Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts.

Hsiu-Li Huang,Chien-Liang Liu,Wei-Ru Lu,Hong-Jer Chang,Stephen D Ginsberg

doi:10.1371/journal.pone.0240684

Abstract

Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.

Highlights

The prevalence of dementia is increasing due to the rapid growth of the older adult population
This study explored the effects of a family-centered advance care planning (ACP) information intervention among persons with dementia and family caregivers (FCGs)
The inclusion criteria for persons with dementia were: > 55 years of age; diagnosed with mild dementia or mild cognitive impairment based on a score of 0.5–1 on the Clinical Dementia Rating (CDR) scale or a score 18 on the Mini-Mental State Examination (MMSE); had no established ACP; and able to communicate in Mandarin or Taiwanese

Summary

Introduction

The prevalence of dementia is increasing due to the rapid growth of the older adult population. Approximately 50 million people have dementia worldwide, with an average increase of one new case of dementia every 3 seconds, which doubles every 20 years. The estimated population of people affected by dementia will reach 131.5 million people in 2050 [1]. In Taiwan, the prevalence of dementia among people over 65 years is 8.04% [2], affecting more than 290,000 people [3]. The World Health Organization reported that between 2000 and 2016 deaths due to dementia doubled, making dementia the fifth leading cause of death globally, compared with a ranking of fourteenth in 2000 [6]

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Discussion

Conclusion