Raymond Zou
Pronouns: he/him
Research Mentor(s): Lauren Gerlach
Research Mentor School/College/Department: Geriatric Psychiatry / Medicine
Program:
Authors: Raymond Zou, Anna Bochenek, Lauren Gerlach, Molly Turnwald
Session: Session 6: 3:40 pm – 4:30 pm
Poster: 1
Abstract
Patients with dementia are the fastest growing segment of hospice users, and most older adults with dementia enroll in hospice at the end of life. However, the voice of patients living with dementia is often missing in research. This study aims to identify the primary goals and values related to hospice care for dementia as identified by patients living with dementia as well as their care partners through qualitative analysis of semi-structured interviews. An analysis of these interviews showed that many patients prioritized comfort—lack of pain, peace, calmness—over longevity. In the case where a patient can not advocate for themselves, patients emphasize maintaining human dignity through basic hygiene regulation, maintaining alertness, and incorporating past interests such as music and hobbies into their care. By solidifying an agreement on end-of-life care management, even if difficult to initiate discussions, patients and families can feel prepared for the hospice journey. Hospice organizations should prioritize patient cleanliness and respect, given the importance of dignity reported by patients living with dementia. Providers should thoroughly explain side effects, emphasizing anticipated changes to comfort levels. Furthermore, non-pharmacologic treatment options should be incorporated into everyday care.
