Care challenges of home health patients living with dementia: a pathway forward with palliative care
Abstract Background Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agenci...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-08-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-023-01247-9 |
| _version_ | 1797555754407821312 |
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| author | Connie S. Cole Ashley Dafoe Caroline K. Tietbohl Sarah R. Jordan Amy G. Huebschmann Hillary D. Lum Christine D. Jones |
| author_facet | Connie S. Cole Ashley Dafoe Caroline K. Tietbohl Sarah R. Jordan Amy G. Huebschmann Hillary D. Lum Christine D. Jones |
| author_sort | Connie S. Cole |
| collection | DOAJ |
| description | Abstract Background Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are frequently under pressure to find effective approaches for improving care delivery and quality. One strategy that has the potential to improve the quality of life and patient satisfaction in HHC for PLWD is the integration of palliative care. Therefore, we sought to understand the experiences and needs of PLWD and their family caregivers specifically focusing on ways that HHC and palliative care may be integrated as part of the care transition from hospital to home, to better support PLWD and their families. Methods We conducted a descriptive qualitative study focusing on the perspectives of patients, caregivers, and healthcare team members about palliative care delivery for patients receiving HHC. Interviews were audio-recorded and professionally transcribed. In this analysis, we specifically report on dementia-related content using an iterative, team-based thematic analysis approach. Results We identified three themes: 1) ’Living in the Whirlwind’ which describes the many competing demands on caregivers time and the associated feeling of loss of control, 2) ’Thinking Ahead’ which describes the importance of thinking beyond the day-to-day tasks to begin planning for the future, and 3) ‘Pathways Forward’ which describes the integration of palliative care into HHC to provide enhanced support for PLWD and their caregivers. Conclusion In this qualitative study, our formative work identified the importance of providing anticipatory guidance (e.g., safety, advance care planning) coupled with emotional and pragmatic care supports (e.g., finding resources, navigating insurance) to sustain caregivers who are struggling with the whirlwind. |
| first_indexed | 2024-03-10T16:52:06Z |
| format | Article |
| id | doaj.art-a51f3ac3c82e4b44a09d435d2b5c03dd |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-03-10T16:52:06Z |
| publishDate | 2023-08-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-a51f3ac3c82e4b44a09d435d2b5c03dd2023-11-20T11:17:20ZengBMCBMC Palliative Care1472-684X2023-08-012211710.1186/s12904-023-01247-9Care challenges of home health patients living with dementia: a pathway forward with palliative careConnie S. Cole0Ashley Dafoe1Caroline K. Tietbohl2Sarah R. Jordan3Amy G. Huebschmann4Hillary D. Lum5Christine D. Jones6Division of General Internal Medicine, Department of Medicine, University of Colorado Anschutz Medical CampusAdult and Child Center for Outcomes Research and Delivery Science, School of Medicine, University of Colorado, Children’s Hospital ColoradoAdult and Child Center for Outcomes Research and Delivery Science, School of Medicine, University of Colorado, Children’s Hospital ColoradoDivision of Healthcare Services, Molina Healthcare of IllinoisDivision of General Internal Medicine, Department of Medicine, University of Colorado Anschutz Medical CampusDivision of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical CampusDivision of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical CampusAbstract Background Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are frequently under pressure to find effective approaches for improving care delivery and quality. One strategy that has the potential to improve the quality of life and patient satisfaction in HHC for PLWD is the integration of palliative care. Therefore, we sought to understand the experiences and needs of PLWD and their family caregivers specifically focusing on ways that HHC and palliative care may be integrated as part of the care transition from hospital to home, to better support PLWD and their families. Methods We conducted a descriptive qualitative study focusing on the perspectives of patients, caregivers, and healthcare team members about palliative care delivery for patients receiving HHC. Interviews were audio-recorded and professionally transcribed. In this analysis, we specifically report on dementia-related content using an iterative, team-based thematic analysis approach. Results We identified three themes: 1) ’Living in the Whirlwind’ which describes the many competing demands on caregivers time and the associated feeling of loss of control, 2) ’Thinking Ahead’ which describes the importance of thinking beyond the day-to-day tasks to begin planning for the future, and 3) ‘Pathways Forward’ which describes the integration of palliative care into HHC to provide enhanced support for PLWD and their caregivers. Conclusion In this qualitative study, our formative work identified the importance of providing anticipatory guidance (e.g., safety, advance care planning) coupled with emotional and pragmatic care supports (e.g., finding resources, navigating insurance) to sustain caregivers who are struggling with the whirlwind.https://doi.org/10.1186/s12904-023-01247-9Palliative careHome health careDementiaAlzheimer’s diseaseQualitative methods |
| spellingShingle | Connie S. Cole Ashley Dafoe Caroline K. Tietbohl Sarah R. Jordan Amy G. Huebschmann Hillary D. Lum Christine D. Jones Care challenges of home health patients living with dementia: a pathway forward with palliative care BMC Palliative Care Palliative care Home health care Dementia Alzheimer’s disease Qualitative methods |
| title | Care challenges of home health patients living with dementia: a pathway forward with palliative care |
| title_full | Care challenges of home health patients living with dementia: a pathway forward with palliative care |
| title_fullStr | Care challenges of home health patients living with dementia: a pathway forward with palliative care |
| title_full_unstemmed | Care challenges of home health patients living with dementia: a pathway forward with palliative care |
| title_short | Care challenges of home health patients living with dementia: a pathway forward with palliative care |
| title_sort | care challenges of home health patients living with dementia a pathway forward with palliative care |
| topic | Palliative care Home health care Dementia Alzheimer’s disease Qualitative methods |
| url | https://doi.org/10.1186/s12904-023-01247-9 |
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