Care challenges of home health patients living with dementia: a pathway forward with palliative care

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 fr...

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Vydáno v:BMC palliative care Ročník 22; číslo 1; s. 122 - 7
Hlavní autoři: Cole, Connie S., Dafoe, Ashley, Tietbohl, Caroline K., Jordan, Sarah R., Huebschmann, Amy G., Lum, Hillary D., Jones, Christine D.
Médium: Journal Article
Jazyk:angličtina
Vydáno: London BioMed Central 29.08.2023
Springer Nature B.V
BMC
Témata:
Adults
Aged
Aging
Alzheimer's disease
Care plans
Caregivers
Chronic illnesses
Consent
Dementia
Dementia - therapy
Dementia disorders
Families & family life
Grammatical aspect
Health care
Health care policy
Health insurance
Health services
Home Care Services
Home health care
Hospice and Palliative Care Nursing
Hospice care
Hospitalists
Hospitalization
Hospitals
Humans
Integrated care
Interviews
Life satisfaction
Loss of control
Medicine
Medicine & Public Health
Older people
Pain Medicine
Palliative Care
Palliative Medicine
Patient satisfaction
Patients
Personal safety
Population aging
Primary care
Qualitative methods
Qualitative research
Quality of care
Quality of Life
Quality of Life Research
Residential care
Satisfaction
Social workers
Symptom management
Teams
United States > US
Colorado
Palliative care
Qualitative methods
Alzheimer’s disease
Home health care
Dementia
ISSN:1472-684X, 1472-684X
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Popis
Shrnutí: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.
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ISSN:1472-684X
1472-684X
DOI:10.1186/s12904-023-01247-9