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The caregiving phenomenon and caregiver participation in dementia

Garcia-Ptacek, Sara; Dahlrup, Beth LU ; Edlund, Ann Katrin; Wijk, Helle LU and Eriksdotter, Maria (2018) In Scandinavian Journal of Caring Sciences
Abstract

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... (More)

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: 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: 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: 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.

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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
caregiver, dementia, healthcare organisation, informal care, participation, patient rights, social care
in
Scandinavian Journal of Caring Sciences
publisher
Wiley-Blackwell
external identifiers
  • scopus:85057775742
ISSN
0283-9318
DOI
10.1111/scs.12627
language
English
LU publication?
yes
id
3a4e1d21-2318-4d3f-a4e6-ad67dc9ac549
date added to LUP
2019-01-08 10:47:55
date last changed
2019-02-20 11:41:59
@article{3a4e1d21-2318-4d3f-a4e6-ad67dc9ac549,
  abstract     = {<p>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: 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: 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: 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.</p>},
  author       = {Garcia-Ptacek, Sara and Dahlrup, Beth and Edlund, Ann Katrin and Wijk, Helle and Eriksdotter, Maria},
  issn         = {0283-9318},
  keyword      = {caregiver,dementia,healthcare organisation,informal care,participation,patient rights,social care},
  language     = {eng},
  month        = {11},
  publisher    = {Wiley-Blackwell},
  series       = {Scandinavian Journal of Caring Sciences},
  title        = {The caregiving phenomenon and caregiver participation in dementia},
  url          = {http://dx.doi.org/10.1111/scs.12627},
  year         = {2018},
}