Dementia care navigation: A systematic review on different service types and their prevalence

Giebel, Clarissa; Reilly, Siobhán; Gabbay, Mark; Dickinson, J. Richard; Tetlow, Hilary; Hogan, H. Wayne; Griffiths, Alys Wyn; Cooper, Claudia

doi:10.1002/gps.5977

Cited by 5 publications

(2 citation statements)

References 42 publications

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“…Results of the current study indicate that these strategies to counter barriers to service accessibility and use are addressed by having FLC as integral members of rural memory clinics. Our findings are consistent with the recommendation that improving access to services requires dementia care navigators to be well integrated into health and social care systems [ 28 ].…”

Section: Discussionsupporting

confidence: 91%

“…Recent reviews of dementia navigation [ 28 , 29 ] have identified some positive outcomes related to service use but agree that there is not enough evidence to make substantial conclusions. Giebel et al [ 28 ] conclude that there is mixed evidence on effectiveness of care navigation, despite studies showing sizable benefits for some outcomes, and stress the need for more evaluation of impact on care utilization and in countries outside the USA which does not have universal health coverage. Kokorelias et al [ 29 ] concluded there is strong evidence for care navigation in delaying institutionalization and outcomes such as caregiver mastery, but weak evidence for health service use and functional independence.…”

Section: Introductionmentioning

confidence: 99%

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Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics

Morgan,

Kosteniuk,

Bayly

2024

BMC Health Serv Res

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Background Primary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts. Methods This study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts. Results Three key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available. Conclusions FLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.

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Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics

Morgan,

Kosteniuk,

Bayly

2024

BMC Health Serv Res

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The Right to Rehabilitation for People With Dementia: A Codesign Approach to Barriers and Solutions

Layton,

Devanny,

Hill

et al. 2024

Health Expectations

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IntroductionPeople with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to dementia rehabilitation and (2) identify solutions that improve access to rehabilitation.MethodsPeople living with dementia (n = 5) and care partners (n = 8) and health professionals (n = 13) were recruited nationally. Experience‐based codesign across three virtual workshops was used to understand barriers and design solutions to improve access to rehabilitation treatments. Socio‐ecological analyses, using the Levesque Access to Health care framework, were applied to findings regarding barriers and to aid selection of solutions.ResultsThere was high attendance (92.3%) across the three workshops. Barriers were identified at a user level (including lack of knowledge, transport, cost and difficulty navigating the health, aged care and disability sectors) and health service level (including health professional low dementia knowledge and negative attitudes, inequitable funding models and non‐existent or fragmented services). Solutions focused on widespread dementia education and training, including ensuring that people with dementia and their care partners know about rehabilitation therapies and that health professionals, aged care and disability co‐ordinators know how to refer to and deliver rehabilitation interventions. Dementia care navigators, changes to Australia's public funding models and specific dementia rehabilitation programmes were also recommended.ConclusionsBarriers to accessing rehabilitation for people with dementia exist at multiple levels and will require a whole‐community and systems approach to ensure change.Patient or Public ContributionPeople with living experience (preferred term by those involved) were involved at two levels within this research. A Chief Investigator living with dementia was involved in the design of the study and writing of the manuscript. People with living experience, care partners and service providers were participants in the codesign process to identify barriers and design potential solutions.

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Competency development for a volunteer navigation program to support caregivers of people living with dementia: A modified e-Delphi method

Huggins,

Puurveen,

Pesut

et al. 2023

Dementia

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Caregivers of people living with dementia are pillars of the care community. Providing them with adequate support throughout their caregiving journey is essential to their quality of life and may also contribute to improving the care of people living with dementia. Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging) is a volunteer-led navigation program that provides support to older adults with life-limiting illnesses who are living in the community. However, Nav-CARE does not provide support directly to caregivers of people living with dementia. To adapt Nav-CARE to support caregivers, we needed to establish caregivers’ needs and the competencies volunteer navigators should be trained in to support caregivers to meet these needs. To do so, a modified e-Delphi method was utilized, which consisted of administering three sequential questionnaires to a panel of 35 individuals with expertise in a variety of dementia related domains. Through this, two final lists of 46 caregivers’ needs and 41 volunteer competencies were established to inform the development of volunteer navigator training curriculum. Findings suggest that trained volunteer navigators may be able to support caregivers of people living with dementia throughout the disease trajectory and can be used to inform the development of future dementia navigation programs.

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Dementia care navigation: A systematic review on different service types and their prevalence

Cited by 5 publications

References 42 publications

Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics

Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics

The Right to Rehabilitation for People With Dementia: A Codesign Approach to Barriers and Solutions

Competency development for a volunteer navigation program to support caregivers of people living with dementia: A modified e-Delphi method

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