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Background: In Canada, more than 60% of persons living with dementia reside in their own homes, and over 25% rely heavily on their care partners (ie, family members or friends) for assistance with daily activities such as personal hygiene, eating, and walking. Assistive technology (AT) is a key dementia management strategy, helping to maintain health and social support in home and community settings. AT comprises assistive products and services required for safe and effective use. Persons living with dementia and their care partners often require multiple types of AT to maintain their needs, dignity, and autonomy. AT for dementia management is rapidly developing with abundant scientific literature, which can present a challenge to efficiently navigate and extract insights for policy and personal decision-making., Objective: This scoping review aims to synthesize review-level evidence from published scientific literature on AT to support dementia management for persons living with dementia and their care partners in their homes and communities. Research gaps in knowledge and areas for further investigation into the use and access of AT will be identified. This review will provide an overview of AT types and characteristics and chart the outcomes and conclusions in review-level evidence., Methods: This review will follow the Joanna Briggs Institute's framework for conducting scoping reviews and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. In total, 6 electronic databases will be searched. Articles will be screened according to the "Population-Concept-Context (PCC)" framework for eligible studies. Population includes persons living with dementia, their care partners, and health care professionals (eg, therapists or others who recommend AT). Concept includes AT and self-help devices of many types. Context includes homes and communities. A data charting template will guide data extraction, charting, and summarization. A descriptive numerical summary and an overview of the findings will be presented. Data, such as (1) article information (eg, author and year), (2) article characteristics (eg, review type), (3) AT types and characteristics, (4) setting and population characteristics, and (5) key review outcomes and conclusions, will be extracted., Results: A total of 10,978 unique citations were identified across the 6 electronic databases. This review is in the full-text screening stage, which is expected to be completed by October 2024., Conclusions: This review will provide a comprehensive understanding and documentation of the published scientific literature on AT to support dementia management. Findings from this review are expected to provide evidence-based insights on the complexities of AT types, uses, availability, and access. The author group's diverse national and international perspectives may contribute to knowledge exchange and influence standards to improve the daily function, safety, and well-being of persons living with dementia., Trial Registration: Open Science Framework DKSM9; https://osf.io/dksm9., International Registered Report Identifier (irrid): PRR1-10.2196/57036., (©Chaitali Desai, Erica Dove, Jarshini Nanthakumar, Emilia Main, Heather Colquhoun, Arlene Astell, Alex Mihailidis, Natasha Layton, Amer M Burhan, Brian Chan, Rosalie H Wang. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 11.11.2024.)

Beta amyloid PET scans are a minimally invasive biomarker that may inform Alzheimer's disease (AD) diagnosis. The Caregiver's Reactions and Experience (CARE) study, an IDEAS supplement, aimed to understand experiences of PET scan recipients and their care partners regarding motivations for scans, reporting and interpreting results, and impact of results. Patients with mild cognitive impairment or dementia who agreed to join the CARE-IDEAS study and their care partners participated in a baseline survey and follow-up survey approximately 18 months later, supplemented by in-depth qualitative interviews with subsets of participants. Patients who received scans and volunteered for follow-up research were more likely to be male, better educated, and have higher income than the general population. Survey information was merged with Medicare data. This article integrates findings from several CARE-IDEAS publications and provides implications for practice and research. Although most participants accurately reported scan results, they were often confused about their meaning for prognosis. Some participants reported distress with results, but there were no significant changes in measured depression, burden, or economic strain over time. Many respondents desired more information about prognosis and supportive resources. Scan results were not differentially associated with changes in service use over time. Findings suggest a need for carefully designed and tested tools for clinicians to discuss risks and benefits of scans and their results, and resources to support patients and care partners in subsequent planning. Learning of scan results provides a point-of-contact that should be leveraged to facilitate shared decision-making and person-centered longitudinal AD care., (© 2024 The American Geriatrics Society.)

Objectives: People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD's neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD's difficulties in emotion regulation and whether CP's emotion regulation relates to the PwD's neuropsychiatric symptoms, potentially revealing bias or interpersonal effects., Method: We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP ( n  = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation., Results: Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p  < 0.05), but not with CP's difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD's self-reported difficulties in emotion regulation., Conclusion: PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD's emotion regulation capability and not be biased by CP's difficulties in emotion regulation.

Background and Objectives: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers., Research Design and Methods: A multimethod approach was carried out to assess Caregiving While Black (CWB), including pre-post surveys and in-depth interviews. This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American. Caregivers engaged in online asynchronous education related to healthcare navigation, home life management, and self-care. Primary (caregiving mastery) and secondary outcomes (anxiety, depression, perceived stress, burden, perceived ability to manage behavioral and psychological symptoms) were assessed at baseline and post-course (10 weeks)., Results: Thirty-two Black caregivers from across the United States completed the course within the allotted time frame. Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion increased by 0.45 points with an effect size of 0.26 (Cohen's d). Twenty-nine caregivers participated in an optional post-course interview, and thematic analysis led to the construction of 5 overarching themes: Comfortability with a Culturally Tailored Course; Experiences Navigating the Course Platform; Utility of Course Resources; Time as a Barrier and Facilitator; Familial and Community Engagement., Discussion and Implications: Pilot findings convey a need to continue creating and receiving feedback on culturally tailored psychoeducation programs for dementia caregivers. The next steps include applying results to fuel the success of the next iteration of CWB., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

The Family-centered Function Focused Care (Fam-FFC) intervention, is a nurse-family care partnership model aimed to improve the physical and cognitive recovery in hospitalized persons living with Alzheimer's Disease Related Dementias (ADRD) while improving the care partner's experiences. Discussions of patients' needs and preferences between nurses and the patient's close family members have been found to be useful in preventing excessive stress in persons with dementia, while lessening the anxiety of care partners. However, the efficacy of dementia-specific interventions is influenced in part by the degree to which the interventions are flexible and sensitive to the patient's and care-partner's condition, needs, and preferences, including cultural preferences. Therefore, the purpose of this study is to assess the cultural appropriateness of Fam-FFC using the Ecological Validity Model (EVM). This qualitative, descriptive study included 28 consented care partners drawn from a sample of 455 dyads enrolled in the Fam-FFC intervention. An interview guide was created based on the EVM. Participants provided demographic data. Thematic analysis was conducted to analyze transcribed interviews. The majority of the sample was female (79%), Non-Hispanic (96%) and half were married. One-half of the sample represented Black care partners and one-half were White. Seventy-nine percent lived with their family member with ADRD. Three major themes were identified from the thematic analysis including Care Partner Identity, Care Partner Preferences, and Goals of Care for functional recovery of their family member living with dementia. In this study care partners wanted more social services as well as home care that supported not just physical needs but also social and recreational needs. Findings from the study offer guidance on improving the Fam-FFC intervention including strengthening education and resources on partner self-care., Competing Interests: Declaration of conflict of interestThe author(s) declare no potential conflicts of interest regarding the research, authorship, and/or publication of this article.

Introduction: Despite abundant literature on the diagnosis of dementia, limited research has explored the lived experiences of radiography practitioners when providing care to people living with dementia in the department., Objectives: This qualitative study explored the perceptions and compatibility of current professional guidance by both diagnostic imaging and radiotherapeutic radiography practitioners as well as the key stakeholders involved with developing the Society and College of Radiographers clinical practice guidelines for caring for people with dementia., Methods: This was a two-phase multi-method study. Fifteen diagnostic imaging and two therapeutic radiography practitioners from across the UK participated with online focus group discussions. Four key stakeholders involved with the development of the Society and College of Radiographers guidelines took part with individual semi-structured interviews. Data analysis included narrative and thematic analysis., Results: Participants from both phases identified enablers and barriers to providing person-centred dementia care. Three superordinate themes were identified linked to (1) Working with care partners, (2) Departmental environmental design, and (3) Communication and interprofessional infrastructure., Discussion: Many radiography practitioners still feel unprepared when caring for people living with dementia despite the clinical practice guidelines. Care partners were identified as having the potential to help alleviate some of the challenges radiographers faced. Participants were also aware of the impact of the departmental environment and recognised that poor way finding designs could lead to frustration. Radiography practitioners were not always aware that a patient was living with dementia prior to their attendance in the department making it difficult for practitioners to make appropriate accommodations such as additional time at appointments or the departmental environment. Our findings suggest there is a need for profession specific education and training for radiography practitioners to support the provision of person-centred dementia care. There is also a need to support the design of dementia friendly diagnostic imaging and radiotherapy departments.

Objectives: Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes., Method: A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors., Results: Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics., Conclusions: CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities.

Advance care planning (ACP) is an important part of comprehensive care for persons living with dementia (PLWD). While many trials have established the efficacy of ACP in improving end-of-life communication and documentation of care preferences, there remains a gap in clinical usage. Embedded pragmatic clinical trials (ePCTs) may facilitate the uptake of evidence-based care into existing healthcare by deploying efficacious ACP interventions into real-world settings. However rigorous conduct of ePCTs of ACP for PLWD presents several unique methodological considerations. Here we describe a framework for the construction of these research studies, with a focus on distinguishing between the target of study: the PLWD, their care partners, or both. We outline specific considerations at each step of the research study process including 1) participant identification/eligibility, 2) participant recruitment/enrollment, 3) intervention implementation, and 4) outcome selection/ascertainment. These considerations are weighed in further detail by describing the approaches from three published trials. Specifically, we consider how potential challenges were overcome by tradeoffs in study design. Finally, we offer directions for future growth to advance ePCTs for ACP among PLWD and catalyze future research., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Introduction: Communication is an area of health and functioning that is profoundly affected by dementia. While it is known that people living with dementia and their care partners experience disruptions to daily activities and social engagement, detailed knowledge about the lived impact of dementia-related communication changes is lacking. This study sought an in-depth understanding of the lived experience of dementia-related communication changes and the associated impact, needs, and strategies., Methods: As part of an overarching participatory design study, a qualitative (interpretive description) exploration was undertaken with people living with dementia and their care partners. Data from semi-structured interviews were analysed using thematic analysis., Results: We interviewed 13 people living with dementia and 21 care partners and drew three themes and 10 subthemes from the interviews. The first theme illustrates how dementia changes communication which in turn changes life; the second captures the impact of changes on people living with dementia and care partners emotionally and in the context of relationships; and the third describes some positive and constructive ways of moving forward with dementia-related communication changes., Conclusions: Interventions to enhance function, participation, and wellbeing for people living with dementia and their care partners need to encompass support for communication changes. There is a need to ensure that people living with dementia feel dignified and respected during communication, and that care partners and inclusive communities are educated, trained, and supported to facilitate communication., Competing Interests: Declaration of Competing Interest The authors report no conflicts of interest., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Introduction: Occupational 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., Methods: A 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., Findings: Six 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., Conclusion: Genuine 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., (© 2022 The Authors. Australian Occupational Therapy Journal published by John Wiley & Sons Australia, Ltd on behalf of Occupational Therapy Australia.)

For every individual living with dementia, the experience is unique. When you meet one person living with dementia, you have simply met one person. Dementia will change many things about life-but not all at once and often over many years. For many people, social isolation and loneliness may emerge as mental health challenges occur. This is when creating supportive interconnections are particularly critical to build meaning and purpose. Giving Voice Chorus was created in 2014 to address social isolation for people living with dementia. Our choruses, and other like-minded ones throughout the United States and the world, support new networks for people living with dementia, as well as their family members and friends. This is a behind-the-scenes story of how Giving Voice Chorus and a strong collection of similar choruses help meet cultural, social, geographic, and community needs for people who are determined to continue vibrant, creative lives with memory loss. We explore how these choruses developed and the creative lifeline they provide for individuals and families. For health-care professionals and others seeking resources and referrals, Giving Voice Chorus is a beacon of light-establishing new supportive networks with hope and affirmation., (© Copyright 2022 Creative Health Care Management.)

Objectives: Arts-based programmes for persons with dementia have shown promise in alleviating some of the caregiving challenges for family care partners. The present study sought to broaden the sociocultural perspectives of arts-based programmes by investigating the impact of a locally developed Arts & Dementia programme for persons with dementia on their family care partners in Singapore. Methods: Thirty-two family care partners of persons with dementia who participated in the Arts & Dementia programme were recruited. A mixed-methodological study was employed utilising quantitative pre- and post-programme data from the Zarit Burden Interview and Gain in Alzheimer care Instrument, and qualitative data from semi-structured group interviews. Results: Although there were no self-reported short-term changes in perceived caregiving difficulties and gains, semi-structured group interviews revealed potential caregiving benefits. Six overarching themes were identified: (1) contentment and social engagement, (2) re-connecting and developing new interests, (3) positive influence on caregiving, (4) enhancements to the programme, (5) more arts programmes, and (6) more support for families living with dementia. Conclusion: The present study highlights potential benefits of community-based arts activities in enabling caregiving to be a more positive experience for care partners.Supplemental data for this article is available online at http://dx.doi.org/10.1080/13607863.2021.2008306'I kept blaming myself for not spending enough time with him. Communication with him is different now. Watching him on the stage, he is happy and with a purpose'. (Gary, male).

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., (© The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Dementia caregivers are responsible for the daily care and management of individuals who are among the most vulnerable to the serious consequences of COVID-19. This qualitative study explores the experience of Black dementia caregivers during the COVID-19 pandemic in the United States. Nineteen Black dementia caregivers were recruited to participate in semi-structured focus groups held in April 2021. Four overarching themes were constructed during analysis: social isolation , decreased well-being , the good and bad of telehealth , and challenges fulfilling health care needs . The results indicate the experience of Black dementia caregivers overlaps with existing literature on the experiences of dementia caregivers of other races during COVID-19. These results can assist in addressing the specific needs and improving the experiences of dementia caregivers in current and future public health crises.

Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia and their care partners in the North-West of England. Semi-structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well-being and social health for all participants. Community-based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise., (© 2021 John Wiley & Sons Ltd.)

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs., (© 2022 The American Geriatrics Society.)

Background: Research suggests there is a lack of post-diagnostic support to enable people living with dementia to fulfil social and active lives throughout their dementia journey. Gardening has been found to have many benefits for people living with dementia. Although such research is important, most research frames people with dementia as passive recipients of stimulation. Research into the impact of a community-based gardening group, where people living with dementia are active in the development of an outdoor space, is underdeveloped. Knowledge about the impact of participating in such groups is also sparse. The Good Life Club (GLC) was co-developed and evaluated to respond to these gaps., Objectives: The primary aim of this article is to present the findings regarding the impact of attending the GLC on the self-reported well-being for people living with dementia and care partners., Methods: Qualitative data were collected via 22 semi-structured interviews. Fourteen interviews were conducted before the GLC and eight after the GLC. Thematic analysis was used to analyse data. Dementia Care Mapping data were collected to supplement the interview data., Findings: Four key themes were identified. The first was that participants considered having active participation in social life to be a key aspect of living a good life. The second was that the way that the GLC was set up and delivered gave the participants ownership of the GLC and within this they felt able to contribute. The third was the importance of social connectedness and peer support to the well-being of both people living with dementia and care partners. Fourth, positive mood and well-being was directly experienced through gardening., Conclusions: The combination of long-term investment of time and energy to the GLC, ongoing friendships and in-session autonomy act as key ingredients in creating a group that is relaxed, full of humour and highly valued.

We present the development of a regional dementia strategy in Southwestern Ontario, Canada. We worked with stakeholders in a regional health authority to develop a dementia strategy. We conducted interviews with persons with dementia and their care partners (n = 26) and health care administrators and policy makers (n = 33); and administered a priority-setting survey (n = 64). Both participant groups identified provider compassion, professionalism, and care in the early stages of dementia as system strengths. Both groups also highlighted a need for more integration and coordination, a need for more person-centred care, support for care partners, and more flexibility in the provision and receipt of services. The highest-ranked priorities were improving care partner support, improving access to care, and improving system-wide quality. We integrate these strengths, needs, and priorities in a strategic framework, "Whole Person, Whole Journey". Organizations developing a dementia strategy may use this framework as a springboard for their own work.

Promoting access to heritage settings has been acknowledged as a way to promote well-being in the United Kingdom for people living with dementia and their care partners. Yet there is a lack of information available internationally on the contribution of heritage sites to promote well-being and social inclusion for those living with dementia. This study addresses this gap by reporting on the impact for 48 people of participating in the 'Sensory Palaces' (SP) programme run by Historic Royal Palaces at Hampton Court and Kew Palaces in the United Kingdom. Two primary data sources were used; post-session interviews involving 30 participants (the person living with dementia and/or their care partners), and 131 sets of self-complete pre- and post-session mood questionnaires administered directly before and after SP session attendance. Analysis of the data sets is presented under three themes: enjoyment and engagement; connecting and learning and place, space and time. The findings demonstrate that participants highly valued the heritage sessions and reported positively on the impact this had for their individual well-being and their relationships with one another. This study highlights the opportunity for heritage sites to contribute to promoting well-being for people living with dementia.

Background: Internationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process., Methods: Relevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently. Eligibility criteria for included studies were: (i) people living with dementia and/or care partners; (ii) PPI activity in dementia research conducted in the European Union (EU); and (iii) published between 2000 and 2018. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2 SF) was used to collate the data. There was no language restriction other than the abstract needed to be available in English., Results: We found 19 studies from the UK and one from the Netherlands meeting inclusion criteria. No studies from other EU countries met inclusion criteria. Studies reported various methods of PPI including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach. The reported aims of PPI included identifying and prioritising research questions (n = 4), research design (n = 5), undertaking and managing research (n = 8), and data analysis and interpretation (n = 3). All PPI related to design and implementation of non-pharmacological studies. One study described two pharmacological studies as case studies incorporating PPI. Seventeen studies reported anecdotal impacts of PPI., Conclusions: Further development of PPI in dementia research in the EU and in pharmacological dementia research is required. Given the wide range of objectives of PPI in dementia research, PPI methods should be flexible and appropriate for the research context. Researchers should also formally evaluate and report the impacts of PPI for researchers, patients and the general public using good quality research designs to foster development of the field and enable the benefits and challenges of PPI to be better understood., Trial Registration: PROSPERO 2017: CRD42017053260 .

Introduction Objective Methods Results Conclusion The Geriatric Emergency Care Applied Research Network 2.0‐Advancing Dementia Care (GEAR 2.0‐ADC) aims to advance research efforts to improve the emergency care of persons living with dementia (PLWDs).To support this objective, GEAR 2.0‐ADC convened a virtual consensus conference to prioritize emergency care research opportunities for PLWDs inclusive of perspectives of PLWDs to ensure identification of research gaps in response to their experiences and priorities. Inclusion of PLWDs as research partners is increasingly recognized as a best practice, however, approaches to facilitating consensus participation are lacking.Best practices for supporting the engagement of PLWDs in a consensus conference, applied across its three phases (pre‐conference, during the conference, and post‐conference), include: establishing a learning environment focused on research priorities before the event, presenting information in ways that align with participants' learning preferences while accommodating cognitive impairments, and providing multiple opportunities and methods for gathering post‐conference feedback from PLWDs.These strategies were identified by PLWDs and care partners (CPs) through semi‐structured interviews, who were involved in the convening process, aimed at exploring ways to enhance facilitation techniques for participants.Additionally, these summarized insights aim to encourage the use of community‐engaged approaches in discussions and consensus‐building around research priorities in emergency care, particularly for PLWDs and their CPs. [ABSTRACT FROM AUTHOR]

Background Objective Methods Results Conclusions Psychosis and cognitive decline often co‐occur in Parkinson's Disease (PD), which complicates assessment.We measured agreement between patients with PD and dementia (PDD) and care partners (CPs) in their independent evaluation of PD‐related psychotic symptoms.We compared responses to a PD psychosis rating scale (SAPS‐PD) in 21 dyads of patients with PDD and cognitively normal CPs. We assessed the concordance of responses using the intraclass correlation coefficient (ICC). Following the psychosis assessment, the clinician used all available information and adjudicated who provided the most reliable responses.Dyads demonstrated poor concordance in summary scores (ICC = 0.464). Six of the nine individual items had poor agreement. The clinician adjudicated the patient's response as the more reliable in 71.4% of cases.Although many psychotic symptoms are internal and not observable, in the context of PDD, both patient and CP inputs are valuable, but final adjudication favors patient responses. [ABSTRACT FROM AUTHOR]

ObjectivesMethodsResultsConclusionsClinical ImplicationsThe purpose of this study was to explore the mediating roles of care receiver clinical factors on the relationship between care partner preparedness and care partner desire to seek long-term care admission for persons living with dementia at hospital discharge.This study analyzed data from the Family centered Function-focused Care (Fam-FFC), which included 424 care receiver and care partner dyads. A multiple mediation model examined the indirect effects of care partner preparedness on the desire to seek long-term care through care receiver clinical factors (behavioral and psychological symptoms of dementia [BPSD], comorbidities, delirium severity, physical function, and cognition).Delirium severity and physical function partially mediated the relationship between care partner preparedness and care partner desire to seek long-term care admission (B = -.011; 95% CI = -.019, −.003, and B = -.013; 95% CI = -.027, −.001, respectively).Interventions should enhance care partner preparedness and address delirium severity and physical function in hospitalized persons with dementia to prevent unwanted nursing home placement at hospital discharge.Integrating care partner preparedness and care receiver clinical factors (delirium severity and physical function) into discharge planning may minimize care partner desire to seek long-term care. [ABSTRACT FROM AUTHOR]

Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia. [ABSTRACT FROM AUTHOR]

Background and objectivesOlder adults with cognitive impairment often experience poor oral health outcomes due to inadequate oral hygiene practices. This pilot study aimed to evaluate the feasibility of a care partner-assisted intervention to improve the oral hygiene of community-dwelling older adults with cognitive impairment.Material and methodsThe 6-month intervention included 25 older adults with mild dementia or mild cognitive impairment, who were randomly assigned to Treatment Group 1 or Treatment Group 2. Treatment Group 1 (n = 7) received an educational booklet. Treatment Group 2 (n = 18) received a booklet, a tailored care plan for the participants with cognitive impairment and the care partner received four coaching sessions to learn to facilitate good oral hygiene. Both groups received electric toothbrushes. The study consisted of a 3-month active intervention and 3-month maintenance phase. The outcomes of gingival index, plaque index and overall oral health status based on the Oral Health Assessment Tool were measured at baseline, 3 months (end of active intervention) and 6 months of the study.ResultsThis study had very low dropout rate. Participants' oral hygiene improved in this study. In comparison to Treatment Group 1, participants in Treatment Group 2 had a greater reduction in plaque level and gingival inflammation, and greater improvement in overall oral health status.ConclusionThis study demonstrates the feasibility of this intervention designed to improve the oral health of persons with cognitive impairment and it lays the foundation for using this protocol in a future large randomised clinical trial.

Introduction: Social robot adoption by older adults and people living with dementia is limited by several barriers, including a lack of emotional alignment with social robots and perceptions of stigma around social robot use. The goal of this work was to address these barriers by engaging end-users in discussions on factors that could affect emotional connection to a social robot and considerations around using a social robot in public. Methods: We conducted seven 90-min online workshops with older adults with (n = 2) and without dementia (n = 25) and care partners (n = 17). Older adults with and without dementia were in their 50s - 80s, and care partners were in their 30s - 70s. Seven older adults, seven care partners, and one older adult with dementia indicated that they had used a robot before. Online workshops had 4-8 participants each, and began with video demonstrations of pet-like robot MiRo and tabletop robot T-Top, as well as a live demonstration of MiRo. Participants completed the Multi-Dimensional Robot Attitude Scale before the workshops and the Psychosocial Impact of Assistive Devices Scale and two Zoom polls during the workshops. The audio and chat responses from the workshops were transcribed verbatim and content analysis was performed on the transcripts. Results: Our analysis revealed three broad themes and 10 subthemes. In their discussions on features and applications, participants highlighted preferred forms of communication with a robot and ways in which a robot could support connection between people. For example, robots could improve the quality of communication between care partners and the person for whom they care. While many agreed that a social robot should match their level of emotion and interactivity, participants had different preferences for social robot emotional range and display features. Finally, participants discussed considerations around showing a robot to other people; several participants suggested that a robot could help raise awareness of ageing and dementia while others shared concerns about stigma and attracting negative attention from an audience. Discussion: Incorporating these findings into the design and implementation of social robots will result in devices that are better-suited to the needs of older adults, people living with dementia, and care partners. [ABSTRACT FROM AUTHOR]

IntroductionSocial robot adoption by older adults and people living with dementia is limited by several barriers, including a lack of emotional alignment with social robots and perceptions of stigma around social robot use. The goal of this work was to address these barriers by engaging end-users in discussions on factors that could affect emotional connection to a social robot and considerations around using a social robot in public.MethodsWe conducted seven 90-min online workshops with older adults with (n = 2) and without dementia (n = 25) and care partners (n = 17). Older adults with and without dementia were in their 50s – 80s, and care partners were in their 30s – 70s. Seven older adults, seven care partners, and one older adult with dementia indicated that they had used a robot before. Online workshops had 4-8 participants each, and began with video demonstrations of pet-like robot MiRo and tabletop robot T-Top, as well as a live demonstration of MiRo. Participants completed the Multi-Dimensional Robot Attitude Scale before the workshops and the Psychosocial Impact of Assistive Devices Scale and two Zoom polls during the workshops. The audio and chat responses from the workshops were transcribed verbatim and content analysis was performed on the transcripts.ResultsOur analysis revealed three broad themes and 10 subthemes. In their discussions on features and applications, participants highlighted preferred forms of communication with a robot and ways in which a robot could support connection between people. For example, robots could improve the quality of communication between care partners and the person for whom they care. While many agreed that a social robot should match their level of emotion and interactivity, participants had different preferences for social robot emotional range and display features. Finally, participants discussed considerations around showing a robot to other people; several participants suggested that a robot could help raise awareness of ageing and dementia while others shared concerns about stigma and attracting negative attention from an audience.DiscussionIncorporating these findings into the design and implementation of social robots will result in devices that are better-suited to the needs of older adults, people living with dementia, and care partners.

Objectives: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools.Methods: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis.Results: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools.Conclusions: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions. [ABSTRACT FROM AUTHOR]

Aim: This study aims to classify, describe, and compare the problems reported by care partners of adults with Alzheimer's disease (AD) and Lewy body dementia (LBD) using the International Classification of Functioning Disability and Health (ICF) Methods: Problems that care partners experience were collected during a problem-solving training intervention. The meaningful concepts were then extracted and linked to the ICF using a standardized linking technique. Results: 402 meaningful concepts were extracted from 128 problems reported by care partners. 79.4% of the concepts were linkable to the ICF. "Body functions" was most frequently addressed followed by "Activities and participation." LBD care partners reported more problems (M = 23.6 ± 13.4) on average than AD care partners (M = 19.4 ± 12.1). LBD care partners reported greater relative proportions of problems in mental function (emotional and sleep functions) than AD care partners. Conclusion: This study suggests that the experience of LBD care partners may include significantly more challenges and may be more emotionally demanding than the care experience of AD care partners. Interventions designed to support care partners of adults with dementia may need to be tailored to meet the needs of care partners based on the care receiver's type of dementia. [ABSTRACT FROM AUTHOR]

Aim: This study aims to classify, describe, and compare the problems reported by care partners of adults with Alzheimer's disease (AD) and Lewy body dementia (LBD) using the International Classification of Functioning Disability and Health (ICF) Methods: Problems that care partners experience were collected during a problem-solving training intervention. The meaningful concepts were then extracted and linked to the ICF using a standardized linking technique. Results: 402 meaningful concepts were extracted from 128 problems reported by care partners. 79.4% of the concepts were linkable to the ICF. "Body functions" was most frequently addressed followed by "Activities and participation." LBD care partners reported more problems (M = 23.6 ± 13.4) on average than AD care partners (M = 19.4 ± 12.1). LBD care partners reported greater relative proportions of problems in mental function (emotional and sleep functions) than AD care partners. Conclusion: This study suggests that the experience of LBD care partners may include significantly more challenges and may be more emotionally demanding than the care experience of AD care partners. Interventions designed to support care partners of adults with dementia may need to be tailored to meet the needs of care partners based on the care receiver's type of dementia. [ABSTRACT FROM AUTHOR]

Background/Objectives: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. Design and Setting: Semi‐structured telephonic interviews. Participants: Seventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid‐β PET scan result through their participation in preclinical AD research. Measurement Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid‐β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory. Results: Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease‐modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans. Conclusion: Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre‐caregiver role. [ABSTRACT FROM AUTHOR]

The purpose of this study was to describe the impacts of art museum-based dementia programming on participating care partners (CPs). Data were collected through telephone interviews with 29 caregivers who participated in one of three dementia programs: here: now at The Frye Art Museum, Seattle; Meaningful Moments at the Dallas Museum of Art, Texas; and Minds on Art at the Detroit Institute of the Arts, Michigan. CPs reported that the program afforded them multiple benefits for their well-being, including stress relief and reduced feelings of social isolation. Results suggest the value of programs such as these within the growing population affected by dementia. [ABSTRACT FROM AUTHOR]

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Background: Mealtimes are an essential part of living and quality of life for everyone, including persons living with dementia. A longitudinal qualitative study provided understanding of the meaning of mealtimes for persons with dementia and their family care partners. Strategies were specifically described by families to support meaningful mealtimes. The purpose of this manuscript is to describe the strategies devised and used by these families living with dementia.Methods: A longitudinal qualitative study was undertaken to explore the meaning and experience of mealtimes for families living with dementia over a three-year period. 27 families [older person with dementia and at least one family care partner] were originally recruited from the community of South-Western Ontario. Individual and dyad interviews were conducted each year. Digitally recorded transcripts were analyzed using grounded theory methodology. Strategies were identified and categorized.Results: Strategies to support quality mealtimes were devised by families as they adapted to their evolving lives. General strategies such as living in the moment, as well as strategies specific to maintaining social engagement and continuity of mealtime activities were reported.Conclusions: In addition to nutritional benefit, family mealtimes provide important opportunities for persons with dementia and their family care partners to socially engage and continue meaningful roles. Strategies identified by participants provide a basis for further education and support to families living with dementia. [ABSTRACT FROM AUTHOR]