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.

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Advanced care planning (ACP) includes advance directives (AD), which can specify provisions for palliative care and types of life-sustaining treatments for an individual requiring end-of-life (EoL) care. ACP for persons in the early stages of cognitive decline can decrease anxiety and conflict for family members needing to make decisions about EoL-care, which is especially critical for family caregivers (FCGs) if they play a role as a surrogate regarding healthcare decisions. However, ACP for persons with cognitive impairment (PWCIs) is often overlooked. This study explored the effects of a family-centered ACP intervention on decisions about EoL-care, life-sustaining treatment decisions, and discussions of related topics among PWCIs and FCGs. The study was conducted in outpatient clinics of regional teaching hospitals in northern Taiwan. Participants were dyads consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. The family-centered ACP intervention was provided by an ACP-trained senior registered nurse. A one-group, pretest–posttest design was used to evaluate the effect of the intervention on 44 dyads. Four structured questionnaires collected data regarding familiarity with ACP, intention to engage in ACP, participation in personal discussions between the dyads about ACP, and consistency between PWCIs and FCGs for decisions about life-sustaining treatments at EoL. Paired t, Kappa, and McNemar tests were used to compare differences between pre-intervention data (pretest) and post-intervention data (posttest). There were significant increases in familiarity with ACP, components of ACP, and the number of topics PWCIs and FCGs personally discussed surrounding EoL-care decisions. There was no change for either group in wanting to have a formal ACP consultation and only modest increases in consistency between PWCIs and FCGs for life-sustaining treatment decisions after completion of the family-centered ACP intervention. Clinicians caring for PWCIs should incorporate family-centered ACP interventions and support ongoing discussions about life-sustaining medical treatments to ensure their preferences regarding EoL-care are respected. The accessibility and availability of consultations about ACP should also be provided.