Dataset Information

Can Automated Vehicles Be Useful to Persons Living With Dementia? The Perspectives of Care Partners of People Living With Dementia.

ABSTRACT:

Background and objectives

Driving cessation is a complex challenge with significant emotional and health implications for people with dementia, which also affects their family care partners. Automated vehicles (AVs) could potentially be used to delay driving cessation and its adverse consequences for people with dementia and their care partners. Yet, no study to date has investigated whether care partners consider AVs to be potentially useful for people with dementia.

Research design and methods

This mixed-methods study assessed the views of 20 former or current family care partners of people with dementia on AV use by people with dementia. Specifically, questionnaires and semistructured interviews were used to examine care partners' acceptance of AV use by people with dementia and their views about the potential usefulness of AVs for people with dementia.

Results

The results demonstrated that care partners identified possible benefits of AV use by people with dementia such as their anticipated higher social participation. However, care partners also voiced major concerns around AV use by people with dementia and reported significantly lower levels of trust in and perceived safety of AVs if used by the person with dementia in their care compared to themselves. Care partners' concerns about AV use by people with dementia included concerns around the driving of people with dementia that AVs are not designed to address; concerns that are specific to AVs but are not relevant to the nonautomated driving of people with dementia; and concerns that arise from existing challenges around the nonautomated driving of people with dementia but may be exacerbated by AV use.

Discussion and implications

Findings from this study can inform future designs of AVs that are more accessible and useful for people with dementia.

SUBMITTER: Haghzare S

PROVIDER: S-EPMC9372895 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Publications

Can Automated Vehicles Be Useful to Persons Living With Dementia? The Perspectives of Care Partners of People Living With Dementia.

Haghzare Shabnam S Delfi Ghazaleh G Stasiulis Elaine E Mohamud Hodan H Dove Erica E Rapoport Mark J MJ Naglie Gary G Mihailidis Alex A Campos Jennifer L JL

The Gerontologist 20220801 7

<h4>Background and objectives</h4>Driving cessation is a complex challenge with significant emotional and health implications for people with dementia, which also affects their family care partners. Automated vehicles (AVs) could potentially be used to delay driving cessation and its adverse consequences for people with dementia and their care partners. Yet, no study to date has investigated whether care partners consider AVs to be potentially useful for people with dementia.<h4>Research design ...[more]

PMID: 34971373

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Project description:ObjectivesTo synthesize published research exploring emergency department (ED) communication strategies and decision-making with persons living with dementia (PLWD) and their care partners as the basis for a multistakeholder consensus conference to prioritize future research.DesignSystematic scoping review.Settings and participantsPLWD and their care partners in the ED setting.MethodsInformed by 2 Patient-Intervention-Comparison-Outcome (PICO) questions, we conducted systematic electronic searches of medical research databases for relevant publications following standardized methodological guidelines. The results were presented to interdisciplinary stakeholders, including dementia researchers, clinicians, PLWD, care partners, and advocacy organizations. The PICO questions included: How does communication differ for PLWD compared with persons without dementia? Are there specific communication strategies that improve the outcomes of ED care? Future research areas were prioritized.ResultsFrom 5451 studies identified for PICO-1, 21 were abstracted. From 2687 studies identified for PICO-2, 3 were abstracted. None of the included studies directly evaluated communication differences between PLWD and other populations, nor the effectiveness of specific communication strategies. General themes emerging from the scoping review included perceptions by PLWD/care partners of rushed ED communication, often exacerbated by inconsistent messages between providers. Care partners consistently reported limited engagement in medical decision-making. In order, the research priorities identified included: (1) Barriers/facilitators of effective communication; (2) valid outcome measures of effective communication; (3) best practices for care partner engagement; (4) defining how individual-, provider-, and system-level factors influence communication; and (5) understanding how each member of ED team can ensure high-quality communication.Conclusions and implicationsResearch exploring ED communication with PLWD is sparse and does not directly evaluate specific communication strategies. Defining barriers and facilitators of effective communication was the highest-ranked research priority, followed by validating outcome measures associated with improved information exchange.

Project description:Background: Behavioral and psychological symptoms of dementia (BPSD, also known as neuropsychiatric symptoms (NPS), changed behaviors and responsive behaviors), occur in up to 90 percent of people living with dementia (PLWD). These symptoms and behaviors strongly correlate with functional and cognitive impairment and contribute to ~30% of overall dementia costs. As decisions regarding care and strategies for BPSD are generally based on professional frames of reference, this study investigates whether the perspectives of PLWD and families/care partner on BPSD terminology can inform a more nuanced conceptualization of BPSD. Methods: PLWD and families/care partners participated in one-on-one semi-structured interviews. A thematic iterative approach was used to code the data and identify common themes until theoretical saturation was reached. Themes were compared between groups. Data were analyzed deductively in relation to pre-existing terminology regarding BPSD, and inductively to discover new ideas on use of such terminology as perceived by PLWD and others. Results: Forty-one volunteers were interviewed: 21 PLWD, mean age 71 yrs, mean Mini-Mental State Examination score 25, and 20 family members/care partners. Three main themes emerged from the data: (1) descriptions of BPSD from people with lived experience compared to clinical terms, (2) viewpoints on interpreting causes, and (3) experiences of concurrent BPSD. The experiences described and terms used by PLWD and families/care partners differed from terms used in existing professional frameworks (e.g., "disinhibition" described as 'loss of filter') and there were differences between PLWD and family members' interpretations of BPSD causes. Discussion/Conclusion: Reports from PLWD and families/carers describing their experiences of BPSD suggest a reconceptualization of BPSD terminology is needed to understand and de-stigmatize these symptoms and behaviors. For example, the term "agitated/hard to handle" would benefit by clearer, contextualized description, such as "frustrated with cognitive decline, discriminatory behavior and inadequate support systems." In better understanding individual expressions of BPSD, families, professionals and societies will be able to respond in ways that are helpful for PLWD. An informed, integrated understanding of BPSD and improved terminology use will have the potential to improve the quality of care and support for PLWD.

Project description:Background and objectivesHospitalized persons living with dementia are at risk for functional decline, behavioral symptoms of distress, and delirium, all persisting in the postacute period. In turn, family care partners (FCPs) experience increased anxiety and lack of preparedness for caregiving, compounding existing strain and burden. Family-centered Function-focused Care (Fam-FFC) purposefully engages FCPs in assessment, decision-making, care delivery, and evaluation of function-focused care during and after hospitalization (within 48 hours of discharge, weekly telephone calls for a total of 7 additional weeks, then monthly for 4 months). The objective of this study was to test the efficacy of Fam-FFC.Research design and methodsA cluster randomized controlled trial included 455 dyads of persons living with dementia and FCPs in 6 medical units in 3 hospitals. Patient outcomes included return to baseline physical function, behavioral symptoms of distress, depressive symptoms, and delirium severity. Family care partner measures included preparedness for caregiving, anxiety, strain, and burden.ResultsMultilevel level modeling demonstrated that the likelihood of returning to baseline function across time for Fam-FFC participants was twice that of the control group by the end of 6 months (OR = 2.4, p = .01, 95% CI 1.2-4.7). Family-centered Function-focused Care was also associated with fewer symptoms of distress (b = -1.1, SE = 0.56, p = .05) but no differences in the amount of moderate physical activity, depressive symptoms, and delirium severity. Preparedness for caregiving increased significantly only from 2 to 6 months (b = 0.89, SE = 0.45, d = 0.21, overall p = .02) in the intervention group, with no group differences in anxiety, strain, and burden.Discussion and implicationsFamily-centered Function-focused Care may help prevent some of the postacute functional decline and behavioral symptoms in hospitalized persons living with dementia. Further research is needed to promote sustained improvements in these symptoms with more attention to the postacute needs of the care partner.

Project description:IntroductionOccupational therapists may recommend and support technology use for facilitating independence, safety, wellbeing, and participation. There are high expectations for technology for people living with dementia. However, there is recognition that technologies will need to improve to deliver these expected benefits. People living with dementia have historically been excluded from direct involvement in research and design. A program of participatory research was undertaken to codesign technologies and technology research with people living with dementia and care partners. This work aims to capture the requirements, actions, and barriers experienced in forming these partnerships in technology research and design.MethodsA shared metareflection of experiences was conducted by members (5) of the research teams involved in three participatory research and technology design studies. The team comprising living experience experts, an occupational therapist, and interaction designer reflected on their experiences and derived recommendations. Key considerations for effective partnerships were drawn inductively by the authors from study experiences, materials, and reflexive discussion.FindingsSix core areas were identified. These were four action areas-(1) Agree on the value; (2) The time to start partnering is now; (3) Ask not assume; and (4) Push back on 'we always have'-(5) barriers and tensions, and (6) unexpected benefits. The reflections indicated that genuine partnerships and engagements were possible with living experience experts in research and design teams. These required resourcing and focussed actions to promote partnership. Despite some structural changes that encourage partnering, there are considerable barriers to this engagement; however, benefits beyond the expected ones can be realised.ConclusionGenuine partnerships in technology research and design with living experience experts are possible and lead to benefits for the team, research outcomes, and technologies. Recommended actions could support expansion of effective partnerships with people living with dementia and care partners as well as other partnerships in research.

Project description:IntroductionPeople living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences.ObjectiveTo describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families.MethodsFocus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis.ResultsFifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours).DiscussionAged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.

Dataset Information

Can Automated Vehicles Be Useful to Persons Living With Dementia? The Perspectives of Care Partners of People Living With Dementia.

Background and objectives

Research design and methods

Results

Discussion and implications

Publications

Can Automated Vehicles Be Useful to Persons Living With Dementia? The Perspectives of Care Partners of People Living With Dementia.

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