Insights into designing educational materials for persons living with dementia: a focus group study.

BACKGROUND: Persons living with dementia (PLWD) may experience communication difficulties that impact their ability to process written and pictorial information. Patient-facing education may help promote discontinuation of potentially inappropriate medications for older adults without dementia, but it is unclear how to adapt this approach for PLWD. Our objective was to solicit feedback from PLWD and their care partners to gain insights into the design of PLWD-facing deprescribing intervention materials and PLWD-facing education material more broadly. METHODS: We conducted 3 successive focus groups with PLWD aged ≥ 50 (n = 12) and their care partners (n = 10) between December 2022 and February 2023. Focus groups were recorded and transcripts were analyzed for overarching themes. RESULTS: We identified 5 key themes: [1] Use images and language consistent with how PLWD perceive themselves; [2] Avoid content that might heighten fear or anxiety; [3] Use straightforward delivery with simple language and images; [4] Direct recipients to additional information; make the next step easy; and [5] Deliver material directly to the PLWD. CONCLUSION: PLWD-facing educational material should be addressed directly to PLWD, using plain, non-threatening and accessible language with clean, straightforward formatting.

"The Filter is Kind of Broken": Family Caregivers' Attributions About Behavioral and Psychological Symptoms of Dementia.

OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are common, often challenging to manage, and may erode caregivers' well-being. Few studies have explored caregivers' perspectives of what causes these behaviors, but such attributions may be important-particularly if they negatively impact the care dyad. This study examined causal attributions about BPSD among individuals caring for a family member with dementia. DESIGN: In-depth qualitative data were obtained from family caregivers of older adults with dementia. SETTING: As part of a larger study (NINR R01NR014200), four focus groups were conducted with caregivers by an experienced facilitator. PARTICIPANTS: A total of 26 family caregivers participated in the four focus groups. MEASUREMENTS: Caregivers reported their own attributions about the causes of their care recipient's BPSD. Sessions were audio-recorded. Data were transcribed, coded to determine relevant concepts, and reduced to identify major categories. RESULTS: Five categories were determined. Caregivers attributed BPSD to: 1) neurobiological disease factors; 2) physical symptoms or comorbid health conditions; 3) psychological reactions to dementia; 4) shifting social roles and relationships following dementia onset; and 5) environmental changes such as lack of routine and medical transitions (e.g., hospitalization). Despite this seemingly multifactorial attribution to BPSD etiology, a number of respondents also indicated that BPSD were at least partly within the care recipient's control. CONCLUSIONS: Family caregivers attribute BPSD to a range of care recipient and environmental factors. Caregivers' own causal beliefs about BPSD may reflect unmet educational needs that should be considered in the development of targeted interventions to minimize caregiving stress.

Effect of the WeCareAdvisor™ on family caregiver outcomes in dementia: a pilot randomized controlled trial.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are universal and associated with multiple negative outcomes. This pilot randomized controlled trial (RCT) evaluated the effect of using the WeCareAdvisor, an innovative web-based tool developed to enable family caregivers to assess, manage, and track BPSD. METHODS: This RCT enrolled 57 dementia family caregivers from community and clinical settings in Ann Arbor, Michigan and Baltimore, Maryland. Participants were randomly assigned to immediate use of the WeCareAdvisor tool (WCA, n = 27) or a Waitlist control group (n = 30) that received the tool after a one-month waiting period. Outcomes for the caregiver and the person they were caring for were assessed at baseline (T0) and one-month followup for both the WCA (T1) and Waitlist control (T2) groups. RESULTS: Caregiver mean age was 65.9 ± 14.0 years old. About half (49%) were spouses. Baseline characteristics were comparable between groups except for mean caregiver confidence which was higher in the control group (WCA 35.0 ± 10.0 vs. Waitlist control 39.7 ± 6.9, p = 0.04). There were no significant differences between the WCA and control groups in characteristics of the person with dementia. After their one-month of tool use (T1), WCA caregivers showed significant within group improvement in caregiver distress (- 6.08 ± 6.31 points, t = - 4.82, p < 0.0001) and behavioral frequency (- 3.60 ± 5.05, t = - 3.56, p = 0.002), severity (- 3.24 ± 3.87, t = - 4.19, p = 0.0003) and total behavioral score (- 6.80 ± 10.73, t = - 3.17, p = 004). In the same timeframe, Waitlist control caregivers showed a significant decrease in confidence (- 6.40 ± 10.30, t = - 3.40, p = 0.002). The WCA group showed greater improvement in distress compared to the Waitlist group (T0-T1; t = - 2.49, p = 0.02), which remained significant after adjusting for site and baseline distress. There were no significant between-group differences in caregiver confidence or other secondary outcomes. After their one month of tool use (T2), the Waitlist group also showed significant improvement in caregiver distress (- 3.72 ± 7.53, t = - 2.66, p = 0.013), stress (- 0.41 ± 1.02, t = - 2.19, p = 0.037), confidence (4.38 ± 5.17, t = 4.56, p < 0.0001), burden (- 2.76 ± 7.26, t = - 2.05, p = 0.05), negative communication (- 1.48 ± 2.96, t = - 2.70, p = 0.012) and behavioral frequency (- 1.86 ± 4.58, t = - 2.19, p = 0.037); distress remained significant after adjustment. CONCLUSIONS: In this pilot RCT, WCA use resulted in a significant decrease in caregiver distress. Future research will identify whether longer use of WCA can impact other caregiver and behavioral outcomes. TRIAL REGISTRATION: Clinicaltrials.gov identifier NCT02420535 (Date of registry: 4/20/2015, prior to the start of the clinical trial).

WeCareAdvisor™: The Development of a Caregiver-focused, Web-based Program to Assess and Manage Behavioral and Psychological Symptoms of Dementia.

BACKGROUND/OBJECTIVES: Behavioral and psychological symptoms of dementia (BPSD) are nearly universal in dementia and associated with multiple negative outcomes. Current real-world management is largely pharmacologic, despite poor risk/benefit. The WeCareAdvisor was designed to enable family caregivers to assess, manage, and track BPSD using nonpharmacologic strategies. DESIGN: In-depth qualitative data were collected from family caregivers of people with dementia to inform: (1) style of approach and "look and feel" of the tool, and (2) the types of psychoeducation most needed by caregivers. RESULTS: We conducted 4 focus groups and a technology survey (n=26) as well as additional individual semistructured interviews (n=12) with family caregivers. Main themes of the qualitative work included: (1) need to minimize difficulty and training time; (2) importance of "one-stop shopping" for information; and (3) necessity for information to be tailored to the caregiver and person with dementia. This information was then combined with effective existing evidence-based behavioral strategies to create a web-based tailored caregiver-support tool. CONCLUSIONS: The WeCareAdvisor was designed with input on functionality and content by end-users, family caregivers. The randomized controlled trial of WeCareAdvisor will test whether the tool improves outcomes including caregiver upset and burden and frequency and severity of BPSD.

Factors Associated With Benzodiazepine and Antipsychotic Prescribing in Hospice: A Qualitative Study of Hospice Prescribers.

OBJECTIVES: Benzodiazepine and antipsychotic medications are common components of the hospice toolkit and are routinely prescribed for behavioral symptom management at end of life. These medications have significant associated risks but, despite their frequent use, little is known about how clinicians weigh prescribing decisions for individuals in hospice. In this qualitative study, we examined the key factors that influence the decision to initiate a benzodiazepine and antipsychotic medication for management of behavioral symptoms at end of life. DESIGN: A qualitative study using semi-structured interviews and descriptive qualitative analysis. SETTING AND PARTICIPANTS: We conducted semi-structured interviews with prescribing hospice physicians and nurse practitioners working in hospice settings across the United States. METHODS: Hospice clinicians were asked to describe factors that influence prescribing decisions to initiate benzodiazepine and antipsychotic medications for the management of behavioral symptoms. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major themes. RESULTS: We completed 23 interviews with hospice physicians and nurse practitioners. On average, participants had worked in a hospice setting for a mean of 14.3 years (SD: 10.9); 39% had geriatrics training. Major themes related to benzodiazepine and antipsychotic prescribing were (1) caregiving factors strongly influence the use of medications, (2) patient and caregiver stigma and concerns regarding medication use limit prescribing, (3) medications are initiated to avoid hospitalization or transition to a higher level of care, and (4) nursing home hospice care brings unique challenges. CONCLUSION AND IMPLICATIONS: Caregiver factors and the setting of hospice care strongly influence clinician decisions to initiate benzodiazepines and antipsychotics in hospice. Caregiver education about medication use at end of life and support in managing challenging behaviors may help promote optimal prescribing.

"Sometimes it's not about the money... it's the way you treat people...": A Qualitative Study of Nursing Home Staff Turnover.

OBJECTIVE: To better understand and compare resident family and nursing home staff experiences and perceptions of licensed and unlicensed direct care staff turnover. DESIGN: Descriptive qualitative design. SETTING AND PARTICIPANTS: Nursing home resident family members and direct care registered nurses (RNs), licensed practical nurses (LPNs), certified nursing assistants (CNAs), and administrative staff. METHODS: We conducted semistructured interviews with family members and nursing home staff between September 2019 and July 2020. Using a rapid analysis approach, we compared family member, direct care RNs, LPNs, CNAs, and administrative staff experiences and perceptions related to staff turnover, ways to reduce turnover, and strategies for minimizing disruptions. RESULTS: We completed interviews with 17 family members, 25 direct care RNs, LPNs, and CNAs, and 6 administrative staff from 13 nursing homes primarily located in southeastern Michigan. Family members had mixed experiences with turnover, but commonly described the need for consistent, personalized care to ensure safe, high-quality resident care. Direct care RNs, LPNs, and CNAs expressed a similar viewpoint and frustration with not being able to provide the care they would like because of turnover or short staffing. Although better wages were mentioned, all groups also identified the importance of staff feeling appreciated and supported as critical for decreasing turnover. Adequate training and strategies to acclimate new staff to resident preferences were also noted as approaches for minimizing care disruptions during turnover. CONCLUSIONS AND IMPLICATIONS: Our findings largely confirm those of others regarding potential contributing factors and consequences of staff turnover. However, our findings also provide a clear message about important areas on which to focus. This includes identifying ways to effectively provide consistent, person-centered care for residents in the context of staffing inconsistencies and the need for a more people-oriented work environment for nursing home staff to reduce turnover and minimize disruptions in resident care.

Adherence to Depression Treatment in Primary Care: A Randomized Clinical Trial.

Importance: Nonadherence to antidepressant medication is common and leads to poor outcomes. Early nonadherence is especially problematic. Objective: To test the effectiveness of a psychosocial intervention to improve early adherence among older patients whose primary care physician newly initiated an antidepressant for depression. Design, Setting, and Participants: The Treatment Initiation and Participation Program (TIP) was offered in a 2-site randomized clinical effectiveness study between January 2011 and December 2014 at primary care practices in New York, New York, and Ann Arbor, Michigan. Analyses began in February 2016. All participants were middle-aged and older adults (aged ≥55 years) who received newly initiated depression treatment by their primary care physician and recruited within 10 days of their prescription. Analyses were intention-to-treat. Interventions: Participants were randomly assigned to the intervention (TIP) or treatment as usual. Participants in the TIP group identified and addressed barriers to adherence, including stigma, misconceptions, and fears about treatment, before developing a personalized adherence strategy. The Treatment Initiation and Participation Program was delivered in three 30-minute contacts scheduled during a 6-week period just after the antidepressant was prescribed. Main Outcomes and Measures: The primary outcome was self-reported adherence on the Brief Medication Questionnaire, with adequate early adherence defined as taking 80% or more of the prescribed doses at 6 and 12 weeks. The secondary outcome was depression severity. Results: In total, 231 middle-aged and older adults (167 women [72.3%] and 64 men [27.7%]) without significant cognitive impairment were randomly assigned to the TIP intervention (n = 115) or treatment as usual (n = 116). Participants had a mean (SD) age of 67.3 (8.4) years. Participants in the TIP group were 5 times more likely to be adherent at 6 weeks (odds ratio, 5.54; 95% CI, 2.57 to 11.96; χ21 = 19.05; P < .001) and 3 times more likely to be adherent at both 6 and 12 weeks (odds ratio, 3.27; 95% CI, 1.73 to 6.17; χ21 = 13.34; P < .001). Participants in the TIP group showed a significant earlier reduction (24.9%) in depressive symptoms (95% CI, 13.9 to 35.9; t337 = 4.46; adjusted P < .001). In both groups, participants who were 80% adherent at weeks 6 and 12 had a 15% greater improvement in depressive symptoms from baseline over the course of treatment (95% CI, -0.2 to -30; t369 = 1.93; P = .051). Conclusions and Relevance: The Treatment Initiation and Participation Program is an effective intervention to improve early adherence to pharmacotherapy. Improved adherence can promote improvement in depression. Trial Registration: clinicaltrials.gov Identifier: NCT01301859.