Impact of home healthcare on end-of-life outcomes for people with dementia: a systematic review

BACKGROUND: Home healthcare (HHC) comprises clinical services provided by medical professionals for people living at home with various levels of care needs and health conditions. HHC may reduce care transitions from home to acute hospitals, but its long-term impact on homebound people living with dementia (PLWD) towards end-of-life remains unclear. We aim to describe the impact of HHC on acute healthcare utilization and end-of-life outcomes in PLWD. METHODS: Design: Systematic review of quantitative and qualitative original studies which examine the association between HHC and targeted outcomes. Interventions: HHC. Participants: At least 80% of study participants had dementia and lived at home. Measurements: Primary outcome was acute healthcare utilization in the last year of life. Secondary outcomes included hospice palliative care, advance care planning, continuity of care, and place of death. We briefly reviewed selected national policy to provide contextual information regarding these outcomes. RESULTS: From 6831 articles initially identified, we included five studies comprising data on 4493 participants from USA, Japan, and Italy. No included studies received a “high” quality rating. We synthesised core properties related to HHC at three implementational levels. Micro-level: HHC may be associated with a lower risk of acute healthcare utilization in the early period (e.g., last 90 days before death) and a higher risk in the late period (e.g. last 15 days) of the disease trajectory toward end-of-life in PLWD. HHC may increase palliative care referrals. Advance care planning was an important factor influencing end-of-life outcomes. Meso-level: challenges for HHC providers in medical decision-making and initiating palliative care for PLWD at the end-of-life may require further training and external support. Coordination between HHC and social care is highlighted but not well examined. Macro-level: reforms of national policy or financial schemes are found in some countries but the effects are not clearly understood. CONCLUSIONS: This review highlights the dearth of dementia-specific research regarding the impact of HHC on end-of-life outcomes. Effects of advance care planning during HHC, the integration between health and social care, and coordination between primary HHC and specialist geriatric/ palliative care services require further investigation. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-02768-3.