Carers: The navigators of the maze of care for people with dementia—A qualitative study

Jamieson, Maggie; Grealish, Laurie; Brown, Jo‐Ann; Draper, Brian

doi:10.1177/1471301214554930

Cited by 24 publications

(88 citation statements)

References 19 publications

(42 reference statements)

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“…14 The utilization of trained dementia care navigators to assist persons living with dementia and their caregivers in accessing dementia supports and services is growing in both for-profit and not-for-profit sectors. 15 Successfully linking needs, avoiding duplication, and filling gaps in services require coordination to address all concerns. Training a workforce to be aware of multiple needs and services and to be able to coordinate and manage that care requires specialized training.…”

Section: Research Topic 3: Care Coordination and Care Managementmentioning

confidence: 99%

“…Care coordination and care management can be achieved through interprofessional collaboration and the development of reciprocal working partnerships between community‐based service providers, clinicians, and all other team members . The utilization of trained dementia care navigators to assist persons living with dementia and their caregivers in accessing dementia supports and services is growing in both for‐profit and not‐for‐profit sectors . Successfully linking needs, avoiding duplication, and filling gaps in services require coordination to address all concerns.…”

Section: Introductionmentioning

confidence: 99%

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Critical Workforce Gaps in Dementia Education and Training

Weiss

Tumosa

Perweiler

et al. 2020

J American Geriatrics Society

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The US Department of Health and Human Services and the Foundation for the National Institutes of Health, through private sector support, sponsored the National Research Summit on Dementia Care: Building Evidence for Services and Supports (Summit) in 2017. Various workgroups were asked to address topics of interest in dementia care and develop recommendations addressing the goals of the Summit. Workforce education and training was identified to be a key issue. As a result, a Workforce Development Workgroup (the Workgroup) was created and addressed two of the Summitʼs goals. The first goal is to improve the quality of care and support provided to persons living with dementia and those who care for them. The second goal is to accelerate the development, evaluation, translation, implementation, and scaling‐up of evidence‐based and evidence‐informed services for persons living with dementia, their families, and caregivers. In this article, the Workgroup identified gaps in educating and training a dementia‐capable workforce. The Workgroup consisted of an interprofessional team with expertise in dementia workforce development from academia, professional organizations, and the federal government. Four recommendations are presented concerning research topics that will advance the education and training of a dementia‐capable workforce, which includes health professions students, faculty, practitioners, direct care workers, persons living with dementia, and those who care for them. J Am Geriatr Soc 68:625–629, 2020

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Section: Research Topic 3: Care Coordination and Care Managementmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Critical Workforce Gaps in Dementia Education and Training

Weiss

Tumosa

Perweiler

et al. 2020

J American Geriatrics Society

View full text Add to dashboard Cite

show abstract

“…Carer dissatisfaction about the care provided to people with dementia in hospital relates to perceived poor care, lack of understanding of the needs of the person with dementia, deterioration in the health and function of the person with dementia, and limited involvement of and communication with carers . Care burden and exhaustion can also be experienced by carers who stay and support the person with dementia when hospitalised …”

Section: Introductionmentioning

confidence: 99%

“They take a lot of pressure off us”: Volunteers reducing staff and family care burden and contributing to quality of care for older patients with cognitive impairment in rural hospitals

2019

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Objectives: 1. Explore the ability of trained volunteers to provide person-centred care focusing on nutrition/hydration support, hearing/visual aids and activities in rural hospitals for older patients with dementia and/or delirium. 2. Explore the impacts and challenges of volunteer care for family carers and hospital staff. Methods: Staff were surveyed about their confidence, stress and satisfaction at 6 months post-implementation. Focus groups with staff and interviews with families explored program successes, challenges and enabling factors. Results: Volunteers integrated themselves into the care team, providing personcentred care, increased safety and quality of care for patients and a reduced burden for staff and families. Key enablers were clear processes for screening, training and supporting volunteers. Key challenges included initial role delineation, staff/ volunteer trust and sustainability. Conclusion: The program is reported by families and staff as being effective in addressing the main barriers to providing person-centred care for older adults with cognitive impairment in rural acute hospitals. K E Y W O R D S delirium, dementia, hospital volunteers, patient-centred care, rural hospitals This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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“…The individuals appointed would assist in providing information about treatment, available research and other quality of life issues (eg financial and legal issues). They would be the first point of contact for all consumers and carers, alleviating some of the burden on GPs and specialists …”

Section: Resultsmentioning

confidence: 99%

Putting the consumer in the driver's seat: A visual journey through the Australian health‐care system as experienced by people living with dementia and their carers

et al. 2019

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Objective: To better understand the individual journeys of people living with dementia and their carers through the Australian health-care system. Methods: Stories were collected from 25 participants, through five face-to-face workshops, across Australia. This produced 18 visual storyboards and a range of opportunities for improvement, which were then synthesised into an aggregated "idealjourney" model. Results: Several issues were identified: long lead times to diagnosis; diverse experiences of treatment and support; and little coordination of care or thought for its impact on the consumer. Information about services, their purpose and eligibility criteria was difficult to obtain, and potential care pathways were largely unexplained.Much of the carer support received was reactive rather than proactive. Conclusions: A better understanding of the current health-care pathway of dementia is essential for the design and delivery of future health-care services. It is vital to include the consumer voice in future research and allocation of health-care resources. K E Y W O R D Scaregivers, critical pathways, delivery of health care, dementia, health services accessibility This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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Carers: The navigators of the maze of care for people with dementia—A qualitative study

Cited by 24 publications

References 19 publications

Critical Workforce Gaps in Dementia Education and Training

Critical Workforce Gaps in Dementia Education and Training

“They take a lot of pressure off us”: Volunteers reducing staff and family care burden and contributing to quality of care for older patients with cognitive impairment in rural hospitals

Putting the consumer in the driver's seat: A visual journey through the Australian health‐care system as experienced by people living with dementia and their carers

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