Sensory Processing Abnormalities in Community-Dwelling Older Adults with Cognitive Impairment: A Mixed Methods Study

Mild cognitive impairment (MCI) or dementia often leads to behavioral and psychiatric symptoms of dementia (BPSD). Sensory processing abnormalities may be associated with BPSD. The purpose of this study was to explore relationships among sensory processing, behavior, and environmental features within the homes of people with MCI or dementia. This project used mixed methods to assess participants’ sensory processing, care partner perspectives on behaviors, and in situ observations of the home environment. Nine participants with cognitive impairment (MCI n = 8, early dementia = 1) and their care partners were included. Seven participants with cognitive impairment were reported to have abnormal sensory processing. Findings suggest that unique environmental adaptations, tailored to personal and sensory preferences for each participant, were associated with a decreased level of behavioral disruption during the observation periods. Implementing sensory-based approaches to maximize environment adaptation may be beneficial in reducing disruptive behaviors for adults with cognitive impairment.

A Core Outcome Set for Trials in Glomerular Disease

Background and objectivesOutcomes reported in trials in adults with glomerular disease are often selected with minimal patient input, are heterogeneous, and may not be relevant for clinical decision making. The Standardized Outcomes in Nephrology–Glomerular Disease (SONG-GD) initiative aimed to establish a core outcome set to help ensure that outcomes of critical importance to patients, care partners, and clinicians are consistently reported.Design, setting, participants, and measurementsWe convened two 1.5-hour workshops in Melbourne, Australia, and Washington, DC, United States. Attendees were identified purposively with 50 patients/care partners and 88 health professionals from 19 countries; 51% were female. Patients and care partners were from the United States, Australia, and Canada, and had experience of a glomerular disease with systemic features (n=9), kidney-limited nephrotic disease (n=9), or other kidney-limited glomerular disease (n=8). Attendees reviewed the results of the SONG-GD Delphi survey and aims of the workshop and then discussed potential core outcomes and their implementation in trials among moderated breakout groups of eight to 12 people from diverse backgrounds. Transcripts of discussions were analyzed thematically.ResultsThree themes were identified that supported the proposed core outcomes: limiting disease progression, stability and control, and ensuring universal relevance (i.e., applicable across diverse populations and settings). The fourth theme, preparedness for implementation, included engaging with funders and regulators, establishing reliable and validated measures, and leveraging existing endorsements for patient-reported outcomes.ConclusionsWorkshop themes demonstrated support for kidney function, disease activity, death, life participation, and cardiovascular disease, and these were established as the core outcomes for trials in adults with glomerular disease. Future work is needed to establish the core measures for each domain, with funders and regulators central to the uptake of the core outcome set in trials.

Identifying adoption and usability factors of locator devices for persons living with dementia

A growing number of Canadians live with dementia. Strategies to reduce the risks of getting lost include physical barriers, restraints and medications. However, these strategies can restrict one’s participation in meaningful activities and reduce quality of life. Locator devices can be used to manage safety risks while also supporting engagement and independence among persons living with dementia. As more locator devices become available on the market, adoption rates would be affected by certain factors. There is no clear, standardized approach to identify the factors that have an influence on the acceptance and usability of locator devices for persons with dementia and their care partners. This project aimed to identify factors related to acceptance and usability of locator devices that are important to individuals with dementia, their care partners, service providers and technology developers. Qualitative description and conventional content analysis guided our approach. We conducted 5 focus groups with 21 participants. Trustworthiness strategies included multiple data sources, data verification for accuracy and peer debrief. Five overarching factors emerged as critical aspects in the acceptance and usability of locator devices. These factors were inclusivity, simplicity, features, physical properties and ethics. Participants thought that locator devices do not adequately consider privacy and stigma. Therefore, the acceptance and usability of locator devices could be enhanced if privacy and stigma are addressed. The factors identified will inform the creation of an acceptance and usability scale for locator devices used by persons living with dementia, their care partners and service providers.

Identifying Primary Care Models of Dementia Care that Improve Quality of Life for People Living with Dementia and their Care Partners: An Environmental Scan

Dementia is a growing concern in Canada, affecting peoples’ health and raising the cost of care. Between June and October 2019, we conducted an environmental scan to identify primary care models, strategies, and resources for dementia care from 11 pre-selected countries and assess their impact on quality-of-life measures. Search strategies included a rapid scoping review, grey literature search, and discussions with stakeholders. Eighteen primary care-based models of dementia care were identified. Common factors include team-based care, centralized care/case coordination, individual treatment plans, a stepped-care approach, and support for care partners. Five provinces had released a dementia strategy. Evidence of positive outcomes supported primary care-based models for dementia care, although only one model demonstrated evidence of impact on quality of life. Although these findings are encouraging, further research is needed to identify primary care-based models of dementia care that demonstrably improve quality of life for people living with dementia and their care partners.

Evaluating the Appropriateness and Feasibility of the Care Partner Hospital Assessment Tool (CHAT)

Hospital practitioners rely on care partners of older adults to provide complex care without identifying and addressing their needs. The Care Partner Hospital Assessment Tool (CHAT) was developed to identify the education skill training needs of care partners of hospitalized older adults. This two-phased mixed-method study evaluated the appropriateness and feasibility of the CHAT. The phase 1 quantitative survey with caregiving experts indicated 70–100% agreement for the length and helpfulness of the CHAT (n = 23). These results were supported by phase 2 qualitative interviews with hospital administrators and practitioners, which revealed the following themes: (1) intuitive and clear design worth sustaining and (2) concerns and proposed solutions for implementation. Findings suggest the CHAT is an appropriate and feasible tool for hospital practitioners to tailor their education and skills training to address care partners’ needs. Identifying care partners’ needs is an important step in ensuring they are prepared to complete their caregiving responsibilities.

A Mixed-Methods Study of the Impact of Mild Cognitive Impairment Diagnosis on Patient and Care Partner Perception of Health Risks

Background: Older patients (≥65 years) with mild cognitive impairment (MCI) are undertreated for cardiovascular disease (CVD). One reason for this disparity could be that patients with MCI might underestimate the chances of CVD and overestimate dementia. Objective: To compare conceptions of health risk between older patients with MCI and normal cognition (NC) and their care partners. Methods: We conducted a multi-center mixed-methods study of patient-care partner dyads completing written quantitative surveys (73% response rate; 127 dyads: 66 MCI and 61 NC) or semi-structured interviews (20 dyads: 11 MCI, and 9 NC). Surveys assessed two-year patient risks of dementia, heart attack, stroke, and fall. Interviews assessed similar health risks and reasons for risk perceptions. Results: On surveys, a similarly low proportion of MCI and NC patients felt they were at risk of stroke (5% versus 2% ; p = 0.62) and heart attack (2% versus 0% ; p = 0.99). More MCI than NC patients perceived dementia risk (26% versus 2% ; p < 0.001). Care partners’ survey findings were similar. Interviews generally confirmed these patterns and also identified reasons for future health concerns. For both MCI and NC dyads, personal experience with cognitive decline or CVD (personal or family history) increased concerns about each disease. Additionally, perceptions of irreversibility and lack of treatment for cognitive decline increased concern about dementia. Conclusion: Less use of CVD treatments in MCI seems unlikely to be driven by differential perceptions of CVD risk. Future work to improve awareness of CVD risks in older patients and dementia risk in patients with MCI are warranted.

Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment

Background Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs were Medicare beneficiaries in the US, aged >65 years, and diagnosed with mild cognitive impairment or dementia. Care partners were identified by PwCIs as being most involved in their health care. Measurements PwCIs’ completion of ADs was determined by 1 or more affirmative responses to dichotomous indicators for formalizing a living will, medical directive, or durable power of attorney for health care. Discussion occurrence was based on PwCI reports and agreement between PwCI and care partner reports of prior conversations about PwCIs’ ACP preferences between PwCIs and care partners. Results In logistic regression models adjusted for PwCI and care partner characteristics, PwCIs who had (vs. had not) discussed ACP were 10% more likely to complete ADs. PwCIs from dyads agreeing (vs. disagreeing) a discussion occurred were 7% more likely to complete ADs. PwCIs from care dyads in agreement (vs. disagreement) about non-discussion were 11% less likely to formalize ADs. Conclusions Discussing ACP with care partners plays a direct, positive role in completing ADs among PwCIs. Health care providers who approach ACP as a dyadic, communicative decision-making process from the outset may facilitate PwCIs’ uptake of ADs.

Using Focus Groups to Understand Dialysis Staff Perspectives on Delivering Transplant Education

Introduction Kidney transplant education in dialysis facilities could be optimized with internet resources, like videos, but most qualitative research predates widespread availability of online video education about kidney transplantation. To improve understanding of dialysis staff transplant education practices, as well as the potential value of video, we conducted focus groups of dialysis center staff members in Buffalo, NY. Methods/Approach Seventeen focus groups (97 participants: 53 nurses, 10 dialysis technicians, 6 social workers, 6 dieticians, 7 administrative personnel, 2 trainees, and 1 insurance coordinator) from 8 dialysis facilities in Buffalo, NY, were conducted, audio-recorded, transcribed, and analyzed. After thematic data analysis, a diverse patient and caregiver community advisory board was invited to comment, and their voices were integrated. Findings: Five key themes were identified that captured barriers to transplant education delivery and how online video could be a facilitator: (1) delivery of transplant education was reliant on one person, (2) other dialysis staff had time to answer transplant questions but felt uninformed, (3) patient lack of interest in existing supplementary transplant education, (4) patient disinterest in transplantation education was due to education timing, feeling overwhelmed, and transplant fear/ambivalence, and (5) video education could be flexible, low effort, and spark transplant interest. Study limitations are potential selection bias and inclusion of English-speaking participants only. Discussion Dialysis staff barriers of time, insufficient knowledge, and limited resources to provide education to patients and their care partners may be mitigated with online educational videos without increasing staff workload.

“It’s Going to be Different for Everyone”: Negotiating Quality of Life and Care Priorities Within Care Convoys

Objective: The overall goal of this analysis was to learn about residents’ quality of life and quality of care in assisted living over time and from multiple viewpoints within support networks. Method: This grounded theory analysis examined qualitative data collected from 50 residents and 169 of their care network members followed over two consecutive 2-year periods in 8 diverse settings. Results: Quality involved a dynamic process of “negotiating priorities,” which refers to working out what is most important for residents’ quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because quality is personal, subjective, dynamic, and situational. Discussion: Communication and collaboration among formal and informal care partners are vital to residents’ ability to age in place with a high quality of life and quality care.