Apathy In People Research Articles

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

BackgroundAlthough 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).MethodsDescriptive 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.ResultsThree 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.ConclusionsWhen 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.

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.

Contributions of macrostructural and microstructural white matter damage to apathy in people with Alzheimer’s disease

AbstractBackgroundApathy is the most common neuropsychiatric symptom in Alzheimer’s disease (AD) that affects patients’ quality of life and prognosis. Previous functional neuroimaging studies have found multiple cerebral alterations suggesting a conceptualisation of apathy as a symptom resulting from a communication breakdown among functional neural networks involved in motivational‐affective processing. To test this hypothesis, this study investigated the association between white matter (WM) structural connectivity and apathy in AD.MethodSixty‐one patients with (AD‐AP) and 61 without apathy (AD‐NA) were identified from the ADNI database and matched for diagnosis, cognitive status, age and education. A group of 61 matched healthy older adults (HOA) was also included. Data on cognitive performance, cerebrospinal fluid (CSF) biomarkers, brain volumes and mean DTI indices of 50 WM tracts were extracted for all participants. Cognitive profiles and volumetric/DTI data were compared across groups using general linear models including sex as a covariate. Post hoc analyses were performed to investigate pair‐wise differences in all outcome measures.ResultBoth patient groups showed widespread cognitive deficits and neural alterations, lower amyloid beta and higher phosphorylated tau CSF levels compared to the HOA group. The direct AD‐AP vs AD‐NA comparison showed no significant differences in CSF biomarkers and MRI outcomes, but the AD‐AP group had more severe neuropsychiatric symptoms, lower scores on the Clock Test – copy and relied more on cues in the Logical Memory test – delayed recall. When the patient groups were compared to the HOA independently, the AD‐AP group had more extensive WM damage: 1) reduced WM and larger WM hyperintensity volume; 2) increased radial diffusivity and reduced fractional anisotropy primarily in the cingulum, superior longitudinal and inferior fronto‐occipital fasciculi and genu of the corpus callosum.ConclusionAD‐AP patients had WM damage mildly more severe than that observed in AD‐NA, especially in associative tracts in the frontal lobes and the cingulum. Such disruption in structural connectivity might affect crucial functional inter‐network communication resulting in motivational deficits and worse cognitive decline. These findings warrant further investigations to ascertain the relationship between WM damage and disruption of functional brain network dynamic interactions in AD patients with apathy.

Dimensions of apathy in Parkinson's disease.

Apathy is one of the most common neuropsychiatric manifestations in Parkinson's disease (PD). Recent proposals consider apathy as a multidimensional construct, which can manifest in behavioral, cognitive, emotional, and/or social dimensions. Apathy also overlaps conceptually and clinically with other non-motor comorbidities, particularly depression. Whether all of these dimensions are applicable to the apathetic syndrome experienced by people with PD is unclear. In the present study, we investigated the multidimensional pattern of apathy associated with PD, using the recently developed Apathy Motivation Index (AMI) which probes behavioral, emotional, and social apathy dimensions. We then examined the relationship between these dimensions and other features of PD commonly associated with apathy, including depression, anxiety, cognition, and motor state. A total of 211 participants were identified from the New Zealand Brain Research Institute (NZBRI) longitudinal PD cohort. One hundred eight patients and 45 controls completed the AMI, administered as an online questionnaire, and additional assessments including neuropsychiatric, neuropsychological, and motor scores. The pattern of dimensional apathy in PD was assessed using a repeated-measured analysis of variance, while simple linear regressions were performed to evaluate relationships between these dimensions and other variables. We found a significant interaction between group (PD versus control) and apathy subscale, driven mainly by higher levels of social and behavioral-but not emotional-apathy in those with PD. This result was strikingly similar to a previous study investigating social apathy in PD. Distinct patterns of dimensional apathy were associated with depression and anxiety, with social and behavioral apathy positively associated with depression, and emotional apathy negatively associated with anxiety. This work provides further evidence for a distinct pattern of apathy in people with PD in which deficits manifest in some-but not all-dimensions of motivated behavior. It emphasizes the importance of considering apathy as a multidimensional construct in clinical and research settings.

Virtual Group Music Therapy for Apathy in Parkinson's Disease: A Pilot Study.

To evaluate the effect of virtual group music therapy on apathy in people with Parkinson's disease (PD). Apathy affects 40% of people with PD, lacks effective therapies, and independently predicts poorer quality of life and greater caregiver burden. Music therapy is the clinical application of music to address a person's physical or emotional needs and is effective in treating apathy in dementia. People with idiopathic PD and apathy (Movement Disorders Society-Unified Parkinson's Disease Rating Scale, apathy item ≥ 2) and their caregivers participated in twelve, weekly virtual group music therapy sessions, with session attendance signifying adherence. Participants completed pre- and post-intervention assessments of apathy (Apathy Scale (AS)), quality of life (Parkinson's Disease Questionnaire-short form), functional ability (Schwab & England Activities of Daily Living Scale), depression (Beck Depression Inventory (BDI-II)), and cognition (Montreal Cognitive Assessment-Blind). Among secondary outcomes, we assessed caregiver burden (Zarit Burden Interview-short form) and strain (Multidimensional Caregiver Strain Index). Sixteen PD participants (93.8% men, mean age 68.3 ± 8.4years, median 6 years PD duration) and their caregivers (93.8% women, mean age 62.6 ± 11years) completed the study. All PD participants and 88% of caregivers were >70% adherent to the intervention. Apathy (AS, effect size = 0.767, P = 0.002) and depression (BDI-II, effect size = 0.542, P = 0.03) improved, with no change in caregiver measures. Group music therapy is an effective treatment for apathy in PD and may improve mood. The virtual format is a feasible alternative to in-person sessions with high adherence and satisfaction.

Medial prefrontal transcranial alternating current stimulation for apathy in Huntington's disease

We investigated the effects of transcranial alternating current stimulation (tACS) targeted to the bilateral medial prefrontal cortex (mPFC) and administered at either delta or alpha frequencies, on brain activity and apathy in people with Huntington's disease (HD) (n = 17). Given the novelty of the protocol, neurotypical controls (n = 20) were also recruited. All participants underwent three 20-min sessions of tACS; one session at alpha frequency (Individualised Alpha Frequency (IAF), or 10 Hz when an IAF was not detected); one session at delta frequency (2 Hz); and a session of sham tACS. Participants completed the Monetary Incentive Delay (MID) task with simultaneous recording of EEG immediately before and after each tACS condition. The MID task presents participants with cues signalling potential monetary gains or losses that increase activity in key regions of the cortico-basal ganglia-thalamocortical networks, with dysfunction of the latter network being implicated in the pathophysiology of apathy. We used the P300 and Contingent Negative Variation (CNV) event-related potentials elicited during the MID task as markers of mPFC engagement. HD participants' CNV amplitude significantly increased in response to alpha-tACS, but not delta-tACS or sham. Neurotypical controls' P300 and CNV were not modulated by any of the tACS conditions, but they did demonstrate a significant decrease in post-target response times following alpha-tACS. We present this as preliminary evidence of the ability of alpha-tACS to modulate brain activity associated with apathy in HD.

Altered nucleus accumbens functional connectivity precedes apathy in Parkinson's disease.

Work in animal and human neuroscience has identified neural regions forming a network involved in the production of motivated, goal-directed behaviour. In particular, the nucleus accumbens and anterior cingulate cortex are recognized as key network nodes underlying decisions of whether to exert effort for reward, to drive behaviour. Previous work has convincingly shown that this cognitive mechanism, known as effort-based decision making, is altered in people with Parkinson's disease with a syndrome of reduced goal-directed behaviour-apathy. Building on this work, we investigated whether the neural regions implementing effort-based decision-making were associated with apathy in Parkinson's disease, and more importantly, whether changes to these regions were evident prior to apathy development. We performed a large, multimodal neuroimaging analysis in a cohort of people with Parkinson's disease (n = 199) with and without apathy at baseline. All participants had ∼2-year follow-up apathy scores, enabling examination of brain structure and function specifically in those with normal motivation who converted to apathy by ∼2-year follow-up. In addition, of the people with normal motivation, a subset (n = 56) had follow-up neuroimaging data, allowing for examination of the 'rate of change' in key nodes over time in those who did, and did not, convert to apathy. Healthy control (n = 54) data were also included to aid interpretation of findings. Functional connectivity between the nucleus accumbens and dorsal anterior cingulate cortex was higher in people with normal motivation who later converted to apathy compared to those who did not, whereas no structural differences were evident between these groups. In contrast, grey matter volume in these regions was reduced in the group with existing apathy. Furthermore, of those with normal motivation who had undergone longitudinal neuroimaging, converters to apathy showed a higher rate of change in grey matter volume within the nucleus accumbens. Overall, we show that changes in functional connectivity between nucleus accumbens and anterior cingulate cortex precedes apathy in people with Parkinson's disease, with conversion to apathy associated with higher rate of grey matter volume loss in nucleus accumbens, despite no baseline differences. These findings significantly add to an accumulating body of transdiagnostic evidence that apathy arises from disruption to key nodes within a network in which normal goal-directed behaviour is instantiated, and raise the possibility of identifying those at risk for developing apathy before overt motivational deficits have arisen.

Experiences and understanding of apathy in people with neurocognitive disorders and their carers: a qualitative interview study

apathy, defined as reduced goal-directed activity, interests and emotion, is highly prevalent in neurocognitive disorders (NCDs). Apathy has important consequences for the individuals who experience it and their carers, yet the lived experiences of apathy in this population are not well understood. to explore how people with NCDs and their carers understand and experience apathy. in-depth semi-structured interviews were conducted in participants' homes. Sixteen people with NCDs (dementia or mild cognitive impairment) and 14 carers, living in four geographical areas of England, took part. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using reflexive thematic analysis. four themes were generated: 'Apathy is Poorly Understood'; 'Too much trouble: Mediating Effort and Outcome'; 'Preserving Identity in the Face of Loss of Capability and Autonomy' and 'Opportunity and Exclusion'. apathy is experienced as an understandable response to the everyday struggle people with NCDs face to preserve identity in the face of threats to capability and autonomy and is exacerbated by the lack of support and opportunities. Social and environmental modifications may help reduce apathy. In line with previous qualitative research, this challenges the dominant view of apathy as a neuropsychiatric symptom that excludes the social-environmental context.

Hypothalamic Functional Connectivity and Apathy in People with Alzheimer's Disease and Cognitively Normal Healthy Controls.

Earlier studies have described the neural markers of apathy in Alzheimer's disease (AD) and mild cognitive impairment (MCI), but few focused on the motivation circuits. Here, we targeted hypothalamus, a hub of the motivation circuit. To examine hypothalamic resting state functional connectivity (rsFC) in relation to apathy. We performed whole-brain regression of hypothalamic rsFC against Apathy Evaluation Scale (AES) total score and behavioral, cognitive, and emotional subscores in 29 patients with AD/MCI and 28 healthy controls (HC), controlling for age, sex, education, cognitive status, and depression. We evaluated the results at a corrected threshold and employed path analyses to assess possible interaction between hypothalamic rsFCs, apathy and depression/memory. Finally, we re-examined the findings in a subsample of amyloid-β-verified AD. AES total score correlated negatively with hypothalamic precuneus (PCu)/posterior cingulate cortex (PCC) and positively with left middle temporal gyrus (MTG) and supramarginal gyrus rsFCs. Behavioral subscore correlated negatively with hypothalamic PCu/PCC and positively with middle frontal gyrus rsFC. Cognitive subscore correlated positively with hypothalamic MTG rsFC. Emotional subscore correlated negatively with hypothalamic calcarine cortex rsFC. In path analyses, hypothalamic-PCu/PCC rsFC negatively modulated apathy and, in turn, depression. The model where hypothalamic MTG rsFC and memory independently modulated apathy also showed a good fit. The findings of diminished hypothalamic-PCu/PCC rsFC in relation to apathy and, in turn, depression were confirmed in amyloid-verified AD. The findings together support a role of altered hypothalamic connectivity in relation to apathy and depression, and modulation of apathy by memory dysfunction.

Motivationally salient cue processing measured using the monetary incentive delay (MID) task with electroencephalography (EEG): A potential marker of apathy in Huntington's disease

We explored the utility of the Monetary Incentive Delay (MID) task with concurrent encephalography (EEG) as a marker of apathy in people with Huntington's disease (HD) as well as neurotypical controls. Specifically, we assessed between and within-group differences in the amplitude of the P300 and Contingent Negative Variation (CNV) event-related potentials as a function of motivational salience. In contrast to neurotypical controls, HD participants' ERP amplitudes were not differentially modulated by motivationally salient cues (i.e., signalling potential ‘gain’ or ‘loss’) compared to ‘neutral’ cues. Difference waves isolating amplitude specific to the motivationally salient cues were calculated for the P300 and CNV. Only the difference waves for ERPs elicited by ‘gain’ cues differentiated the groups. The CNV difference wave was also significantly correlated with clinical measures of apathy and processing speed in the HD group. These findings provide initial support for the use of the MID with EEG as a marker of apathy in HD, and its potential as a sensitive outcome measure for novel treatment development.

Astrocyte activation as a mechanism underlying apathy in people with HIV

Astrocyte activation as a mechanism underlying apathy in people with HIV

The relationship between meaning in life and apathy in people with Parkinson's disease: a cross-sectional analysis.

Apathy remains a common and problematic neuropsychiatric feature associated with Parkinson's disease resulting in reductions in health-related quality of life, and effective treatments remain elusive. Meaning in life (MIL) has been implicated in a variety of positive health outcomes, and this study assesses the relationship between apathy and MIL while hoping to identify a potential new interventional target. A cross-sectional sample of 237 PwPD completed surveys to evaluate MIL and a variety of non-motor symptoms (NMS), and a hierarchical regression analysis was conducted to evaluate relationships of interest. Correlational analysis indicated the presence of meaning in life was statistically negatively and moderately to strongly correlated with apathy (r = - 0.60, p < .001). Hierarchical regression analysis results showed that presence of meaning in life explained a total of 48% of variance in apathy. More specifically, the presence of meaning in life (β = - 0.43, p < .001) was associated with apathy after controlling for sociodemographic and other potentially confounding variables. This study demonstrates the significant negative relationship between MIL and apathy. Considering the lack of effective treatments for apathy, which is one of the most disabling symptoms affecting PwPD, identifying a potential target for intervention is exciting. MIL has the potential to offer clinicians a novel intervention to provide a much-needed treatment option to improve both apathy and HRQoL.

STRATEGIES TO RAISE PUBLIC AWARENESS TO COMPLIANCE TO PBB TAXES

The research problems are low public awareness to pay PBB, clear evidence of the benefits of development from PBB, and the lack of enthusiasm by officials to collect PBB. This study aims to determine the village government's efforts to increase public awareness to pay PBB. The research method used was qualitative with data collection techniques using interviews, observation, documentation, and literature related to the research focus. Data were analyzed using the interactive Miles, Huberman, and Saldana models. The results of the study show that increasing public awareness in paying PBB is carried out by holding intense outreach on various occasions. Collaborating with community leaders to provide an understanding of the importance and benefits of PBB, making it easy for people to pay PBB by opening payment counters at the Village Office, and making efforts to improve community data that does not match real conditions on the ground. Factors that influence people's apathy and reluctance to pay taxes are tax data discrepancies with conditions in the field, as well as inadequate facilities. As a recommendation for improvement, there needs to be intense assistance from village officials to provide awareness for the community.

Virtual Reality Intervention for Managing Apathy in People With Cognitive Impairment: Systematic Review.

BackgroundApathy is common in people with cognitive impairment. It leads to different consequences, such as more severe cognitive deficits, rapid functional decline, and decreased quality of life. Virtual reality (VR) interventions are increasingly being used to manage apathy in individuals with cognitive impairment. However, reports of VR interventions are scattered across studies, which has hindered the development and use of the interventions.ObjectiveThis study aimed to systematically review existing evidence on the use of VR interventions for managing apathy in people with cognitive impairment with regard to the effectiveness, contents, and implementation of the interventions.MethodsThe PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. The PubMed, Embase, CINAHL, and PsycINFO databases were systematically searched for experimental studies published up to March 13, 2022, that reported the effects of VR interventions on apathy in older adults with cognitive impairment. Hand searching and citation chasing were conducted. The results of the included studies were synthesized by using a narrative synthesis. Their quality was appraised by using the Effective Public Health Practice Project quality assessment tool. However, because the VR interventions varied in duration, content, and implementation across studies, a meta-analysis was not conducted.ResultsA total of 22 studies were identified from the databases, of which 6 (27%) met the inclusion criteria. Of these 6 studies, 2 (33%) were randomized controlled trials, 1 (17%) was a controlled clinical trial, and 3 (50%) were quasi-experimental studies. Individual studies showed significant improvement in apathy and yielded within-group medium to large effect sizes. The level of immersion ranged from low to high. Minor adverse effects were reported. The VR content mostly included natural scenes, followed by city views and game-based activities. A background soundtrack was often used with natural scenes. Most (5/6, 83%) of the studies were conducted in a residential care setting and were implemented by health care professionals or researchers. Safety precautions were taken in most (5/6, 83%) of the studies.ConclusionsAlthough preliminary evidence shows that VR interventions may be effective and feasible for alleviating apathy in people with cognitive impairment, the methodological limitations in the included studies make it difficult to reach a firm conclusion on these points. The implementation of the interventions was highlighted and discussed. More rigorous studies are encouraged.Trial RegistrationPROSPERO International Prospective Register of Systematic Reviews CRD42021268289; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021268289

Technology-based interventions as an approach to treating apathy in people with dementia.

Technology-based interventions as an approach to treating apathy in people with dementia.

Astrocyte Activation is A Potential Mechanism Underlying Depressed Mood and Apathy in People with HIV.

Astrocytes become activated with certain infections, and this might alter the brain to trigger or worsen depressed mood. Indeed, astrocytes are chronically activated in people with HIV infection (PWH), who are much more frequently depressed than people without HIV (PWoH). A particularly disabling component of depression in PWH is apathy, a loss of interest, motivation, emotion, and goal-directed behavior. We tested the hypothesis that depression and apathy in PWH would be associated with higher levels of a biomarker of astrocyte activation, glial fibrillary acidic protein (GFAP), in cerebrospinal fluid (CSF). We evaluated PWH in a prospective observational study using the Beck Depression Inventory-II (BDI-II) and additional standardized assessments, including lumbar puncture. We measured GFAP in CSF with a customized direct sandwich ELISA method. Data were analyzed using ANOVA and multivariable regression. Participants were 212 PWH, mean (SD) age 40.9±9.14 years, median (IQR) nadir and current CD4 199 (57, 326) and 411 (259, 579), 65.1% on ART, 67.3% virally suppressed. Higher CSF GFAP correlated with worse total BDI-II total scores (Pearson correlation r=0.158, p-value=0.0211), and with worse apathy scores (r=0.205, p=0.0027). The correlation between apathy/depression and GFAP was not in fluenced by other factors such as age or HIV suppression status. Astrocyte activation, reflected in higher levels of CSF GFAP, was associated with worse depression and apathy in PWH. Interventions to reduce astrocyte activation -- for example, using a peptide-1 receptor (GLP-1R) agonist -- might be studied to evaluate their impact on disabling depression in PWH.

Are the Items of the Starkstein Apathy Scale Fit for the Purpose of Measuring Apathy Post-stroke?

Importance: Given the importance of apathy for stroke, we felt it was time to scrutinize the psychometric properties of the commonly used Starkstein Apathy Scale (SAS) for this purpose.Objectives: The objectives were to: (i) estimate the extent to which the SAS items fit a hierarchical continuum of the Rasch Model; and (ii) estimate the strength of the relationships between the Rasch analyzed SAS and converging constructs related to stroke outcomes.Methods: Data was from a clinical trial of a community-based intervention targeting participation. A total of 857 SAS questionnaires were completed by 238 people with stroke from up to 5 time points. SAS has 14 items, rated on a 4-point scale with higher values indicating more apathy. Psychometric properties were tested using Rasch partial-credit model, correlation, and regression. Items were rescored so higher scores are interpreted as lower apathy levels.Results: Rasch analysis indicated that the response options were disordered for 8/14 items, pointing to unreliability in the interpretation of the response options; they were consequently reduced from 4 to 3. Only 9/14 items fit the Rasch model and therefore suitable for creating a total score. The new rSAS was deemed unidimensional (residual correlations: < 0.3), reasonably reliable (person separation index: 0.74), with item-locations uniform across time, age, sex, and education. However, 30% of scores were > 2 SD above the standardized mean but only 2/9 items covered this range (construct mistargeting). Apathy (rSAS/SAS) was correlated weakly with anxiety/depression and uncorrelated with physical capacity. Regression showed that the effect of apathy on participation and health perception was similar for rSAS/SAS versions: R2 participation measures ranged from 0.11 to 0.29; R2 for health perception was ∼0.25. When placed on the same scale (0–42), rSAS value was 6.5 units lower than SAS value with minimal floor/ceiling effects. Estimated change over time was identical (0.12 units/month) which was not substantial (1.44 units/year) but greater than expected assuming no change (t: 3.6 and 2.4).Conclusion: The retained items of the rSAS targeted domains of behaviors more than beliefs and results support the rSAS as a robust measure of apathy in people with chronic stroke.

The experiences of apathy in people with dementia and mild cognitive impairment and their carers: A qualitative interview study

AbstractBackgroundApathy, defined as reduced goal‐directed activity, social engagement and emotion, is highly prevalent in dementia and Mild Cognitive Impairment (MCI), and has important consequences for the individuals that experience it and those who care for them. However, the lived experiences of this population is not well understood. This study aimed to explore how people with dementia and MCI and their carers experience apathy.MethodPeople with early dementia and MCI living in four geographical areas of England were invited to take part in a qualitative interview. All participants had capacity to give informed consent. In‐depth semi‐structured interviews were conducted with fourteen people with dementia or MCI and carer dyads, and two participants without a carer present. Patient’s mean age was 76 years, Montreal Cognitive Assessment score was 20, and five were female. Interviews, conducted in the participant’s homes, lasted between 38 and 115 minutes, were audio‐recorded and transcribed verbatim. Reflexive thematic analysis was used to analyse the data.ResultFindings were organised into two connected themes: ‘The struggle of everyday life is not worth it’ and ‘Threatened identity: changing sense of self and place in the world’. Participants’ everyday lives required more effort and were a “struggle” due to cognitive and physical impairments. This could make the effort to engage, act, and maintain interest not worth it, resulting in apparent apathy. Motivation to stay engaged despite difficulty was influenced by the accessibility of opportunities, and support from others. Participants views of their (past) autonomous and competent self were challenged by the changes they experienced. Participants sometimes focused on their present capabilities, and did what they were still able, whilst others found changes difficult to accept and withdrew from situations which challenged their sense of self.ConclusionApathy is experienced as a response to the everyday difficulties participants faced, which could be exacerbated by lack of support and opportunities. This is in contrast to the popular view of apathy as a symptom of neurodegenerative changes that occur in dementia. Our findings echo those of qualitative research in people with Parkinson’s Disease (Simpson et al., 2014).

"He Just Doesn't Want to Get Out of the Chair and Do It": The Impact of Apathy in People with Dementia on Their Carers.

Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.

Multidimensional Apathy: The Utility of the Dimensional Apathy Scale in Huntington's Disease.

Apathy is a disorder of motivation common to Huntington's disease (HD). Recent conceptual frameworks suggest that apathy is not unitary but consists of discrete subtypes ("dimensions"). Which of the proposed dimensions are preferentially affected in HD, and how these dimensions evolve with disease progression is unknown. The Dimensional Apathy Scale (DAS) separates apathy into Executive, Initiation and Emotional subscales. Using the DAS, we aimed to: 1) Determine the apathy subtypes prevalent in HD; 2) Compare the DAS against a unitary measure of apathy (Apathy Evaluation Scale, AES); 3) Assess the reliability of self- and observer-ratings; and 4) Determine the relationship between the DAS, and disease burden, total functional capacity (TFC) and the AES. Fifty pre-manifest, 51 manifest-HD, 87 controls, and 50 HD-observers completed the DAS, AES, and TFC. Manifest-HD participants had the highest levels of apathy across all dimensions (30.4% on Executive subscale, 34.8% on Initiation subscale, and 15.2% on Emotional subscale), relative to pre-manifest and control participants. Self- and observer-ratings on the DAS did not differ. Hierarchical regressions across the entire gene-expanded sample showed that scores on the Initiation subscale correlated with AES scores; higher Executive subscale scores were related to higher disease burden; and Emotional subscale scores with lower total functional capacity. In this first study of the DAS in HD, manifest-HD participants were more apathetic than pre-manifest and control participants across all apathy subtypes. The DAS may be a useful tool for measuring different aspects of apathy in people with HD.