A psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: a single-masked, phase 3, superiority, randomised controlled trial.

BACKGROUND: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers. METHODS: We did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138. FINDINGS: Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events. INTERPRETATION: To our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services. FUNDING: UK Alzheimer's Society.

Artificial Intelligence and Technology Collaboratories: Innovating aging research and Alzheimer's care.

This perspective outlines the Artificial Intelligence and Technology Collaboratories (AITC) at Johns Hopkins University, University of Pennsylvania, and University of Massachusetts, highlighting their roles in developing AI-based technologies for older adult care, particularly targeting Alzheimer's disease (AD). These National Institute on Aging (NIA) centers foster collaboration among clinicians, gerontologists, ethicists, business professionals, and engineers to create AI solutions. Key activities include identifying technology needs, stakeholder engagement, training, mentoring, data integration, and navigating ethical challenges. The objective is to apply these innovations effectively in real-world scenarios, including in rural settings. In addition, the AITC focuses on developing best practices for AI application in the care of older adults, facilitating pilot studies, and addressing ethical concerns related to technology development for older adults with cognitive impairment, with the ultimate aim of improving the lives of older adults and their caregivers. HIGHLIGHTS: Addressing the complex needs of older adults with Alzheimer's disease (AD) requires a comprehensive approach, integrating medical and social support. Current gaps in training, techniques, tools, and expertise hinder uniform access across communities and health care settings. Artificial intelligence (AI) and digital technologies hold promise in transforming care for this demographic. Yet, transitioning these innovations from concept to marketable products presents significant challenges, often stalling promising advancements in the developmental phase. The Artificial Intelligence and Technology Collaboratories (AITC) program, funded by the National Institute on Aging (NIA), presents a viable model. These Collaboratories foster the development and implementation of AI methods and technologies through projects aimed at improving care for older Americans, particularly those with AD, and promote the sharing of best practices in AI and technology integration. Why Does This Matter? The National Institute on Aging (NIA) Artificial Intelligence and Technology Collaboratories (AITC) program's mission is to accelerate the adoption of artificial intelligence (AI) and new technologies for the betterment of older adults, especially those with dementia. By bridging scientific and technological expertise, fostering clinical and industry partnerships, and enhancing the sharing of best practices, this program can significantly improve the health and quality of life for older adults with Alzheimer's disease (AD).

Dementia and Hearing Aid Use and Cessation: A National Study.

PURPOSE: The current standard for management of hearing loss in the United States involves the use of a hearing aid. Anecdotal evidence suggests that the use of a hearing aid may be less effective in the context of dementia, though national data on use and cessation are not described. METHOD: This longitudinal analysis of the National Health and Aging Trends Study followed participants who self-reported hearing aid use to estimate risk of hearing aid cessation over 9 years. We examine whether hearing aid cessation differs by dementia status using generalized estimating equations logistic regression accounting for loss to follow-up. Supplemental analyses were undertaken to examine the contribution of caregiving and environmental factors on hearing aid cessation. RESULTS: Of 1,310 older adults who reported hearing loss (25% 80-84 years, 51% women, 74% White), 22% with dementia and 57% baseline hearing aid use. Dementia increased likelihood of ceasing hearing aid use during the first year after adoption (OR = 2.07, 95% CI [1.33, 3.23], p interaction = .11). In later years, older adults with either a previous or recent diagnosis of dementia had a 95% higher odds of hearing aid cessation (OR = 1.95, 95% CI [1.31, 2.90]), a decrease in odds with respect to the first year after adoption, when compared to participants without dementia, after adjusting for demographic, health, and economic factors. Economic and social factors that may influence care demands (more caregivers, income-to-poverty ratio, and additional insurance) increased likelihood for cessation for those with dementia. CONCLUSIONS: Older adults with (vs. without) dementia are more likely to cease hearing aid use over time, most notably during the first year after adoption. Strategies to support hearing ability, such as self-management or care partner education, may improve communication for those living with co-occurring hearing loss and dementia.

Dementia care navigation: Building toward a common definition, key principles, and outcomes.

INTRODUCTION: As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient-, provider-, and systems-level barriers. Due to its high incidence, duration, and medical-social complexity, dementia is an ideal candidate for a patient-centric health care delivery model such as care navigation. METHODS: The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to identify evidence-based guidelines. RESULTS: Recognizing the unique and challenging needs of persons living with dementia and their care partners, several U.S. dementia care navigation programs have been developed and assessed in recent years. Collectively these programs demonstrate that persons living with dementia and their care partners benefit from dementia care navigation. Improved care system outcomes for the person living with dementia include reduced emergency department visits, lower hospital readmissions, fewer days hospitalized, and shorter delays in long-term care placement. Well-being is also increased, as there is decreased depression, illness, strain, embarrassment, and behavioral symptoms and increased self-reported quality of life. For care partners, dementia navigation resulted in decreased depression, burden, and unmet needs. DISCUSSION: This article presents principles of dementia care navigation to inform existing and emerging dementia care navigation programs. Highlights: Several U.S. dementia care navigation programs have demonstrated outcomes for persons living with dementia, care partners, and health systems.The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to create a shared definition and identify evidence-based guidelines or principles.These outlined principles of dementia care navigation can inform existing and emerging dementia care navigation programs.

"At least we finally found out what it was": Dementia diagnosis in minoritized populations.

BACKGROUND: Disparities in diagnosis persist among persons living with dementia (PLWD); most research on delayed diagnosis relies on medical records or administrative claims. This study aimed to identify factors that delay or facilitate dementia diagnoses in racial or ethnic minoritized PLWD and elicit care partner perspectives on timing and effects of diagnosis. METHODS: Maryland-based participants cared for a PLWD age 60 or older, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in-depth, semi-structured interviews were conducted and analyzed using conventional qualitative content analysis methods. RESULTS: Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family-initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms. CONCLUSIONS: Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems-level and community-led public health interventions may also help address disparities in brain health education and dementia diagnosis.

Medication Costs and Use of Older Americans in Assisted Living Settings: a Nationally Representative Cross-Sectional Study.

BACKGROUND: Assisted-living (AL) settings are an important residential care option for old and disabled Americans, but there are no national data characterizing medication use in AL. OBJECTIVE: To investigate medication costs and use of older adults living in the AL settings compared to those in the community, independent living, and nursing home settings. DESIGN: 2015 National Health and Aging Trends Study; nationally representative cross-sectional study. PATICIPANTS: Respondents ≥ 65 years with Medicare Part D prescription drug coverage (n = 5980, representing 32.34 million older adults). MEASURES: Total Part D medication costs; number of 30-day prescription fills; binary indicators for overall polypharmacy (≥ 5 and ≥ 10 concurrent medications), prescription fills of opioid and psychotropic medications including antipsychotics, benzodiazepines, gabapentinoids, antidepressants, and central nervous system-active (CNS-active) polypharmacy. RESULTS: Adjusting for demographics, the annual medication costs among AL residents, at $3890, were twice as high as those of their community-dwelling counterparts ($1932; p < .01). All medication outcomes except opioids were higher for older adults in AL compared to community settings. While the adjusted number of 30-day prescription fills among AL residents was slightly lower than that of nursing home residents (89.5 vs. 106.2; p < .05), AL residents experienced equivalent rates of overall polypharmacy ≥ 10 medications (30.2% vs. 23.5%), antipsychotics (30.8% vs. 27.8%), benzodiazepines (30.7% vs. 32.6%), gabapentinoids (21.2% vs. 16.1%), and CNS-active polypharmacy (26.0% vs. 36.9%; p > .05 for all). Patterns of use across settings were consistent when limited to older adults with dementia. CONCLUSIONS: Older Americans in AL experience a prescription medication burden similar to those in nursing homes. AL settings have an important opportunity to ensure their medication-related clinical services and supports match the needs of their residents.

The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia.

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.

The role of care partners in medical visits of older adults with hearing loss and dementia: A national study.

BACKGROUND: Dementia and hearing loss (HL) are conditions, which restrict communication ability and amplify the difficulty of implementing effective care coordination and communication with medical providers. We examined how the presence of HL and dementia influence communication with medical providers, and the role of involved care partners during medical visits. METHODS: Drawing on responses from 7070 community-dwelling older adults who participated in the 2015 National Health and Aging Trends Study, we used logistic regression to quantify care partner accompaniment to medical visits and the role care partners assume during visits by older adult hearing and dementia status. RESULTS: Nearly 4 in 10 older adults with dementia also reported HL. Eighty-two percent of older adults with both HL and dementia were accompanied to medical visits by a care partner. Those with HL and dementia were six times more likely to be accompanied by a care partner to medical visits than those with neither condition (OR: 6.04; 95% CI:4.06, 8.99). Care partners of older adults with both (vs neither) HL and dementia were more actively engaged in: (1) facilitating understanding between the older adult and doctor (OR: 4.55, 95% CI:2.68, 7.71); (2) asking or telling the doctor information (OR: 6.13, 95% CI:3.44, 10.9); and (3) reminding the older adult of their questions (OR: 2.52, 95% CI: 1.66, 3.83). CONCLUSIONS: Care partners have an active role during medical visits of older adults with HL and dementia. Efforts to support care partner engagement and teach advocacy skills may close gaps in care quality for the subgroup of older adults who are living with HL and dementia.

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program.

PURPOSE: We examine care partners' experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. METHOD: We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014-2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. FINDINGS: Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a "much needed break for care partners." Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. CONCLUSION: Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness.

Reasons for Hospitalization while Receiving Dementia Care Coordination through Maximizing Independence at Home.

OBJECTIVES: Persons living with dementia (PLWD), particularly those with higher levels of functional impairment, are at increased risk of hospitalization and higher hospital-associated health care costs. Our objective was to provide a nuanced description of reasons for hospitalizations over a 12-month period among community-living persons with dementia taking part in a dementia care coordination study using caregiver-reported data and to describe how reasons varied by disease stage. DESIGN: Retrospective descriptive analysis of pooled data from 2 concurrent studies of PLWD receiving the MIND at Home dementia care coordination program. SETTING AND PARTICIPANTS: Four hundred ninety-four community-dwelling PLWD with a family caregiver in the Greater Baltimore and Central Maryland region, 2015‒2019. METHODS: PLWD sociodemographic, clinical, functional, cognitive, and behavioral characteristics were assessed during an in-home baseline visit. Caregiver-reported hospitalizations and primary reasons for events were recorded every 4.5 months by research staff and by memory care coordinators during program delivery for a 12-month period. Hospitalization event data were subsequently reviewed, reconciled, and coded by a trained investigator. RESULTS: One hundred seventy PLWD (34.4%) had at least 1 hospitalization within 12 months of enrollment, with 316 separate events. The most common primary reason for hospitalization according to caregivers was infection (22.4%), falls (16.5%), and cardiovascular/pulmonary (12.4%). Top reasons for hospitalization were falls among persons with mild and moderate functional impairment (17.7% and 21.9% respectively) and infection among PLWD with severe impairment (30.3%). CONCLUSIONS AND IMPLICATIONS: Infections and falls were the most common caregiver-reported reasons for hospitalization in PLWD receiving dementia care coordination. Reasons for hospitalization varied based on severity of functional impairment. Greater understanding of reasons for hospitalization among PLWD receiving dementia care management interventions, from multiple important perspectives, may help programs more effectively address and prevent hospitalization.

Recruitment of a diverse research cohort in a large metropolitan area for dementia intervention studies.

The human and financial costs of dementia care are growing exponentially. Over five and a half million older Americans are estimated to be living with Alzheimer's disease and related dementia (ADRD). By 2050, this is expected to increase to over 13 million, and persons of color are at the highest risk. Considerable funds have been committed to research to prevent, treat, and care for persons at risk for ADRD. However, enrollment of research participants, particularly those coming from diverse backgrounds, is a perennial challenge and has serious implications. This paper quantitatively details the results of a community-based multi-modal outreach effort to recruit a racially diverse sample for non-pharmacological dementia intervention, including referral and participant sources and yield, total recruitment costs and cost per enrolled dyad, and a qualitative description of lessons learned, with particular attention to the recruitment of Black participants. The largest number of referrals and referrals converting to study participants, for both Black and White persons, were from a Maryland Department of Health mailing to Medicaid recipients. There was an important difference in the most effective strategies, proportionally, for white and Black participants. The MDH mailing had the highest yield for our Black referrals and participants, while professional referrals had the highest yield for white referrals and participants. The total estimated cost of recruitment was $101,058, or $156.19 per enrolled dyad. Ultimately 646 persons with dementia and care partner dyads were enrolled, 323 (50%) of whom were Black.

Acute care utilization risk among older adults living undiagnosed or unaware of dementia.

BACKGROUND: Dementia is associated with increased risk of hospitalization and emergency department (ED) visits. Many persons with dementia are undiagnosed or unaware of their diagnosis, however. Our objective was to determine whether undiagnosed dementia or unawareness affects risk of hospitalization or ED visits. METHODS: Retrospective longitudinal cohort study of 3537 community-living adults age ≥65 enrolled in the 2011-2017 National Health and Aging Trends Study with linked fee-for-service Medicare claims. Using self or proxy reported diagnosis, proxy dementia screening questionnaire, cognitive testing, and Medicare claims diagnosis, participants were classified as having (1) no dementia or dementia, for which they were classified as (2) undiagnosed, (3) diagnosed but unaware, or (4) diagnosed and aware. Proportional hazards models evaluated all-cause and potentially preventable hospitalization and ED visit risk by time-varying dementia status, adjusting for older adult characteristics. RESULTS: Most participants (n = 2879) had no dementia at baseline. Among participants with dementia at baseline (n = 658), 187 were undiagnosed, 300 diagnosed but unaware, and 171 diagnosed and aware. In multivariable adjusted proportional hazards models, persons with undiagnosed dementia had lower risk of hospitalization and ED visits compared to persons diagnosed and aware (all-cause hospitalization aHR 0.59 [0.44, 0.79] and ED visit aHR 0.63 [0.47, 0.85]) and similar risks of these outcomes compared to persons without dementia. Individuals diagnosed but unaware had greater risk compared to those without dementia: aHR 1.37 (1.18, 1.59) for all-cause hospitalization and 1.48 (1.28, 1.71) for ED visits; they experienced risk comparable to individuals diagnosed and aware. CONCLUSION: Older adults with undiagnosed dementia are not at increased risk of acute care utilization after accounting for differences in other characteristics. Individuals unaware of diagnosed dementia demonstrate risk similar to individuals aware of the diagnosis. Increasing diagnosis alone may not affect acute care utilization. The role of awareness warrants further investigation.

Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial.

BACKGROUND: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. METHODS: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator. DISCUSSION: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. TRIAL REGISTRATION: International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019.

'You can't just put somebody in a situation with no armour'. An ethnographic exploration of the training and support needs of homecare workers caring for people living with dementia.

BACKGROUND: Homecare workers carry out complex work with people living with dementia, while under-supported, undervalued and undertrained. In this ethnographic study, we explore the skills, training and support needs of homecare workers supporting people living with dementia. RESEARCH DESIGN AND METHODS: We conducted 82 interviews with people living with dementia (n = 11), family caregivers (n = 22), homecare staff (n = 30) and health and social care professionals (n = 19) and conducted 100-hours of participant observations with homecare workers (n = 16). We triangulated interview and observational findings and analysed data thematically. RESULTS: We developed four themes: 1) 'Navigating the homecare identity and role': describing challenges of moving between different role identities and managing associated expectations, 2) 'Developing and utilising relational and emotional skills': boundaries between caring and getting emotionally involved felt blurred and difficult to manage, 3) 'Managing clients who resist care': homecare workers experienced clients' reactions as challenging and felt "thrown to the wolves" without sufficient training, and 4) 'Drawing on agency and team support': homecare work could be isolating, with no shared workplace, busy schedules and limited opportunity for peer support. DISCUSSION AND IMPLICATIONS: It is important that training and support for homecare workers addresses the relational, emotional and rights-based aspects of the role. Where a flexible, responsive, person-centred service is required, corresponding training and support is needed, alongside organisational practices, taking account of the broader context of the homecare sector.

A longitudinal evaluation of family caregivers' willingness to pay for an in-home nonpharmacologic intervention for people living with dementia: results from a randomized trial.

OBJECTIVE: To determine the willingness-to-pay (WTP) of family caregivers to learn care strategies for persons living with dementia (PLwD). DESIGN: Randomized clinical trial. SETTING: Community-dwelling PLwD and their caregivers (dyads) in Maryland and Washington, DC. PARTICIPANTS: 250 dyads. INTERVENTION: Tailored Activity Program (TAP) compared to attention control. TAP provides activities tailored to the PLwD and instructs caregivers in their use. MEASUREMENT: At baseline, 3 and 6 months, caregivers were asked their WTP per session for an 8-session 3-month in-home nonpharmacologic intervention to address behavioral symptoms and functional dependence. RESULTS: At baseline, 3 and 6 months, caregivers assigned to TAP were willing to pay $26.10/session (95%CI:$20.42, $33.00), $28.70 (95%CI:$19.73, $39.30), and $22.79 (95%CI: $16.64, $30.09), respectively; attention control caregivers were willing to pay $37.90/session (95%CI: $27.10, $52.02), $30.92 (95%CI: $23.44, $40.94), $27.44 (95%CI: $20.82, $35.34), respectively. The difference in baseline to 3 and 6 months change in WTP between TAP and the attention control was $9.58 (95%CI: -$5.00, $25.47) and $7.15 (95%CI: -$5.72, $21.81). The difference between TAP and attention control in change in the proportion of caregivers willing to pay something from baseline to 3 and 6 months was -12% (95%CI: -28%, -5%) and -7% (95%CI:-25%, -11%), respectively. The difference in change in WTP, among caregivers willing to pay something, between TAP and attention control from baseline to 3 and 6 months was $17.93 (95%CI: $0.22, $38.30) and $11.81 (95%CI: -$2.57, $28.17). CONCLUSIONS: Family caregivers are willing to pay more for an intervention immediately following participation in a program similar to which they were asked to value.

Developing Treatments for Alzheimer's and Related Disorders with Precision Medicine: A Vision.

Precision medicine, also known as personalized medicine, is concerned with finding the right treatment for the right patient at the right time. It is a way of thinking focused on parsing heterogeneity ultimately down to the level of the individual. Its main mission is to identify characteristics of heterogeneous clinical conditions so as to target tailored therapies to individuals. Precision Medicine however is not an agnostic collection of all manner of clinical, genetic and other biologic data in select cohorts. This is an important point. Simply collecting as much information as possible on individuals without applying this way of thinking should not be considered Precision Medicine.

Establishment of a Patient-Centered Outcomes Research Network for Individuals with TBI and Neuropsychiatric Symptoms.

Aims: The overarching goal of this project was to establish a group comprised of a variety of TBI stakeholders for the purpose of: (1) determining facilitators and barriers in management of neuropsychiatric symptoms after TBI; (2) identifying strategies for maintaining a TBI PCOR network; (3) enumerating research topics related to TBI neuropsychiatry; and (4) highlighting policy changes related to TBI neuropsychiatry.Methods: Twenty-nine TBI stakeholders participated in focus group discussions. Qualitative analyses were conducted both manually and using Dedoose software.Results: Participant-identified barriers included stigma associated with experiencing neuropsychiatric symptoms and poor insurance coverage. Facilitators included treatment focused on education of neuropsychiatric symptoms after TBI and having a comprehensive caregiver plan. Best strategies for maintaining TBI PCOR network included having a well-defined project, continued regular meetings, and on-going education of network members. Pertinent research topics included TBI and aging, factors influencing outcomes after TBI, substance use disorders related to TBI, and effectiveness of telemental health services. Needed policy changes included making TBI neuropsychiatry education accessible to stakeholders and improving accessibility of TBI neuropsychiatric care.Conclusion: TBI stakeholders identified several facilitators of care for neuropsychiatric symptoms after TBI and suggested research topics and best practices for conducting PCOR in this area.