a general need for greater information or support for persons with dementia and their caregivers frequently mentioned in qualitative work (see Table 4). The need for education about available resources and services was often highlighted by participants, including service/health providers (Burton, O'Connell, & Morgan, 2016;Coogle, 2002;Di Gregorio, Ferguson, & Wiersma, 2015;Edelman et al, 2006;Forbes et al, 2012;Forbes et al, 2006;Gurayah, 2015;Glueckauf et al, 2005;Innes, Szymczynska, & Stark, 2014;O'Reilly & Strong, 1997;Smith et al, 2011). When needs were ranked by importance or frequency, the top reported needs included information on dementia in general, treatments, coping with responsive behaviours and challenging symptoms, meaningful activities for the person with dementia, resources/supports, and caregiving and family dynamics (Buettner & Langrish, 2001;Coogle, 2002;Edelman et al, 2006).…”

Section: Education and Support Service Needs Availability And Usementioning

confidence: 99%

“…Poor awareness of available or eligible services was described within six articles, spanning Canada, the United States, and Scotland (Di Gregorio et al, 2015;Forbes et al, 2006;Glueckauf et al, 2005;Herron et al, 2016;Innes et al, 2014;Morgan et al, 2002). Di Gregorio et al (2015) concluded that a lack of awareness regarding services was common, and that there were limited presence and visibility of organizations providing dementia-related education and support in rural northern communities. Service providers reported higher visibility of their dementia-related support and education services in urban compared to rural areas, with lack of knowledge as a barrier to use (Herron et al 2016).…”

Section: Knowledge Of Servicesmentioning

confidence: 99%

“…The most frequently reported were geographic distance and transportation, identified in 15 studies across Canada, Scotland, Tanzania, and Australia (Andrews, Morgan, & Stewart, 2010;Clancy, 2015;Di Gregorio et al, 2015;Forbes et al, 2012;Herron et al, 2016;Innes et al, 2005;Innes et al, 2006;Innes et al, 2003;Innes et al, 2014;Morgan et al, 2002;Morgan et al, 2015;O'Reilly & Strong, 1997;Paddick et al, 2017;Plunkett & Chen, 2016;Smith et al, 2011). Services were not always locally available; therefore, distance and long travel times made access difficult (Di Gregorio et al, 2015;Herron et al, 2016;Innes et al, 2005;Innes et al, 2006;Innes et al, 2003;Innes et al, 2014;Morgan et al, 2002;Plunkett & Chen, 2016;Smith et al, 2011). Transportation was a large part of this challenge, reported by Innes et al (2005) as the service gap most frequently identified by people with dementia and their caregivers.…”

Section: Practicality and Resourcesmentioning

confidence: 99%

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Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

et al. 2020

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This scoping review mapped and synthesized published literature related to education and support services for individuals with dementia and their caregivers living rurally. Specifically, we investigated education and support service needs, availability and use of services, barriers to service access and use, and solutions to these barriers. Empirical, English-language articles (2,381) were identified within MEDLINE, CINAHL, PSYCINFO, and EMBASE. Articles were screened according to Arksey and O’Malley’s (2005) five-stage scoping review methodology and the recommendations of Levac et al. (2010). Findings suggest limited availability of rural dementia-related support and education services, particularly respite care and day programs. Service use varied across studies, with barriers including low knowledge regarding services, practicality, and resource issues (e.g., transportation, financial), values and beliefs, stigma, and negative perceptions of services. Solutions included tailored and person-centred services, technological service provision, accessibility assistance, inter-organization collaboration, education regarding services, and having a “point of entry” to service use.

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Section: Education and Support Service Needs Availability And Usementioning

confidence: 99%

Section: Knowledge Of Servicesmentioning

confidence: 99%

Section: Practicality and Resourcesmentioning

confidence: 99%

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Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

et al. 2020

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“…Fragmented service systems havebeen found to have a negative impact on rural carers who seek to access and navigate services for people with dementia (Orpin, Stirling, Hetherington & Robinson, 2014;Peel & Harding, 2014;Morgan et al, 2014;Di Gregorio, Ferguson & Wiersma, 2015). Barriers to accessing services include health professionals and carers' lack of awareness of services (Di Gregorio et al, 2015;Hansen, Robinson, Mudge & Crack, 2005) and lack of communication between professionals and with carers (Hansen et al, 2005).…”

Section: Introduction (5304)mentioning

confidence: 99%

“…Barriers to accessing services include health professionals and carers' lack of awareness of services (Di Gregorio et al, 2015;Hansen, Robinson, Mudge & Crack, 2005) and lack of communication between professionals and with carers (Hansen et al, 2005).…”

Section: Introduction (5304)mentioning

confidence: 99%

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Dawson

Gerace

Muir‐Cochrane

et al. 2015

Aging & Mental Health

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(250) ObjectivesMental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems. MethodsThe Pathways Interview Schedule was used to facilitate nine in-depth care journey interviews with eleven carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services.Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers. ResultsCarers had a significant role in navigating services and operationalising care for their relative.Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws. ConclusionCarers should be considered key partners in mental health care planning that crosses service sectors. For this to occur changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.

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Dementia in rural settings: a scoping review exploring the personal experiences of people with dementia and their carers

Roberts

Windle²,

Story³

et al. 2023

Ageing and Society

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Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities.

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From Beginning to End: Perspectives of the Dementia Journey in Northern Ontario

Cited by 13 publications

References 29 publications

Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Dementia in rural settings: a scoping review exploring the personal experiences of people with dementia and their carers

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