Drawing on narrative accounts of dementia in education and care

2018 ◽  
pp. 188-200
Author(s):  
Joyce Lamerichs ◽  
Manna Alma
Keyword(s):  
Dementia Care ◽  
Vocational Education And Training ◽  
Video Clips ◽  
People With Dementia ◽  
Metaphoric Language ◽  
Moderate Dementia ◽  
Education And Care ◽  
Course Material ◽  
Informal Carers

This chapter shows how a selection of narrative videotaped accounts of people with dementia and their informal carers are used to develop course material on dementia care for students in Dutch secondary Vocational Education and Training (VET). It provides illustrative segments of two pilot lessons on dementia care to show how the narrative clips stimulate students’ empathic response, invite reflection on their own practices as professional carers, and demonstrate the strength of metaphoric language available in the clips as a cue for follow-up discussions. Although further research is needed, working with narrative video clips in which people with dementia and their informal carers recount what it means to live with dementia seems a promising educational tool. It proved particularly well-suited to provide opportunities to learn from people who experience mild/moderate dementia, and what it means to live with this condition.

scholarly journals Improving the care of people with dementia in general hospitals: evaluation of a whole-system train-the-trainer model

2016 ◽  
Vol 29 (4) ◽  
pp. 605-614 ◽  
Author(s):  
Elizabeth L. Sampson ◽  
Victoria Vickerstaff ◽  
Stephanie Lietz ◽  
Martin Orrell
Keyword(s):  
Dementia Care ◽  
T Test ◽  
Organizational Level ◽  
Train The Trainer ◽  
Sense Of Competence ◽  
Information Leaflets ◽  
People With Dementia ◽  
Paired T Test

ABSTRACTBackground:There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care.Methods:A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data were collected at (a) individual level: “Sense of Competence in Dementia Care” (SCID), (b) ward level: Person Interaction and Environment (PIE) observations, (c) organization level: use of specific tools, i.e. “This Is Me,” (d) systems level: numbers and types of staff trained per trust. Results were analyzed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations.Results:The number of staff trained per trust ranged from 67 to 650 (total 2,020). A total of 1,688 (85%) baseline questionnaires and 456 (27%) three month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p < 0.001). All sub-scales showed a small increase in competence, the largest being for “building relationships.” Organizational level data suggested increased use of carer's passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales, and pathways. PIE observations demonstrated improved staff–patient interactions but little change in hospital environments.Conclusions:There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person-centered tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia.

Norwegian remote and rural dementia care

2020 ◽  
pp. 57-72
Author(s):  
Oyvind Kirkevold ◽  
Kari Midtbo Kristiansen
Keyword(s):  
Dementia Care ◽  
Rural People ◽  
Medical Practitioners ◽  
Rural Workforce ◽  
People With Dementia ◽  
District Nurses ◽  
Rural Places ◽  
General Medical Practitioners ◽  
Home Helpers

A fifth of Norwegians (one million people) live rurally and approximately 80,000 rural people currently live with dementia. Diagnosis and follow-up support for people with dementia takes place in municipalities (local government areas). Most municipalities have a memory team that assists general medical practitioners in assessing dementia. In-home care is from district nurses and home helpers employed directly, or through contracts, by the municipalities. An early adopter of national dementia planning, Norway has instituted and adapted several innovative approaches that help to contextualise care to rural places, including service collaborations, joint upskilling and developing local workers that focus on people with dementia. While rural Norwegians with dementia experience many challenges shared internationally, such as long distances to access specialists, rural people tend to benefit from ‘everybody knows everybody’ communities and a relatively stable rural workforce.

Met and unmet care needs of older people with dementia living at home: Personal and informal carers’ perspectives

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 1963-1975 ◽  
Author(s):  
Justyna Mazurek ◽  
Dorota Szcześniak ◽  
Katarzyna Urbańska ◽  
Rose-Marie Dröes ◽  
Joanna Rymaszewska
Keyword(s):  
Older People ◽  
Daily Living ◽  
Multidisciplinary Treatment ◽  
Holistic Approach ◽  
Care Needs ◽  
The People ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Informal Carers ◽  
At Home

In Poland, there are few reports of the holistic approach to caring for older people with dementia. The aim of this study was to assess the needs of people with dementia living at home. This was done by evaluating the perspective of people with dementia themselves and that of their carers. The study included 47 people diagnosed with mild to moderate dementia and 41 informal carers, all living in Wroclaw in Poland, involved in the MeetingDem project. The needs were assessed using the CANE. Other scales used were: the MMSE, the GDS and the QOL-AD. The carers reported significantly more needs, both met and unmet, than the people with dementia themselves. The most frequent reported unmet needs both by the people with dementia and their carers included activities of daily living, psychological distress and the need for company. Based on this study’s findings, tailored multidisciplinary treatment, adjusted to their needs and wishes, can be offered thus creating integrated and individualised support.

Characteristics of people with dementia lost to follow‐up from a dementia care center

2021 ◽  
Author(s):  
Nicole D. Boyd ◽  
Georges Naasan ◽  
Krista L. Harrison ◽  
Sarah B. Garrett ◽  
Talita D'Aguiar Rosa ◽  
...  
Keyword(s):  
Care Center ◽  
Dementia Care ◽  
People With Dementia ◽  
Lost To Follow Up

Wandering in Dementia: A Longitudinal Study

2001 ◽  
Vol 13 (2) ◽  
pp. 137-147 ◽  
Author(s):  
Tony Hope ◽  
Janet Keene ◽  
Rupert H. McShane ◽  
Christopher G. Fairburn ◽  
Kathy Gedling ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Cognitive State ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Different Types ◽  
History Of ◽  
Getting Lost ◽  
Dementia Onset ◽  
At Home

Objective: This article analyzes the natural history of wandering behavior throughout the course of dementia. Design: Prospective, 10-year, longitudinal study of wandering behavior in dementia, with autopsy follow-up. Setting: Participants with dementia, living at home with a carer. All lived in Oxfordshire, UK. Participants: Eighty-six people with dementia who were living at home with a carer and who were able to walk unaided at entry to study. Measures: At 4-monthly intervals, the carers were interviewed using the Present Behavioural Examination to assess wandering behavior were distinguished. Results: Changes in wandering behavior were not generally related to gender, age, or time since onset of dementia. Onset of different types of wandering behavior showed some relationship with cognitive state. Various forms of increased walking first appeared during moderate dementia, each type typically persisting for 1 to 2 years. Late dementia was characterized by decreased walking and immobility. Conclusions: Wandering behavior in dementia can cause great problems for carers. There are different causes for such changes, some of which are related to cognitive ability, for example increased confusion results in ineffectual “pottering” and getting lost. Increased walking at night corresponds with disruption of diurnal rhythm.

Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care

2012 ◽  
Vol 33 (5) ◽  
pp. 888-907 ◽  
Author(s):  
VALERIE EGDELL
Keyword(s):  
Nursing Homes ◽  
Qualitative Data ◽  
Dementia Care ◽  
Health Geography ◽  
Care Giving ◽  
Cultural Expectations ◽  
People With Dementia ◽  
Informal Carers ◽  
Socially Situated ◽  
Research And Policy

ABSTRACTThis paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature.

scholarly journals “Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands

2021 ◽  
Vol 18 (22) ◽  
pp. 12233
Author(s):  
Clarissa Giebel ◽  
Sarah Robertson ◽  
Audrey Beaulen ◽  
Sandra Zwakhalen ◽  
Dawn Allen ◽  
...  
Keyword(s):  
The Netherlands ◽  
Thematic Analysis ◽  
Health Care Professionals ◽  
Systems Of Care ◽  
Dementia Care ◽  
Service Usage ◽  
Care Services ◽  
People With Dementia ◽  
Informal Carers ◽  
The Uk

Background: Accessing post-diagnostic care can be difficult for people with dementia and their informal carers. Little is known, however, about the determinants of barriers to access, and how these might vary between countries. The aim of this study was to explore potential inequalities in access to formal dementia care services between England and the Netherlands, specifically from more disadvantaged areas. Methods: This was a mixed-methods study, involving semi-structured qualitative interviews and a carer questionnaire. People with dementia and informal carers were recruited by clinicians. The postal survey was co-produced with people with dementia, informal carers, and health care professionals. The survey asked carers about their own and their relatives with dementia’s, social support service usage and financing; as well as how they were made aware of services and whether they required more support. Qualitative transcripts were analysed by two researchers in each country using thematic analysis. Results: A total of 103 carer questionnaires were received by post and 13 interviews were conducted with people with dementia and family carers between January 2020 and April 2020. Many services were accessed via self-funding. Thematic analysis generated five core themes: Health literacy; Having faith and lack of faith; Service suitability; Structural issues surrounding service provision; and Financing care. One major difference between both country’s systems of care were the case manager and network support which people with dementia and carers benefitted from in the Netherlands, which was rarely the case in the UK. Conclusions: People with dementia and informal carers need to be supported better in accessing formal dementia care services in both the UK and the Netherlands, whilst some learning can be taken to improve access.

scholarly journals Dementia Care: Intersecting Informal Family Care and Formal Care Systems

2014 ◽  
Vol 2014 ◽  
pp. 1-9 ◽  
Author(s):  
Prabhjot Singh ◽  
Rafat Hussain ◽  
Adeel Khan ◽  
Lyn Irwin ◽  
Roslyn Foskey
Keyword(s):  
Family Member ◽  
Family Care ◽  
Well Being ◽  
Dementia Care ◽  
Formal Care ◽  
Policy And Practice ◽  
People With Dementia ◽  
Physical Burden ◽  
Formal Services ◽  
Informal Carers

Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

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