Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers.
<h4>Introduction</h4>Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite.<h4>Met...
Saved in:
| _version_ | 1849716985362907136 |
|---|---|
| author | Els van Wijngaarden Hugo van der Wedden Zerline Henning Rikke Komen Anne-Mei The |
| author_facet | Els van Wijngaarden Hugo van der Wedden Zerline Henning Rikke Komen Anne-Mei The |
| author_sort | Els van Wijngaarden |
| collection | DOAJ |
| description | <h4>Introduction</h4>Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite.<h4>Methods</h4>This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach.<h4>Results</h4>The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others.<h4>Discussion and conclusion</h4>Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise. |
| format | Article |
| id | doaj-art-bfe8bdb0761f4ceba43c4a92ebcf760e |
| institution | DOAJ |
| issn | 1932-6203 |
| language | English |
| publishDate | 2018-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-bfe8bdb0761f4ceba43c4a92ebcf760e2025-08-20T03:12:49ZengPublic Library of Science (PLoS)PLoS ONE1932-62032018-01-01136e019803410.1371/journal.pone.0198034Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers.Els van WijngaardenHugo van der WeddenZerline HenningRikke KomenAnne-Mei The<h4>Introduction</h4>Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite.<h4>Methods</h4>This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach.<h4>Results</h4>The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others.<h4>Discussion and conclusion</h4>Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.https://storage.googleapis.com/plos-corpus-prod/10.1371/journal.pone.0198034/1/pone.0198034.pdf?X-Goog-Algorithm=GOOG4-RSA-SHA256&X-Goog-Credential=wombat-sa%40plos-prod.iam.gserviceaccount.com%2F20210218%2Fauto%2Fstorage%2Fgoog4_request&X-Goog-Date=20210218T134759Z&X-Goog-Expires=3600&X-Goog-SignedHeaders=host&X-Goog-Signature=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 |
| spellingShingle | Els van Wijngaarden Hugo van der Wedden Zerline Henning Rikke Komen Anne-Mei The Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. PLoS ONE |
| title | Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. |
| title_full | Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. |
| title_fullStr | Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. |
| title_full_unstemmed | Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. |
| title_short | Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. |
| title_sort | entangled in uncertainty the experience of living with dementia from the perspective of family caregivers |
| url | https://storage.googleapis.com/plos-corpus-prod/10.1371/journal.pone.0198034/1/pone.0198034.pdf?X-Goog-Algorithm=GOOG4-RSA-SHA256&X-Goog-Credential=wombat-sa%40plos-prod.iam.gserviceaccount.com%2F20210218%2Fauto%2Fstorage%2Fgoog4_request&X-Goog-Date=20210218T134759Z&X-Goog-Expires=3600&X-Goog-SignedHeaders=host&X-Goog-Signature=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 |
| work_keys_str_mv | AT elsvanwijngaarden entangledinuncertaintytheexperienceoflivingwithdementiafromtheperspectiveoffamilycaregivers AT hugovanderwedden entangledinuncertaintytheexperienceoflivingwithdementiafromtheperspectiveoffamilycaregivers AT zerlinehenning entangledinuncertaintytheexperienceoflivingwithdementiafromtheperspectiveoffamilycaregivers AT rikkekomen entangledinuncertaintytheexperienceoflivingwithdementiafromtheperspectiveoffamilycaregivers AT annemeithe entangledinuncertaintytheexperienceoflivingwithdementiafromtheperspectiveoffamilycaregivers |