Unique Care Needs of People with Dementia and Their Caregivers during Transitions from Skilled Nursing Facilities to Home and Assisted Living: A Qualitative Study.

OBJECTIVES: The purpose of the study was to describe unique care needs of people with dementia (PWD) and their caregivers during transitions from skilled nursing facilities (SNF) to home. DESIGN: A qualitative study using focus groups, semistructured interviews, and descriptive qualitative analysis. SETTING AND PARTICIPANTS: The study was set in one state, in 4 SNFs where staff had experience using a standardized transitional care protocol. The sample included 22 SNF staff, 4 home health nurses, 10 older adults with dementia, and their 10 family caregivers of whom 39 participated in focus groups and/or interviews. METHODS: Data collection included 4 focus groups with SNF staff and semistructured interviews with home health nurses, SNF staff, PWD, and their family caregivers. Standardized focus group and interview guides were used to elicit participant perceptions of transitional care. We used the framework analytic approach to qualitative analysis. A steering committee participated in interpretation of findings. RESULTS: Participants described 4 unique care needs: (1) PWD and caregivers may not be ready to fully engage in dementia care planning while in the SNF, (2) caregivers are not prepared to manage dementia symptoms at home, (3) SNF staff have difficulty connecting PWD and caregivers to community supports, and (4) caregivers receive little support to address their own needs. CONCLUSIONS AND IMPLICATIONS: Based on findings, recommendations are offered for adapting transitional care to address the needs of PWD and their caregivers. Further research is needed (1) to confirm these findings in larger, more diverse samples and (2) to adapt and test interventions to support successful community discharge of PWD and their caregivers.

Partnering to cope with pain: A pilot study of a caregiver-assisted pain coping skills intervention for patients with cognitive impairment and dementia.

OBJECTIVE: To develop a new caregiver-assisted pain coping skills training protocol specifically tailored for community-dwelling persons with cognitive impairment and pain, and assess its feasibility and acceptability. METHOD: In Phase I, we conducted interviews with 10 patient-caregiver dyads to gather feedback about intervention content and delivery. Phase II was a single-arm pilot test to evaluate the intervention's feasibility and acceptability. Dyads in the pilot study (n = 11) completed baseline surveys, received five intervention sessions, and then completed post-intervention surveys. Analyses focused on feasibility and acceptability. RESULTS: Dyads responded positively to the pain coping skills presented in the interviews; their feedback was used to refine the intervention. Findings from the pilot study suggested that the intervention was feasible and acceptable. 69% of eligible dyads consented, 82% completed all five intervention sessions, and 100% completed the post-treatment assessment. Caregivers reported high satisfaction ratings. They also reported using the pain coping skills on a regular basis, and that they found most of the skills helpful and easy to use. SIGNIFICANCE OF RESULTS: These preliminary findings suggest that a caregiver-assisted pain coping skills intervention is feasible and acceptable, and that it may be a promising approach to managing pain in patients with cognitive impairment.

Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies.

INTRODUCTION: The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and "research ready" cohort of cognitively healthy volunteers. METHODS: The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines. RESULTS: The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures. DISCUSSION: We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies.

Helping Dementia Caregivers Manage Medical Problems: Benefits of an Educational Resource.

BACKGROUND/RATIONALE: Family caregivers of people with dementia must attend to medical care needs of their relative, yet few available resources address comorbidities in dementia. Consequently, caregivers feel ill-equipped when medical concerns arise. In response, an educational resource-Alzheimer's Medical Advisor ( AlzMed)-was developed in 2 forms (website and book) and evaluated. METHODS: Family caregivers (143 website and 51 book) used an educational resource that provides information on medical problems, vital signs, pain, dehydration, and the healthcare system. Data were collected at baseline, 3 months, and 6 months regarding confidence in sign/symptom management, burden, depression, and anxiety. RESULTS: Caregivers reported significantly improved confidence and (for website users) decreased role strain. Anxiety and depression also decreased, although not significantly. Improved confidence related to a reduction in role strain and anxiety, and care recipients did not experience adverse events. CONCLUSION: An educational resource focusing on care of comorbid illness may benefit caregiver outcomes.

Innovation in care for individuals with cognitive impairment: Can reimbursement policy spread best practices?

There is now an unprecedented opportunity to improve the care of the over 5 million people who are living with Alzheimer's disease and related dementias and many more with cognitive impairment due to brain injury, systemic diseases, and other causes. The introduction of a new Medicare care planning benefit-long sought openly by advocacy organizations and clinicians and badly needed by patients and families-could greatly improve health care quality, but only if widely and fully implemented. We describe the components of this new benefit and its promise of better clinical care, as well as its potential to create a new platform for clinical and health outcomes research. We highlight external factors-and some that are internal to the benefit structure itself-that challenge the full realization of its value, and we call for broad public and professional engagement to ensure that it will not fail.

New or Worsening Symptoms and Signs in Community-Dwelling Persons with Dementia: Incidence and Relation to Use of Acute Medical Services.

OBJECTIVES: To understand the range of symptoms that present to family caregivers of community-dwelling persons with Alzheimer's disease and related dementias (ADRD). DESIGN: Six-month longitudinal prospective study to identify the incidence of new or worsening symptoms and their association with acute care medical service use. SETTING: Community-based sample of volunteers from multiple states. PARTICIPANTS: A total of 136 patient-caregiver dyads with a range of dementia severity. MEASUREMENTS: Forty four symptoms and signs common in older persons and/or persons with dementia; frequency of emergency department visits, hospitalizations, and death; and associations between reported symptoms and acute medical care. RESULTS: During a mean of 5.7 months' follow-up, new or worsening organ-specific (90% of participants), nonspecific (89%), and behavioral (88%) symptoms were common, with the average caregiver reporting seven new or worsening symptoms. Most common were worsening confusion (74%), decreased activity (64%), agitation (57%), hallucinations/delusions (45%), voice and speaking problems (45%), not eating or drinking (44%), and stress/anxiety (41%). Hospitalization and emergency department use occurred respectively in 19% and 20% of participants, and were associated with organ-specific symptoms (OR 3.15, P = .02), less so with nonspecific symptoms (OR 2.27, P = .07), and very little with behavioral symptoms (OR 1.44, P = .38). Within each symptom category, certain symptoms were significantly associated with acute medical service use. CONCLUSION: Family caregivers of persons with ADRD must respond to a variety of medical, nonspecific, and behavioral symptoms. The high incidence of new or worsening symptoms and of acute medical care use suggests a need to better target symptom evaluation and management in caregiver education.

Age-Friendly Communities Initiative: Public Health Approach to Promoting Successful Aging.

Older adults consistently prefer aging in place, which requires a high level of community support and services that are currently lacking. With a rapidly aging population, the present infrastructure for healthcare will prove even more inadequate to meet seniors' physical and mental health needs. A paradigm shift away from the sole focus on delivery of interventions at an individual level to more prevention-focused, community-based approaches will become essential. Recent initiatives have been proposed to promote healthy lifestyles and preventive care to enable older adults to age in place. Prominent among these are the World Health Organization's Global Age-Friendly Communities (AFC) Network, with 287 communities in 33 countries, and AARP's Network of AFCs with 77 communities in the United States. In an AFC, older adults are actively involved, valued, and supported with necessary infrastructure and services. Specific criteria include affordable housing, safe outdoor spaces and built environments conducive to active living, inexpensive and convenient transportation options, opportunities for social participation and community leadership, and accessible health and wellness services. Active, culture-based approaches, supported and developed by local communities, and including an intergenerational component are important. This article provides a brief historical background, discusses the conceptualization of the AFC, offers a list of criteria, narrates case studies of AFCs in various stages of development, and suggests solutions to common challenges to becoming age-friendly. Academic geriatric psychiatry needs to play a major role in the evolving AFC movement to ensure that mental healthcare is considered and delivered on par with physical care.

Report on milestones for care and support under the U.S. National Plan to Address Alzheimer's Disease.

INTRODUCTION: Under the U.S. national Alzheimer's plan, the National Institutes of Health identified milestones required to meet the plan's biomedical research goal (Goal 1). However, similar milestones have not been created for the goals on care (Goal 2) and support (Goal 3). METHODS: The Alzheimer's Association convened a workgroup with expertise in clinical care, long-term services and supports, dementia care and support research, and public policy. The workgroup reviewed the literature on Alzheimer's care and support; reviewed how other countries are addressing the issue; and identified public policies needed over the next 10 years to achieve a more ideal care and support system. RESULTS: The workgroup developed and recommended 73 milestones for Goal 2 and 56 milestones for Goal 3. DISCUSSION: To advance the implementation of the U.S. national Alzheimer's plan, the U.S. government should adopt these recommended milestones, or develop similar milestones, to be incorporated into the national plan.

From evidence to practice: using the RE-AIM framework to adapt the REACHII caregiver intervention to the community.

This article describes how the multi-step mid-course assessment of the REACH II community translation project in North Carolina was guided by the RE-AIM framework, and summarizes adaptations made to enhance the feasibility of adoption and maintenance while at the same time assuring fidelity to program core elements. The two-stage assessment involved both quantitative (survey) and qualitative (discussion group) components. Results indicated a need to focus primarily on tailoring pre-intervention training, streamlining and clarifying intervention guides and tools, targeting specific participant recruitment messages, addressing issues of session length, and clarifying what flexibilities family consultants could exercise in terms of specific session content addressed and other supportive materials used. The use of the RE-AIM framework and the mixed-method process allowed the program staff to thoroughly assess program satisfaction and areas of concern, and ultimately ensured that the family consultants implementing the intervention had a voice in the adaptation process.

Community engagement in diverse populations for Alzheimer disease prevention trials.

The recruitment of asymptomatic volunteers has been identified as a critical factor that is delaying the development and validation of preventive therapies for Alzheimer disease (AD). Typical recruitment strategies involve the use of convenience samples or soliciting participation of older adults with a family history of AD from clinics and outreach efforts. However, high-risk groups, such as ethnic/racial minorities, are traditionally less likely to be recruited for AD prevention studies, thus limiting the ability to generalize findings for a significant proportion of the aging population. A community-engagement approach was used to create a registry of 2311 research-ready, healthy adult volunteers who reflect the ethnically diverse local community. Furthermore, the registry's actual commitment to research was examined, through demonstrated participation rates in a clinical study. The approach had varying levels of success in establishing a large, diverse pool of individuals who are interested in participating in pharmacological prevention trials and meet the criteria for primary prevention research trials designed to delay the onset of AD. Our efforts suggest that entry criteria for the clinical trials need to be carefully considered to be inclusive of African Americans, and that sustained effort is needed to engage African Americans in pharmacological prevention approaches.

Dementia in relation to family caregiver involvement and burden in long-term care.

To better understand the process and outcomes of family involvement for long-term care residents with varying stages of dementia, we analyzed family and staff data for 467 residents of 24 residential care/assisted living and nursing-home settings. Adjusted analyses found that although the amount of family visitation did not significantly vary by resident cognitive status (15 versus 20 visits/month to persons with and without dementia, respectively), the nature of the visit did. Families of cognitively intact residents spent more time in activities related to social and community engagement, such as taking residents on trips and calling and writing letters (p<.001), while families of more impaired residents spent more time on care-related activities, including tasks related to nutrition (p<.027), mobility (p=.001), and discussing care with staff (p=.007), the latter of which was associated with greater burden (p<.001). Staff identified similar patterns but perceived less family involvement.

Differences in assisted living staff perceptions, experiences, and attitudes.

Research within residential care/assisted living (RC/AL) settings has shown that the attitudes of personal care (PC) staff toward their organization and its residents and families can affect the quality of resident care. This article describes the perceptions, experiences, and attitudes of PC staff and their supervisors, and considers these data in the context of non-hierarchical staffing patterns-a philosophically expected, yet unproven tenet of RC/AL. Using data collected from 18 RC/AL communities, these analyses compared the characteristics, perceptions, experiences, and attitudes of PC staff (N = 250) and supervisors (N = 30). Compared to supervisors, PC staff reported greater burden, frustration, depersonalization, hassles, and feeling significantly more controlling of, and less in partnership with, families (p < 0.05). Because the PC staff experience is crucial for resident outcomes, more work is needed to create an environment where PC staff are less burdened and have better attitudes toward work and families.

Fidelity Decision Making in Social and Behavioral Research: Alternative Measures of Dose and Other Considerations.

This article advances the discussion of treatment fidelity in social and behavioral intervention research by analyzing fidelity in an intervention study conducted within participating long-term care settings of the Collaborative Studies of Long-Term Care. The authors used the Behavior Change Consortium's (BCC) best practices for enhancing treatment fidelity recommendations in the areas of study design, provider training, treatment delivery, treatment receipt, and treatment enactment to evaluate fidelity-related decisions. Modifications to the original fidelity strategies were necessary in all areas. The authors revised their dose score and compared it with two constructed alternative measures of fidelity. Testing alternative measures and selecting the best measure post hoc allowed them to observe chance differences in relationship to outcomes. When the end result is to translate behavioral interventions into real practice settings, it is clear that some degree of flexibility is needed to ensure optimal delivery. Based on the relationship of program elements to the outcomes, a multicomponent intervention dose measure was more appropriate than one related to individual elements alone. By assessing the extent to which their strategies aligned with the BCC recommendations, the authors offer an opportunity for social work researchers to learn from their challenges and decision-making process to maximize fidelity.

Comparing families and staff in nursing homes and assisted living: implications for social work practice.

Nursing homes and residential care/assisted living settings provide care to 2.4 million individuals. Few studies compare the experience of, and relationships between, family and staff in these settings, despite ongoing family involvement and evidence that relationships are problematic. Data from 488 families and 397 staff members in 24 settings examined family involvement and family and staff burden, depressive symptoms, and perceptions; and staff absenteeism and turnover. There were few differences across setting types. Although conflict rarely occurred, there was room for improvement in family-staff relations; this area, and preparing family for their caregiving roles, are appropriate targets for social work intervention.

Families Matter in Long-Term Care: Results of a Group-Randomized Trial.

This group-randomized trial implemented and evaluated an intervention to reduce staff burden and improve family and resident outcomes by helping families create meaningful roles for themselves in residential care/assisted living and nursing homes. Across 24 sites, families (N = 490) and staff (N = 397) provided data over six months about family involvement, family and staff well-being and attitudes, and resident quality of life. Intervention subjects participated in workshops and created service plans to identify family roles. For families, the intervention decreased burden and improved resident quality of life but also increased guilt and conflict. Staff reported less burnout and greater partnership with families, and felt families were more empathic. Consequently, there are benefits to increasing family involvement, but attention must be paid to potential barriers and negative outcomes.

Advancing Alzheimer's disease diagnosis, treatment, and care: recommendations from the Ware Invitational Summit.

To address the pending public health crisis due to Alzheimer's disease (AD) and related neurodegenerative disorders, the Marian S. Ware Alzheimer Program at the University of Pennsylvania held a meeting entitled "State of the Science Conference on the Advancement of Alzheimer's Diagnosis, Treatment and Care," on June 21-22, 2012. The meeting comprised four workgroups focusing on Biomarkers; Clinical Care and Health Services Research; Drug Development; and Health Economics, Policy, and Ethics. The workgroups shared, discussed, and compiled an integrated set of priorities, recommendations, and action plans, which are presented in this article.

Video-based coping skills to reduce health risk and improve psychological and physical well-being in Alzheimer's disease family caregivers.

OBJECTIVE: To determine whether video-based coping skills (VCS) training with telephone coaching reduces psychosocial and biological markers of distress in primary caregivers of a relative with Alzheimer's disease or related dementia (ADRD). METHODS: A controlled clinical trial was conducted with 116 ADRD caregivers who were assigned, alternately as they qualified for the study, to a Wait List control condition or the VCS training arm in which they viewed two modules/week of a version of the Williams LifeSkills Video adapted for ADRD family care contexts, did the exercises and homework for each module presented in an accompanying Workbook, and received one telephone coaching call per week for 5 weeks on each week's two modules. Questionnaire-assessed depressive symptoms, state and trait anger and anxiety, perceived stress, hostility, caregiver self-efficacy, salivary cortisol across the day and before and after a stress protocol, and blood pressure and heart rate during a stress protocol were assessed before VCS training, 7 weeks after training was completed, and at 3 months' and 6 months' follow-up. RESULTS: Compared with controls, participants who received VCS training plus telephone coaching showed significantly greater improvements in depressive symptoms, trait anxiety, perceived stress, and average systolic and diastolic blood pressures that were maintained over the 6-month follow-up period. CONCLUSIONS: VCS training augmented by telephone coaching reduced psychosocial and biological indicators of distress in ADRD caregivers. Future studies should determine the long-term benefits to mental and physical health from this intervention. TRIAL REGISTRATION: http://www.clinicaltrials.gov; #NCT00396825.

Challenges and opportunities: recruitment and retention of African Americans for Alzheimer disease research: lessons learned.

For more than 3 decades, the recruitment and retention of African Americans for research in Alzheimer disease have been regarded as difficult undertakings with poor results. The typical explanation for failure to respond to research participation options is a widespread mistrust of research and the biomedical community. Mistrust is a reasonable response; given the historic reality of malfeasance, victimization, and mistreatment over the course of the research participation history of African Americans. The challenges are real but there are opportunities for successful recruitment and retention of African Americans for research including research on Alzheimer disease. Participation, however, comes with specific terms and considerations. Two of the most prominent criteria for research recruitment and retention are the transparency and accountability of the investigator, which may determine how he or she proceeds from the start of the process throughout the steps of recruitment, retention, and subsequent follow-up with the community.

Sleep quality varies as a function of 5-HTTLPR genotype and stress.

OBJECTIVE: To test the hypothesis that allelic variation in 5HTT gene-linked polymorphic region (5-HTTLPR) genotype was associated with sleep quality (Pittsburgh Sleep Quality Index, PSQI) as a main effect and as moderated by the chronic stress of caregiving. Serotonin (5HT) is involved in sleep regulation and the 5HT transporter (5HTT) regulates 5HT function. A common 44-base pair deletion (s allele) polymorphism in the 5-HTTLPR is associated with reduced 5HTT transcription efficiency and 5HT uptake in vitro. METHODS: Subjects were 142 adult primary caregivers for a spouse or parent with dementia and 146 noncaregiver controls. Subjects underwent genotyping and completed the PSQI. RESULTS: Variation in 5-HTTLPR genotype was not related to sleep quality as a main effect (p > .36). However, there was a caregiver X 5-HTTLPR interaction (p < .009), such that the s allele was associated with poorer sleep quality in caregivers as compared with controls. CONCLUSIONS: Findings suggest that the s allele may moderate sleep disturbance in response to chronic stress.