Are We Talking About the Same Thing? Black/African Americans' Response to the BRFSS Cognitive Decline and Caregiver Modules.

The Behavioral Risk Factor Surveillance System (BRFSS) is a randomized national U.S. telephone survey administered by state health departments. This study aimed to identify how Black/African Americans understand BRFSS caregiver and cognitive decline surveys and terminology to inform health messaging that centers the Black/African American experience. In focus groups, BRFSS surveys were administered to Black/African Americans (n = 30) aged ≥ 45 in Oregon. Participants were asked how they interpreted BRFSS terms 'memory loss' and 'confusion,' how these terms related to Alzheimer's and dementia, and about caregiving and cognitive decline experiences. The culturally responsive Africana Worldview guided interpretation, which centers the Black/African American experience and individuals within interdependent relationships and community identity when explaining behaviors of people from the African diaspora. BRFSS survey responses differed from focus group responses to the same questions. Two participants reported providing care in the past two years on the survey; in discussions, 21 participants reported providing care in the past two years. Interpretations of BRFSS terminology varied greatly. Differences between age-related cognitive changes, dementia and Alzheimer's disease were unclear. Cognitive decline was largely understood in terms of identity loss and relationship changes with the affected individual, and how that individual's relationship changed within community. Caution is advised when using BRFSS data to frame messaging because key cognitive health terms are not universally understood. Messaging that apply the Africana Worldview centralizes relationships and community rather than impact on individual's day-to-day activities, may be more effective for Black/African Americans and for other groups with different cultural and life experiences.

Will My Soul Go to Heaven If They Take My Brain? Beliefs and Worries About Brain Donation Among Four Ethnic Groups.

Purpose of the Study: Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Design and Methods: Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. Results: We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain research and the process of brain removal, (b) religious beliefs, and (c) the role of the family. Implications: Our findings suggest that interventions to enhance enrollment in brain donation that target factors identified in this study are likely to be relevant to people from a broad range of backgrounds and ethnicities. Nonetheless, we observed some potential differences among racial/ethnic groups that may affect how research volunteers and their families approach a decision about donating their brain for research. Further study is warranted to explore these and other possible culturally distinct attitudes and beliefs about brain donation.

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups.

INTRODUCTION: Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. METHODS: African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. RESULTS: Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy. DISCUSSION: The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.

A qualitative study of rural primary care clinician views on remote monitoring technologies.

PURPOSE: Remote monitoring technologies (RMTs) may improve the quality of care, reduce access barriers, and help control medical costs. Despite the role of primary care clinicians as potential key users of RMTs, few studies explore their views. This study explores rural primary care clinician interest and the resources necessary to incorporate RMTs into routine practice. METHODS: We conducted 15 in-depth interviews with rural primary care clinician members of the Oregon Rural Practice-based Research Network (ORPRN) from November 2011 to April 2012. Our multidisciplinary team used thematic analysis to identify emergent themes and a cross-case comparative analysis to explore variation by participant and practice characteristics. RESULTS: Clinicians expressed interest in RMTs most relevant to their clinical practice, such as supporting chronic disease management, noting benefits to patients of all ages. They expressed concern about the quantity of data, patient motivation to utilize equipment, and potential changes to the patient-clinician encounter. Direct data transfer into the clinic's electronic health record (EHR), availability in multiple formats, and review by ancillary staff could facilitate implementation. Although participants acknowledged the potential system-level benefits of using RMTs, adoption would be difficult without payment reform. CONCLUSIONS: Adoption of RMTs by rural primary care clinicians may be influenced by equipment purpose and functionality, implementation resources, and payment. Clinician and staff engagement will be critical to actualize RMT use in routine primary care.

African refugee and immigrant health needs: report from a community-based house meeting project.

BACKGROUND: As in other communities in the United States, information is lacking about the health needs of Africans refugees and immigrants living in Portland, Oregon. In 2008, the African Partnership for Health coalition (APH) was formed to carry out research, advocacy and education to improve the health and well-being of Africans in Oregon. This was APH's initial project. OBJECTIVES: The purposes of this study were to gather data about the perceived health needs and barriers to health care Africans encounter, and lay the foundation for a program of action to guide APH's future work. METHODS: Community-based participatory research (CBPR) methods were used to collect data on how to improve the health of the African community in the Portland area and define an agenda for future projects. Popular education principles guided the engagement and training of African community members, who conducted nine house meetings with 56 Africans from 14 countries. The results were analyzed by African community members and researchers and prioritized at a community meeting. RESULTS: Three themes emerged: The stressfulness of life in America, the challenges of gaining access to health care, and the pervasive feelings of disrespect and lack of understanding of Africans' health needs, culture, and life experiences by health providers and staff members. CONCLUSION: Using CBPR methods, we identified and prioritized the needs of the African community. This information provides a framework for future work of the African Partnership for Health and other service and advocacy groups.

Willingness of older adults to share data and privacy concerns after exposure to unobtrusive in-home monitoring.

Older adult participants in the Intelligent Systems for Assessment of Aging Changes study (ISAAC) carried out by the Oregon Center for Aging and Technology (ORCATECH) were surveyed regarding their attitudes about unobtrusive home monitoring and computer use at baseline and after one year (n=119). The survey was part of a longitudinal study using in-home sensor technology to detect cognitive changes and other health problems. Our primary objective was to measure willingness to share health or activity data with one's doctor or family members and concerns about privacy or security of monitoring over one year of study participation. Differences in attitudes of participants with Mild Cognitive Impairment (MCI) compared to those with normal cognition were also examined. A high proportion (over 72%) of participants reported acceptance of in-home and computer monitoring and willingness to have data shared with their doctor or family members. However, a majority (60%) reported concerns related to privacy or security; these concerns increased after one year of participation. Few differences between participants with MCI and those with normal cognition were identified. Findings suggest that involvement in this unobtrusive in-home monitoring study may have raised awareness about the potential privacy risks of technology. Still, results show high acceptance, stable over time, of sharing information from monitoring systems with family members and doctors. Our findings have important implications for the deployment of technologies among older adults in research studies as well as in the general community.

Intelligent Systems For Assessing Aging Changes: home-based, unobtrusive, and continuous assessment of aging.

OBJECTIVES: To describe a longitudinal community cohort study, Intelligent Systems for Assessing Aging Changes, that has deployed an unobtrusive home-based assessment platform in many seniors homes in the existing community. METHODS: Several types of sensors have been installed in the homes of 265 elderly persons for an average of 33 months. Metrics assessed by the sensors include total daily activity, time out of home, and walking speed. Participants were given a computer as well as training, and computer usage was monitored. Participants are assessed annually with health and function questionnaires, physical examinations, and neuropsychological testing. RESULTS: Mean age was 83.3 years, mean years of education was 15.5, and 73% of cohort were women. During a 4-week snapshot, participants left their home twice a day on average for a total of 208 min per day. Mean in-home walking speed was 61.0 cm/s. Participants spent 43% of days on the computer averaging 76 min per day. DISCUSSION: These results demonstrate for the first time the feasibility of engaging seniors in a large-scale deployment of in-home activity assessment technology and the successful collection of these activity metrics. We plan to use this platform to determine if continuous unobtrusive monitoring may detect incident cognitive decline.

Internet-Based Dementia Resources: Physician Attitudes and Practices.

Despite the potential of the internet for informing clinical practice, little is know about physicians' use of and attitudes about internet use for dementia care. We surveyed 373 physicians to inform development of on-line dementia education resources. Two thirds reported using internet-based resources in their clinical practices at least three times per week; 61% participated in on-line continuing medical education. Three fourths agreed that internet-based resources are helpful in clinical care but most expressed mixed views about quality of available information. Respondents reported limited awareness and use of dementia-specific internet resources, but expressed an interest in such information regarding screening, treatment, community resources, and patient education. National Institute on Aging-funded Alzheimer's Disease Centers are in a unique position to disseminate on-line resources for physicians on dementia diagnosis, treatment, and care. Our study suggests that such a resource would be well received and utilized by physicians.

The rural older adult memory (ROAM) study: a practice-based intervention to improve dementia screening and diagnosis.

INTRODUCTION: The aim of the Rural Older Adult Memory (ROAM) pilot study was to evaluate the feasibility of screening and diagnosing dementia in patients aged 75 years or older in 6 rural primary care practices in a practice-based research network. METHODS: Clinicians and medical assistants were trained in dementia screening using the ROAM protocol via distance learning methods. Medical assistants screened patients aged 75 years of age and older. For patients who screened positive, the clinician was alerted to the need for a dementia work-up. Outcomes included change in the proportion of patients who were screened and diagnosed with dementia or mild cognitive impairment, clinician confidence in diagnosing and managing dementia, and response to the intervention. RESULTS: Results included a substantial increase in screening for dementia, a modest increase in the proportion of patients who were diagnosed with dementia or mild cognitive impairment, and improved clinician confidence in diagnosing dementia. Although clinicians and medical assistants found the ROAM protocol easy to implement, there was substantial variability in adherence to the protocol among the 6 practices. CONCLUSION: This study demonstrated the complex issues that must be addressed in implementing a dementia screening process in rural primary care. Further study is needed to develop effective strategies for overcoming the factors that impeded the full uptake of the protocol, including the logistic challenges in implementing practice change and clinicians' attitudes toward dementia screening and diagnosis.

Predictors of physician referral for patient recruitment to Alzheimer disease clinical trials.

BACKGROUND: Inadequate recruitment into Alzheimer disease clinical trials is an important threat to the validity and generalizability of the studies. The majority of dementia patients are first evaluated by community-based physicians; however, physician perceptions of clinical research are largely unknown. METHODS: A survey was distributed to 3123 physicians in 3 states; 370 were returned. Survey items assessed attitudes, perceived benefits of and barriers to referral to clinical research, and physicians use of the internet for medical information. RESULTS: The mean age of the respondents was 50.6+/-10.8 years; 70% were male, 78% white, 61% were primary care providers; 63% used the internet > or =3 times/week. No demographic or medical specialty differences existed between those who were likely (n=193) and unlikely (n=162) to refer patients to clinical trials. Differences were discovered in perceived benefits reported by physicians who were more likely to refer, whereas differences in perceived barriers existed in primary care compared with specialists. Referral to clinical trials is predicted by close proximity to a research center [odds ratio (OR): 4.0; 95% confidence interval (CI), 1.1-15.6] and availability of internet information regarding diagnostic evaluation (OR: 2.3; 95% CI, 1.1-4.7). Primary barriers included concerns about exposure of patients to uncomfortable procedures (OR: 4.7; 95% CI, 1.2-18.7) and lack of time to discuss research participation (OR: 6.8; 95% CI, 1.4-32.3). CONCLUSIONS: Proximity to a research center and availability of diagnostic clinical tools are strong predictors of clinical trial referral. Concern over risks to patients and lack of time are strong barriers. These results suggest that dementia outreach education targeted to physicians should emphasize the importance of clinical trials with a focus on discussing research participation in a time-efficient manner and increasing awareness of risk reduction and the safety of research protocols. Providing easy access to up-to-date, user-friendly educational materials on dementia diagnosis and research via the internet are likely to improve referrals of patients to Alzheimer disease clinical trials from community physicians.

Unobtrusive In-Home Monitoring of Cognitive and Physical Health: Reactions and Perceptions of Older Adults.

While the potential benefits of unobtrusive in-home sensing technologies for maintaining health and independence of older adults have been highlighted in recent research, little is known about their views toward such technology. The aims of this project were to identify monitoring needs and expectations of community-residing elderly and their family members. Focus groups were presented with examples of in-home monitoring devices and data output; participants were asked to consider whether the data showed information that was meaningful to them, and how and to whom they would like to have such data disseminated. Content analysis of transcripts revealed four dominant themes: maintaining independence, detecting cognitive decline, sharing of information, and the tradeoff between privacy and usefulness of monitoring. The acceptance by elderly of unobtrusive in-home monitoring was closely tied to perceived utility of data generated by such systems. Privacy concerns appeared to be less of an issue than anticipated in this sample.

Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians.

PURPOSE: This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. DESIGN AND METHODS: Seventeen focus group interviews were conducted with caregivers or physicians from three sites; 52 caregivers participated in nine interviews (three each at the three sites), and 39 physicians participated in eight interviews (three each at two sites; two at one site). Structured interview protocols were used to assess diagnostic disclosure, first reactions, and suggestions for improving the diagnostic process. RESULTS: Caregivers recounted a highly negative emotional response to the disclosure, whereas many physicians reported that families handled the information well. Caregivers expressed a range of preferences for how the diagnosis should have been disclosed, from a direct approach to having the physician ease them into the results. IMPLICATIONS: Whenever possible, physicians should consult with the patient and family at the outset of the diagnostic process to better understand their preferences for diagnostic disclosure. Addressing diagnostic disclosure as part of physician education programs on dementia is recommended.

The family's role in person-centered care: practice considerations.

Effective implementation of person-centered care requires a shared understanding and commitment to make it a reality by administrative personnel, direct care providers, and residents and their family members. Long-term care facilities must seek ways to engage residents' families in person-centered care through its training, policies, care planning, and documentation. Doing so may require revisions to policies and work practices, and ongoing leadership efforts to maintain this care framework within the realities of staff turnover and regulatory requirements. Developing protocols and procedures that facilitate family members' communication with staff and build consensus and shared values will result in a system that represents and honors the unique perspectives, values, and needs of each resident receiving care. It is important for facility leadership to set the tone for acknowledging the importance of family involvement in person-centered care by modeling acceptance of concerns and criticisms as valid and by acknowledging that direct care providers, residents, and their family members have a voice in care decisions. Such an approach has the greatest chance of success in promoting person-centered care and the shared values necessary to ensure its successful implementation.

Dementia assessment in primary care: results from a study in three managed care systems.

BACKGROUND: Prior research has found that dementia is often undiagnosed in primary care, but there has been limited research on whether physicians respond to symptoms, behaviors, or other events that may be indicators of dementia. METHODS: A cross-sectional cohort study design was used to screen 553 patients aged 75 years or older for dementia in 3 managed health care systems in Portland, Oregon. For participants determined to be cognitively impaired, their medical charts were reviewed to determine if they had experienced adverse events, had been clinically evaluated for possible dementia, had received a diagnosis of dementia, or had been offered treatment. RESULTS: Nearly 43% of participants were identified as cognitively impaired: 29.7% were classified as mildly cognitively impaired (MI) and 13.7% as moderately to severely cognitively impaired (MSI). Eighteen percent of the MI group and 34.8% of the MSI group had evidence in their medical chart of having been clinically evaluated for dementia. None of the MI group and only 4.3% of the MSI group had been offered a cholinesterase inhibitor. Nearly two thirds (61.6%) of the MI and three fourths (75.4%) of the MSI participants had experienced 1 or more adverse events. Of those who had experienced adverse events, less than one quarter (23.7%) in the MI group and less than one half (44.2%) in the MSI group had received a clinical evaluation for dementia. CONCLUSIONS: These findings suggest the need for greater attention by primary care physicians to the cognitive functioning of older patients, especially patients who experience adverse events that may be indicators of dementia.