Caregivers’ Perspectives towards Goals of Care in Dementia Patients

Abstract

aregivers of people with dementia are less able to tolerate stressors as they have higher rates of financial, emotional and physical difficulties associated with caregiving. Severity of dementia, behavioral disturbances, sleep feeding, and end of life issues could be the main patient‐related factors contributing to caregiver burden. In late stages of dementia, caregivers’ perspectives regarding the place of care and end-of-life issues may change due to increased burden and difficulties they face. Aim of the study The aim of the current study was to determine caregivers’ perspectives towards goals of care and end of life issues in moderate to severe, and severe dementia patients. Subjects & Methods A cross sectional study was conducted on 101 caregivers of moderate to severe and severe dementia patients from Geriatric hospital (outpatient clinics and inpatient department) at Ain Shams University hospitals. Patients in the current study were selected according to GDS with stages 5, 6 and 7. ADL, IADL assessment and MMSE were performed on these patients. A questionnaire was applied on caregivers about the burden they bear, type of support they need, their knowledge about progression of dementia, their perspectives towards goals of care and end-of-life issues. It included comprehensive geriatric assessment, medical history of the patients, demographic data of the caregivers, burden of caregiving & support needed for patients and caregivers, caregivers’ knowledge regarding disease progression, their attitude towards disease progression and their perspectives towards goals of care and end of life issues.