The caregiving phenomenon and caregiver participation in dementia.
caregiver
dementia
healthcare organisation
informal care
participation
patient rights
social care
Journal
Scandinavian journal of caring sciences
ISSN: 1471-6712
Titre abrégé: Scand J Caring Sci
Pays: Sweden
ID NLM: 8804206
Informations de publication
Date de publication:
Jun 2019
Jun 2019
Historique:
received:
23
08
2018
accepted:
27
09
2018
pubmed:
30
11
2018
medline:
7
1
2020
entrez:
30
11
2018
Statut:
ppublish
Résumé
Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.
Sections du résumé
BACKGROUND
BACKGROUND
Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation.
METHODS
METHODS
In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed.
DISCUSSION
CONCLUSIONS
The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia.
CONCLUSION
CONCLUSIONS
Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.
Identifiants
pubmed: 30488971
doi: 10.1111/scs.12627
pmc: PMC7432177
doi:
Types de publication
Journal Article
Review
Langues
eng
Pagination
255-265Subventions
Organisme : Swedish Order of Saint John/Johanniterorden
Organisme : Swedish Society for Medical Research
Organisme : Swedish Research Council
Organisme : Swedish Associations of Local Authorities and Regions and FORTE
Organisme : Swedish Research Council for Health, Working Life and Welfare
ID : 2017-01646
Informations de copyright
© 2018 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
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