Laura N. Gitlin

Patient–Family Agenda Setting for Primary Care Patients with Cognitive Impairment: the SAME Page Trial

BackgroundEstablishing priorities for discussion during time-limited primary care visits is challenging in the care of patients with cognitive impairment. These patients commonly attend primary care visits with a family companion.ObjectiveTo examine whether a patient–family agenda setting intervention improves primary care visit communication for patients with cognitive impairmentDesignTwo-group pilot randomized controlled studyParticipantsPatients aged 65u2009+ with cognitive impairment and family companions (nu2009=u200993 dyads) and clinicians (nu2009=u200914) from two general and one geriatrics primary care clinicInterventionA self-administered paper-pencil checklist to clarify the role of the companion and establish a shared visit agendaMeasurementsPatient-centered communication (primary); verbal activity, information disclosure including discussion of memory, and visit duration (secondary), from audio recordings of visit discussionResultsDyads were randomized to usual care (nu2009=u200944) or intervention (nu2009=u200949). Intervention participants endorsed an active communication role for companions to help patients understand what the clinician says or means (90% of dyads), remind patients to ask questions or ask clinicians questions directly (84% of dyads), or listen and take notes (82% of dyads). Intervention dyads identified 4.4 health issues for the agenda on average: patients more often identified memory (59.2 versus 38.8%; pu2009=u20090.012) and mood (42.9 versus 24.5%; pu2009=u20090.013) whereas companions more often identified safety (36.7 versus 18.4%; pu2009=u20090.039) and personality/behavior change (32.7 versus 16.3%; pu2009=u20090.011). Communication was significantly more patient-centered in intervention than in control visits at general clinics (pu2009<u20090.001) and in pooled analyses (ratio of 0.86 versus 0.68; pu2009=u20090.046). At general clinics, intervention (versus control) dyads contributed more lifestyle and psychosocial talk (pu2009<u20090.001) and less biomedical talk (pu2009<u20090.001) and companions were more verbally active (pu2009<u20090.005). No intervention effects were found at the geriatrics clinic. No effect on memory discussions or visit duration was observed.ConclusionPatient–family agenda setting may improve primary care visit communication for patients with cognitive impairment.Trial RegistrationClinicalTrials.gov: NCT02986958

Making Life Better for Individuals Living With Dementia

This chapter suggests that there is good news in the sense that there is a growing evidentiary base that can help to inform how we effectively support individuals living with dementia to make life better now. Although there are shortcomings in the evidence and critical gaps in research and policy that prevent us from fully achieving quality care and services, there are also strong signals as to ways to support a “good life.” We discuss evidence-informed strategies to address the specific clinical symptoms of dementia including cognitive decline, functional disability, and behavioral symptoms. For each of these, there are proven approaches that can be integrated into clinical and social services. We also examine why evidence is not being scaled up and widely implemented and suggest new ways of doing research and policies that may enhance uptake.

How We Can Support Families

Our fundamental message in this chapter is that although more research may be needed for developing and/or adapting approaches that address the wide ranging needs of families, there are actions grounded in evidence that can be taken now that would go a long way to improving dementia care and helping family caregivers. Research suggests that when working with a family caregiver, assessment of needs, care preferences, and caregiving goals is paramount. Not all family caregivers need intensive supportive services; however, all family caregivers need education, access to resources as needed, and skills to manage the complexities of dementia care as different care challenges arise. We argue that we have an ethical and moral responsibility to reach out to all families to assess and address their unmet needs and as these needs may develop and unfold over time.

Family Member as Care Partner

In this chapter, we broaden our lens from a focus on the person living with dementia to the family caregiver. We examine the multiple and evolving roles of the family caregiver and the impact of assuming these roles on the caregiver’s health and well-being across the trajectory of dementia. We discuss the consequences of caregiving on family members from the time of diagnosis to end-of-life care and describe how the family caregiving experience is diverse and varies by the role caregivers assume, when the caregiving role occurs in the life course of a family member, and by race, ethnic, cultural disparities in access to knowledge, skills, care and resources.

Lived Experiences of Individuals With Dementia

Although dementia affects every aspect of an individual’s physical, social, emotional, financial health, and well-being, little is known about lived experiences and adaptive processes, or how individuals with dementia themselves experience the disease process. To understand how dementia affects individuals from a holistic perspective, this chapter presents a multifactorial quality of life conceptual model, referred to as the “Good Life.” Using this four-sector model (behavioral competence, perceived quality of life, psychological well-being, and objective environment), we examine the enduring and changing needs of individuals in these sectors as the disease progresses, as well as the key daily challenges including managing stigma, disclosing diagnosis, staying engaged, and maintaining purpose, control, and agency. We emphasize that attention to the Good Life Model underscores the multifaceted and individuated considerations including social determinants, age of onset, and life space factors, from which to develop supportive approaches for helping individuals achieve their preferences for a good life. It also supports a holistic understanding of quality of life versus a reductionistic medical-only perspective.

Formal Caregivers: The Role of the Interprofessional Team

A well-prepared dementia care workforce is urgently needed to provide care to the growing population of older adults with dementia. The reality, however, is that most health and human service professionals are ill-prepared to effectively engage and support persons with dementia and their family caregivers. In this chapter, we argue for a collaborative and interprofessional team approach to formal caregiving. We describe the roles of each member of the interprofessional care team in providing person and family-centered approach to dementia care.

What Is a Falls Risk Factor? Factors Associated with Falls per Time or per Step in Individuals with Glaucoma: RISK FACTORS FOR FALLS PER TIME OR STEP

To determine whether visual field (VF) damage or other factors confer a similar risk of falling when falls are ascertained as a rate over time (falls/year) as when ascertained over activity (falls/step).

African-American caregivers’ perspectives on aggressive behaviors in dementia:

Purpose Although African-American dementia caregivers report less upset and more confidence managing aggressive behaviors when compared to whites, their contextual experience remains unclear and this study explores that context. Methods Semi-structured interviews with 13 African-American family caregivers were analyzed using content analysis. Results Two themes emerged, “It’s the disease…not the person” and “You got to pick your battles.” “It’s the disease…not the person,” reframing aggressive behavior, included three sub-themes. Sometimes the person with dementia seemed like a stranger but caregivers remembered “In there somewhere is that person.” Aggressive behavior made this perspective difficult as they reported, “Sometimes it’s hard not to take it personal.” Premorbid dyadic conflict made caregiving difficult but caregivers remembered they were “Not who they were then.” “You got to pick your battles,” reflecting cognitive and behavioral strategies, also included three sub-themes. Participants prioritized caregiving over other commitments by reminding themselves “I got to do what I gotta do.” Preventing aggressive behaviors was most successful when “We didn’t argue…we didn’t insist” and caregivers remembered “Don’t put her in a position to fail” when involving the person with dementia in activities. Implications African-American caregivers described substantial challenges when confronted by aggressive behaviors. Strategies employed by caregivers enabled them to maintain a caring perspective and the person with dementia to maintain calm. Interventions that help caregivers manage aggressive behaviors may benefit by considering the challenges, cultural values, and effective strategies used by African-Americans.

MIND at Home-Streamlined: Study protocol for a randomized trial of home-based care coordination for persons with dementia and their caregivers

BACKGROUNDnDementia is associated with high health care costs, premature long-term care (LTC) placement, medical complications, reduced quality of life, and caregiver burden. Most health care providers and systems are not yet organized or equipped to provide comprehensive long-term care management for dementia, although a range of effective symptoms and supportive care approaches exist. The Maximizing Independence at Home-Streamlined (MIND-S) is a promising model of home-based dementia care coordination designed to efficiently improve person-centered outcomes, while reducing care costs. This report describes the rationale and design of an NIA-funded randomized controlled trial to test the impact of MIND-S on time to LTC placement, person with dementia outcomes (unmet needs, behavior, quality of life), family caregiver outcomes (unmet needs, burden), and cost offset at 18 (primary end point) and 24u202fmonths, compared to an augmented usual care group.nnnMETHODSnThis is a 24-month, parallel group, randomized trial evaluating MIND-S in a cohort of 304 community-living persons with dementia and their family caregivers in Maryland. MIND-S dyads receive 18u202fmonths of care coordination by an interdisciplinary team comprised of trained non-clinical community workers (e.g. Memory Care Coordinators), a registered nurse, and a geriatric psychiatrist. Intervention components include in-home dementia-related needs assessments; individualized care planning; implementation of standardized evidence-based care strategy protocols; and ongoing monitoring and reassessment. Outcomes are assessed by blinded evaluators at baseline, 4.5, 9, 13.5, 18, and 24u202fmonths.nnnDISCUSSIONnTrial results will provide rigorous data to inform innovations in effective system-level approaches to dementia care.

Locations, Circumstances, and Outcomes of Falls in Patients With Glaucoma

PURPOSEnTo characterize the locations, circumstances, and outcomes of falls in patients with varying degrees of glaucoma.nnnDESIGNnProspective cohort study.nnnMETHODSnPatients with suspected or diagnosed glaucoma completed monthly calendars reporting falls. After each fall, a 30-item questionnaire was administered to determine fall location, circumstances, and injury. Mean deviation on visual field (VF) testing was used to categorize glaucoma severity. Main outcome measures were fall locations, circumstances, and outcomes.nnnRESULTSnOne-hundred forty-two patients experienced 330 falls. Falls were most likely to occur in/around the home (71%), and this likelihood did not vary significantly with severity of VF damage (P > .2). The most commonly cited fall circumstances were tripping (43.6%), slipping (31.3%), uneven flooring (23.5%), and poor vision (15.9%). The circumstances related to falls did not vary by severity of VF damage (P > .2), except for poor vision, which was more frequently cited in individuals with more advanced VF damage (Pxa0= .001). Forty-three percent of falls resulted in some injury; and the likelihood of injury did not vary by severity of VF loss (Pxa0= .60) or any other factor except floor type and number of comorbidities (Pxa0<xa0.05 for all). Falls in persons with more severe glaucoma were more likely to result in a fracture (9.4%) or an emergency room visit (18.8%), though these associations did not persist in multivariable models (P > .5 for all).nnnCONCLUSIONSnGlaucoma patients fall mostly in/around the home and demonstrate similar fall circumstances across the spectrum of disease severity, suggesting that current fall prevention interventions, particularly those emphasizing home modification, may be an adequate starting point to prevent falls in this high-risk-group.