The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program.

OBJECTIVES: To develop and evaluate feasibility of a program for family and professional caregivers to identify and manage apathy in people with dementia: the Shared Action for Breaking through Apathy program (SABA). METHODS: A theory- and practice-based intervention was developed and tested among ten persons with apathy and dementia in two Dutch nursing homes from 2019 to 2021. Feasibility was evaluated with interviews with family caregivers (n = 7) and professional caregivers (n = 4) and two multidisciplinary focus groups with professional caregivers (n = 5 and n = 6). RESULTS: SABA was found feasible for identifying and managing apathy. Caregivers mentioned increased knowledge and awareness regarding recognizing apathy and its impact on their relationship with the person with apathy. They experienced increased skills to manage apathy, a greater focus on small-scale activities and increased appreciation of small moments of success. The content, form and accessibility of the program's materials were considered facilitating by all stakeholders, as was the compatibility of the procedures with the usual way of working. The expertise and involvement of stakeholders, staff stability and the support of an ambassador and/or manager were facilitating, while insufficient collaboration was a barrier. Organizational and external aspects like not prioritizing apathy, staff discontinuity, and the Covid-19 pandemic were perceived as barriers. A stimulating physical environment with small-scale living rooms, and access to supplies for activities were considered facilitating. CONCLUSIONS: SABA empowers family and professional caregivers to successfully identify and manage apathy. For implementation, it is important to take into account the facilitators and barriers resulting from our study.

Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study.

BACKGROUND: Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs). METHODS: Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders. RESULTS: Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one's expectations, and appreciating little successes. CONCLUSIONS: When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.

Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic.

BACKGROUND: COVID-19 restrictions in nursing homes resulted in a reduction in stimuli for residents. This study aimed to explore observed effects of changes in stimuli, both targeted (e.g., planned recreational activities) and untargeted (e.g., spontaneous noise), on challenging behavior in nursing home residents during COVID-19 anti-pandemic measures. METHODS: In an online survey, nursing home healthcare professionals in the Netherlands provided their perspectives on the effects of the reduction in untargeted stimuli on residents with mild, advanced, or no dementia, and on different types of challenging behavior (i.e., psychotic, depressed, anxious, agitated, or apathetic behavior). Additionally, we asked participants' opinions about strategies for limiting untargeted stimuli and for adjusting targeted stimuli for optimal management of challenging behaviors. RESULTS: In total, 199 professionals completed the survey. Residents with advanced dementia and those with psychotic and agitated behavior seemed to benefit from the reductions in stimuli not specifically targeted at the resident. In contrast, residents without dementia and those with depressive and apathetic behavior seemed to be negatively affected by reductions in untargeted stimuli. Participants would like to continue reducing untargeted stimuli in the future (e.g., limiting the use of corridors adjacent to residents' rooms) and to adapt existing or introduce new initiatives involving targeted stimuli (e.g., small-scale, individually tailored activities). Responses to open-ended questions revealed additional initiatives that could be useful in nursing home care. CONCLUSIONS: This study provided lessons to learn from the COVID-19 measures in nursing homes. While many residents may have been negatively affected by the restrictions imposed during the pandemic, specific resident groups may have benefitted from the reduction in untargeted stimuli and from the adjustments made to daily activities. Various strategies and initiatives used in nursing homes during the pandemic seem promising for meeting individual needs in managing challenging behavior. These findings suggest that certain stimuli may affect specific resident groups differently. This underlines the importance of finding the right balance between stimuli and tranquility, tailored to the needs of individual residents. It is important to consider the stimuli present in nursing homes, whether targeted or untargeted, when analyzing and treating challenging behavior.

Apathy and health-related quality of life in nursing home residents.

PURPOSE: To explore the association between apathy and health-related quality of life (HRQoL) from resident and proxy perspectives and whether cognition and depression moderate this relationship. METHODS: Secondary analyses with baseline data from a cluster randomized trial on the effects of a care program for depression in Nursing Homes (NHs) were conducted. For HRQoL, the Visual Analogue Scale (VAS) and the Dutch version of the European Quality of Life (EQ-5D) were administered to 521 NH residents, and to professional caregivers reporting from the perspective of the NH resident (Resident-Proxy) and from their own perspective (Proxy-Proxy). Utility scores (U) were calculated for the three perspectives. Apathy, depression, and cognition were measured using the 10-item Apathy Evaluation Scale, the Cornell Scale for Depression in Dementia, and the standardized Mini-Mental State Examination, respectively. RESULTS: Mixed models adjusted for clustering within NH units revealed that apathy was negatively associated with HRQoL both from the Resident-Proxy perspective (EQ-5D VAS: estimated effect, - 0.31, P < 0.001; EQ-5D Utility: - 0.30, P < 0.001) and from the Proxy-Proxy perspective (VAS: - 0.29, P < 0.001; U: - 0.03, P < 0.001), but not from the Resident-Resident perspective (VAS: - 0.05, P = 0.423; Utility: - 0.08, P = 0.161). Controlling for depression and cognition and their interaction terms with apathy did not change the results. CONCLUSION: Apathy is negatively associated with NH resident HRQoL as reported by proxies. Depression and cognitive functioning do not moderate this association. NH residents do not self-report a relationship between apathy and HRQoL. More research is needed to understand caregiver and NH resident attitudes and underlying assumptions regarding apathy and HRQoL.

Apathy: Risk Factor for Mortality in Nursing Home Patients.

OBJECTIVES: To determine the prognostic value of apathy for mortality in patients of somatic (SC) and dementia special care (DSC) nursing home (NH) units. DESIGN: Longitudinal design, secondary analyses of a 2-year, cluster-randomized trial with six measurements, approximately 4 months in between. SETTING: SC and DSC-units of Dutch NHs. PARTICIPANTS: NH-patients of seventeen SC-units (n = 342) and sixteen DCS-units (n = 371). MEASUREMENTS: Data were available for 713 NH-patients, 266 of whom died during the study. Apathy was assessed using the 10-item Apathy Evaluation Scale (AES-10) and applied as categorical variable using known cut-off scores as well as dimensional variable. Additionally, depressive symptoms were assessed using the Cornell Scale for Depression in Dementia. RESULTS: Mixed effects cox models using the coxme package in R revealed a higher risk of mortality between two measurements, if apathy was present (hazard ratio (HR) = 1.77; 95% confidence interval (CI] = 1.35-2.31, P < .001). Results remained significant (HR = 1.64; 95% CI = 1.23-2.19, P < .001) when controlled for depressive symptoms. DSC-units and SC-units did not differ (P > .05) in the effect of apathy on mortality. Male gender (HR = 1.67; 95% CI = 1.23-2.27, P < .001), and higher age in years (HR = 1.06; 95% CI = 1.04-1.08, P < .001) were also predictors of mortality. Regarding apathy as a dimensional construct, one standard deviation increase of AES-10 scores was associated with a 62% increase of mortality risk (HR = 1.62, 95% CI = 1.40-1.88, P < .001). CONCLUSIONS: Apathy was associated with mortality over a 4-month period in NH patients, even when controlling for depression. These data suggest that screening and treatment strategies for apathy should be developed for this patient population.