End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

Xie, Bin; Berkley, Amy; Kwak, Jung; Fleischmann, Kenneth R.; Champion, Jane Dimmitt; Koltai, Kolina

doi:10.1177/2050312118777517

Cited by 21 publications

(28 citation statements)

References 38 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for conducting systematic literature reviews and following procedures used in previous systematic literature reviews [ 17 - 19 ], we performed 3 rounds of search in selected databases. Because this review focuses on AI and ADRD management, we searched databases commonly used for research not only in the health sciences but also in computer science and engineering: PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus with Full Text, PsycINFO, IEEE Xplore Digital Library, and ACM Digital Library.…”

Section: Methodsmentioning

confidence: 99%

“…The 30 papers in our final sample were coded using a framework consistent with our prior work [ 17 - 19 ], summarizing key information from each paper. The coding included each study’s publication year, study aim, research method, participant characteristics, sample size, country/area where data collection took place, dosage of AI technology (ie, amount and frequency of time exposed to the AI technology), outcome measures, and key findings.…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Artificial Intelligence for Caregivers of Persons With Alzheimer’s Disease and Related Dementias: Systematic Literature Review

Xie¹,

Tao²,

Li³

et al. 2020

JMIR Med Inform

Self Cite

View full text Add to dashboard Cite

Background Artificial intelligence (AI) has great potential for improving the care of persons with Alzheimer’s disease and related dementias (ADRD) and the quality of life of their family caregivers. To date, however, systematic review of the literature on the impact of AI on ADRD management has been lacking. Objective This paper aims to (1) identify and examine literature on AI that provides information to facilitate ADRD management by caregivers of individuals diagnosed with ADRD and (2) identify gaps in the literature that suggest future directions for research. Methods Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for conducting systematic literature reviews, during August and September 2019, we performed 3 rounds of selection. First, we searched predetermined keywords in PubMed, Cumulative Index to Nursing and Allied Health Literature Plus with Full Text, PsycINFO, IEEE Xplore Digital Library, and the ACM Digital Library. This step generated 113 nonduplicate results. Next, we screened the titles and abstracts of the 113 papers according to inclusion and exclusion criteria, after which 52 papers were excluded and 61 remained. Finally, we screened the full text of the remaining papers to ensure that they met the inclusion or exclusion criteria; 31 papers were excluded, leaving a final sample of 30 papers for analysis. Results Of the 30 papers, 20 reported studies that focused on using AI to assist in activities of daily living. A limited number of specific daily activities were targeted. The studies’ aims suggested three major purposes: (1) to test the feasibility, usability, or perceptions of prototype AI technology; (2) to generate preliminary data on the technology’s performance (primarily accuracy in detecting target events, such as falls); and (3) to understand user needs and preferences for the design and functionality of to-be-developed technology. The majority of the studies were qualitative, with interviews, focus groups, and observation being their most common methods. Cross-sectional surveys were also common, but with small convenience samples. Sample sizes ranged from 6 to 106, with the vast majority on the low end. The majority of the studies were descriptive, exploratory, and lacking theoretical guidance. Many studies reported positive outcomes in favor of their AI technology’s feasibility and satisfaction; some studies reported mixed results on these measures. Performance of the technology varied widely across tasks. Conclusions These findings call for more systematic designs and evaluations of the feasibility and efficacy of AI-based interventions for caregivers of people with ADRD. These gaps in the research would be best addressed through interdisciplinary collaboration, incorporating complementary expertise from the health sciences and computer science/engineering–related fields.

show abstract

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Artificial Intelligence for Caregivers of Persons With Alzheimer’s Disease and Related Dementias: Systematic Literature Review

Xie¹,

Tao²,

Li³

et al. 2020

JMIR Med Inform

Self Cite

View full text Add to dashboard Cite

show abstract

“…Neither of these recent reviews focused on decision-making processes. The literature review conducted by Xie et al (2018) centered on end-of-life decision-making by caregivers of persons with dementia and concluded that it is an understudied area. Greater research is needed to produce tools and educational materials to help guide caregivers in the decision-making processes for persons with dementia who are end-of-life (Xie et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…The literature review conducted by Xie et al (2018) centered on end-of-life decision-making by caregivers of persons with dementia and concluded that it is an understudied area. Greater research is needed to produce tools and educational materials to help guide caregivers in the decision-making processes for persons with dementia who are end-of-life (Xie et al, 2018). Finally, a systematic review by Daly et al (2018) did explore the processes of engaging people with dementia themselves in shared decision-making.…”

Section: Discussionmentioning

confidence: 99%

How Dementia Caregivers Make Health Service Decisions: A Scoping Review and Implications for Grounded Theory Studies

Kokorelias

Ashcroft

2020

SAGE Open

View full text Add to dashboard Cite

The purpose of this study is to explore the grounded theory literature surrounding the health care decisions of dementia caregivers and to evaluate the rigor of these studies according to methodological guidelines. This scoping review was guided by Arksey and O’Malley’s scoping review framework. Articles were then evaluated against key principals of grounded theory. Results from five included articles show that while researchers label their study as grounded theory, some aspects of the methodological principles do not get adhered to. We draw lessons from these shortcomings to make recommendations for future research. Exploration of the shortcomings of grounded theory research could offer suggestions for improving the overall methodological rigor in dementia caregiving research, which may enhance the credibility of the findings. Grounded theory methodologies in dementia caregiving research could move findings from qualitative descriptions to explanations of processes, such as substitute decision-making for dementia caregivers.

show abstract

“…Yet, reviews of the literature on the value of decision aids in dementia care have thus far been relatively limited and fraught with challenges. Researchers have found that there are few well-designed studies on the subject, that various studies tend to employ different decision aids, and that publications often fail to provide specific information on the type of decision aids that were used (Xie et al, 2018). As there were 50 million people living with dementia worldwide as of 2018, a number expected to triple by 2050 (Patterson, 2018), the importance of continuing research to develop and advance the tools needed by those who care for individuals with dementia cannot be understated.…”

mentioning

confidence: 99%

Navigating unknown terrain: decision aids in dementia care

Page¹,

Yehyawi²

2019

Int. Psychogeriatr.

View full text Add to dashboard Cite

End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

Cited by 21 publications

References 38 publications

Artificial Intelligence for Caregivers of Persons With Alzheimer’s Disease and Related Dementias: Systematic Literature Review

Artificial Intelligence for Caregivers of Persons With Alzheimer’s Disease and Related Dementias: Systematic Literature Review

How Dementia Caregivers Make Health Service Decisions: A Scoping Review and Implications for Grounded Theory Studies

Navigating unknown terrain: decision aids in dementia care

Contact Info

Product

Resources

About