Distress Care Research Articles

Non-pharmacological interventions for sleep disturbances in people with dementia.

Non-pharmacological interventions for sleep disturbances in people with dementia.

Carer distress among community living older adults with complex needs in the pre- and post-COVID-19 era: a national population study

Carer distress is one important negative impact of caregiving and likely exacerbated by the novel coronavirus disease 2019 (COVID-19) pandemic, yet little population-based epidemiological information exists. Using national data from repeated standardized comprehensive geriatric needs assessments, this study aims to: describe the pattern of caregiver distress among those providing informal care to community-living adults aged ≥ 65 years with complex needs in New Zealand over time; estimate the COVID-19 effect on this temporal pattern; and, investigate relationships between participants’ sociodemographic and selected health measures on caregiver distress. Fractional polynomial regression and multivariable multilevel mixed-effects models were employed. Overall, 231,277 assessments from 144,358 participants were analysed. At first assessment, average age was 82.0 years (range 65–107 years), and 85,676 (59.4%) were female. Carer distress prevalence increased from 35.1% on 5 July 2012 to a peak of 48.5% on 21 March 2020, when the New Zealand Government announced a national lock-down. However, the population attributional fraction associated with the COVID-19 period was small, estimated at 0.56% (95% CI 0.35%, 0.77%). Carer distress is common and has rapidly increased in recent years. While significant, the COVID-19 impact has been relatively small. Policies and services providing efficacious on-going strategies to support caregivers deserves specific attention.

Plasma Myeloperoxidase as a Potential Biomarker of Patient Response to Anti-Dementia Treatment in Alzheimer's Disease.

Myeloperoxidase (MPO), a neutrophil-derived pro-inflammatory protein, co-localizes with amyloid-β (Aβ) plaques in Alzheimer's disease (AD). Anti-dementia treatment may facilitate efflux of Aβ and associated plaque proteins from the brain to the peripheral circulation, therefore providing potential biomarkers for the monitoring of donor response to drug treatment. We investigated the diagnostic utility of MPO as a biomarker of AD, and how anti-dementia treatment alters plasma MPO concentration. Thirty-two AD patients were recruited, and plasma collected pre-drug administration (baseline), and 1- and 6-months post-treatment. All patients received cholinesterase inhibitors (ChEIs). At baseline and 6 months, patients underwent neuropsychological assessment. Forty-nine elderly healthy individuals with normal cognitive status served as controls. Plasma MPO concentration was measured by ELISA. AD drug naïve patients had similar plasma MPO concentration to their control counterparts (p > 0.05). Baseline MPO levels positively correlated with Neuropsychiatric Inventory score (r = 0.5080; p = 0.011) and carer distress (r = 0.5022; p = 0.012). Following 1-month ChEI treatment, 84.4% of AD patients exhibited increased plasma MPO levels (p < 0.001), which decreased at 6 months (p < 0.001). MPO concentration at 1 month was greatest in AD patients whose memory deteriorated during the study period (p = 0.028), and for AD patients with deterioration in Cornell assessment score (p = 0.044). Whereas baseline MPO levels did not differentiate between healthy and AD populations, baseline MPO positively correlated with initial Neuropsychiatric Inventory evaluation. Post-treatment, transient MPO upregulation in ChEI-treated patients may reflect worse therapeutic outcome. Further studies are required to assess the potential of plasma MPO as an AD therapeutic biomarker.

Effects of an e-health intervention ‘iSupport’ for reducing distress of dementia carers: protocol for a randomised controlled trial and feasibility study

IntroductionIn the UK, National Health Service (NHS) guidelines recommend that informal carers of people living with dementia should be offered training to help them develop care skills and manage their...

Carer burden and psychological distress in young-onset dementia: An Australian perspective.

ObjectivesCarer burden in dementia is associated with poor outcomes, including early nursing home placement for people with dementia and psychological distress for their carers. Carers of people with young‐onset dementia (YOD) are particularly vulnerable to carer burden. Yet they are often overlooked by clinicians as dementia services are generally designed for older people. We sought to estimate the rate of burden and psychological distress in carers of YOD at a state‐wide tertiary service based in Australia.MethodsWe conducted a cross‐sectional study examining 71 dyads from a Neuropsychiatry service. We collected patient demographic and clinical data including the Neuropsychiatry Unit Cognitive Assessment tool (NUCOG) and Mini‐Mental State Examination (MMSE). Carer data, such as demographics and psychological distress, were obtained using Depression Anxiety Stress Scale 21 (DASS‐21). Carer burden was rated using the Zarit Burden Inventory‐short version (ZBI).ResultsHigher carer burden, measured using ZBI, was associated with longer duration of dementia and greater severity of overall cognitive impairment. Carers who felt burdened reported higher levels of stress, depression, and anxiety measured using DASS‐21. Multiple linear regression analysis found carer burden was independently predicted by duration of dementia, total cognition score and carers experiencing psychological stress.DiscussionWe found that patient variables of dementia duration and cognitive impairment and carer variable of carer stress to be associated with carer burden. Poor executive function was associated with carer stress. Early identification and management of carer burden and psychological distress is important for outcomes. Ideally, this should be provided by a specialist YOD service.

LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives.

BackgroundAwareness of the specific needs of LGBTQI cancer patients has led to calls for inclusivity, cultural competence, cultural safety and cultural humility in cancer care. Examination of oncology healthcare professionals’ (HCP) perspectives is central to identifying barriers and facilitators to inclusive LGBTQI cancer care.Study AimThis study examined oncology HCPs perspectives in relation to LGBTQI cancer care, and the implications of HCP perspectives and practices for LGBTQI patients and their caregivers.Method357 oncology HCPs in nursing (40%), medical (24%), allied health (19%) and leadership (11%) positions took part in a survey; 48 HCPs completed an interview. 430 LGBTQI patients, representing a range of tumor types, sexual and gender identities, age and intersex status, and 132 carers completed a survey, and 104 LGBTQI patients and 31 carers undertook an interview. Data were analysed using thematic discourse analysis.ResultsThree HCP subject positions – ways of thinking and behaving in relation to the self and LGBTQI patients – were identified:’Inclusive and reflective’ practitioners characterized LGBTQI patients as potentially vulnerable and offered inclusive care, drawing on an affirmative construction of LGBTQI health. This resulted in LGBTQI patients and their carers feeling safe and respected, willing to disclose sexual orientation and gender identity (SOGI) status, and satisfied with cancer care. ‘Egalitarian practitioners’ drew on discourses of ethical responsibility, positioning themselves as treating all patients the same, not seeing the relevance of SOGI information. This was associated with absence of LGBTQI-specific information, patient and carer anxiety about disclosure of SOGI, feelings of invisibility, and dissatisfaction with healthcare. ‘Anti-inclusive’ practitioners’ expressed open hostility and prejudice towards LGBTQI patients, reflecting a cultural discourse of homophobia and transphobia. This was associated with patient and carer distress, feelings of negative judgement, and exclusion of same-gender partners.ConclusionDerogatory views and descriptions of LGBTQI patients, and cis-normative practices need to be challenged, to ensure that HCPs offer inclusive and affirmative care. Building HCP’s communicative competence to work with LGBTQI patients needs to become an essential part of basic training and ongoing professional development. Visible indicators of LGBTQI inclusivity are essential, alongside targeted resources and information for LGBTQI people.

Cognitive decline and dementia: does delirium matter?

Delirium, an acute change in arousal, attention, and other aspects of cognition, affects more than one in five older inpatients, causes distress for patients and carers, and is associated with in-hospital complications, functional decline, and mortality.1 Delirium is costly for society, and evidence-based preventive measures should be implemented in routine clinical practice.2 Research has indicated that delirium might be associated with long-term cognitive decline and dementia.3

Psychological distress of young carers: A questionnaire survey among Saitama prefectural high school students

Objectives Research suggests that Japan has a substantial number of young carers-that is, children who provide care to their family members. However, little is known about the effects of the burden of caring on their mental health. This cross-sectional study was conducted to investigate the relationship between caring roles and psychological distress among high school students, and discuss the effects of the burden of caring on young carers' mental health.Methods We conducted a questionnaire survey among 4,550 high school students from 11 prefectural schools in Saitama Prefecture, Japan; questions were on family members and students' caring roles. Psychological distress was assessed using the Kessler 6 scale (K6)-a modified version of the scale's official Japanese translation was used to make it easy for the students to understand the questions. Two types of regression analysis (i.e., multiple regression analysis and ordinal logistic regression analysis) were performed to investigate the relationship between caring roles and psychological distress with adjustment for potential confounding factors.Results A total of 3,917 valid questionnaires were collected; from these, 3,557, from those aged 15-25, having all the required information were analyzed. Of the 3,557 respondents, 23 (0.6%) were aged 19 and five (0.1%) were aged 20 or above. It was found that 34 (1.0%) provided care to infant siblings without disability, illness, or other special needs (Young Carers A), and 190 (5.3%) provided care to family members with disability, illness, or other special needs (Young Carers B). The remaining 3,333 (93.7%) (those who did not provide care to their family members) made up the control group. The two types of regression analysis yielded similar results, and both indicated a significant relationship between caring roles and psychological distress (P=0.003 and P<0.001, respectively). The results of ordinal logistic regression analysis revealed that the odds ratio for psychological distress as assessed by the K6 for Young Carers B was 1.572, which was significantly higher than that for the control group (P<0.001); in contrast, the same for Young Carers A was 1.666, which was not statistically significant (P=0.084) but higher than that for the control group and close to the one for Young Carers B.Conclusion The results suggest that care burden may have adverse effects on young carers' mental health.

Perceived social support and distress in carers of people with lung cancer: The serial mediation of resilience and positive aspects of caregiving.

To determine the mediating roles of resilience and positive aspects of caregiving (PAC) in the effect of perceived social support (PSS) on distress. This study, with a cross-sectional design, was conducted in a Chinese hospital. Instruments included the Multidimensional Scale of Perceived Social Support, Chinese version Connor-Davidson Resilience Scale, Positive Aspects of Caregiving, and the Depression, Anxiety, Stress Scales-21. Descriptive analysis and serial mediation analysis were conducted by SPSS 22.0. Data from 300 Chinese carers of people with lung cancer was used. The correlation analysis showed that PSS, resilience, and PAC were protective factors of distress. The mediation analysis revealed that resilience and PAC separately and serially mediated the effect of PSS on distress. Carers of people with lung cancer perceived positive and negative caregiving experiences simultaneously. PSS could alleviate distress by enhancing resilience and promoting PAC. Multicomponent interventions integrating PSS, resilience, and PAC should be designed to alleviate distress among Chinese carers of people with lung cancer.

Observed effects of the COVID-19 pandemic on the life satisfaction, psychological distress and loneliness of Australian carers and non-carers

Using six waves of longitudinal data, we investigate wellbeing, psychological distress and loneliness differences between informal carers and non-carers in the context of COVID-19-related policy changes in Australia. Wellbeing levels fluctuated along with the virus case numbers. Free childcare temporarily alleviated the disparity between carers and non-carers, but by its cessation, carers, in particular, reported lower wellbeing and higher psychological distress. Wage subsidies and income supports had opposing effects for carers’ and non-carers’ mental health but decreased the loneliness of both groups. Victorians, living in the state where the second wave of infections in Australia was concentrated, experienced worse outcomes than other Australians.

The relationship between perceived social support and psychological distress in carers of older relatives: A longitudinal cross-lagged analysis

Background and objectivesAlthough a large body of research has examined the relationship between social support and psychological health of family carers of frail older people, the exact nature and direction of this relationship is not well understood with most research to date being cross-sectional. This longitudinal study explored the relationship between perceived social support and psychological distress in carers of older relatives. MethodsWe used data from two longitudinal cohorts which included a total of 332 family carers of frail older people. We used cross-lagged panel analysis to investigate the longitudinal association between perceived social support and carer psychological distress controlling for a number of covariates over time. ResultsFully-adjusted Generalised Estimating Equations (GEE) and cross-lagged models indicated that higher social support was significantly associated with lower carer psychological distress over time (regression coefficient [B] = -0.178, standard error [SE] = 0.028), with levels of perceived social support exerting an effect on psychological distress rather than vice versa (β = 0.03, p = 0.32). LimitationsAll observations were based on self-report data, and there may be other variables that may explain the results that we did not account for. Discussion and implicationsOur study finds that the directionality of the relationship appears to be from perceived social support to carer psychological distress suggesting that social support directly affects carer psychological health but not vice versa. This finding has important implications for the provision of social support interventions for carers of frail older people at risk of experiencing psychological distress.

"It's Always Been a Second Class Cancer": An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma.

Simple SummarySarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas are different to other types of cancer. Differences include the fast progression of the cancer and late diagnoses. This leads to distress for patients and carers, which can lead to negative experiences for carers after bereavement. In this this study we aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. We conducted interviews with sixteen bereaved carers and found that bereaved carers thought about their experiences as a journey.Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.

Barriers to health care reported by carers of older Australians: new evidence from the 2018 Survey of Disability, Ageing and Carers.

Carers play an important role in assisting older care recipients with their daily lives and attending to their health care. Yet research has largely overlooked the barriers to health care that carers of older Australians themselves experience. This study finds that, among those attempting to access care, approximately 31.2% of carers of older Australians reported a barrier to health care, with one-third of this group reporting barriers at many points in the healthcare system. Barriers to care were considerable for those attempting to access dental, GP and medical specialist services (27.8%, 18.3% and 15.2% respectively), but lower for accessing hospital services (8.6%). People living with a disability or those in high carer distress had a minimum threefold increase in the odds of experiencing a barrier to care, with odds ratios (95% confidence intervals) of 3.35 (2.10-5.36) and 3.37 (2.33-4.88) respectively. Carers of older Australians noted cost as an important barrier to care, but between 20% and 40% cited being too busy or not having enough time to access dental, GP and medical specialist services (21%, 39% and 26% respectively). Addressing the barriers to health care reported by carers is critical not only to their own health and well-being, but also to that of care recipients.

The Role of Self-Compassion, Dispositional Mindfulness, and Emotion Regulation in the Psychological Health of Family Carers of Older Adults

ABSTRACT Objectives This study explored the role of compassion and dispositional mindfulness in the psychological health of family carers of older adults and tested for potential mediating effects of emotion regulation difficulties and adaptive coping strategies. Methods A sample of 141 family carers of adults aged 65 years or older with chronic conditions completed a cross-sectional survey between July – December 2019. The survey included self-report scales that measured: self-compassion, compassion for others, compassion from others, dispositional mindfulness, depression, anxiety, stress, emotion- and problem-focused coping strategies, and difficulties in emotion regulation. Results Path analyses found that increased self-compassion and increased dispositional mindfulness was associated with lower psychological distress, and that this was mediated by reduced difficulties in emotion regulation. The model had excellent fit, explaining 64.8% of the variance in psychological distress, and 52.2% of the variance in emotion regulation difficulties. Conclusions Self-compassion and dispositional mindfulness may help buffer the psychological distress of family carers of older adults, and adaptive emotion regulation is an important mechanism of change in these relationships. Clinical Implications Interventions that aim to cultivate self-compassion and mindfulness could be clinically useful in reducing psychological distress within populations of family carers of older adults by promoting adaptive emotion regulation.

Pharmacotherapies for sleep disturbances in dementia.

Abstract available in English Español فارسی Français 한국어 Português ภาษาไทย 简体中文

A prospective study monitoring carer distress during (chemo)radiotherapy for head and neck cancer via an electronic platform.

IntroductionResearch has shown that electronic platforms can assist data capture of patient‐reported outcome measures (PROMs) to guide clinical care. In comparison, routine collection of carer‐reported outcome measures (CROMs) to support the patient–carer dyad during cancer treatment has had limited attention. The current study utilised a novel electronic CROM (eCROM) system, ScreenIT Carer, to monitor the prevalence and nature of distress in carers of patients undergoing (chemo)radiotherapy ((C)RT) for head/neck cancer (HNC), and explore factors associated with carer distress.MethodsCarers completed ScreenIT Carer weekly when attending patients’ (C)RT treatment sessions from planning to 2 weeks post‐treatment. ScreenIT Carer included the Distress Thermometer (DT) and Problem List, and a purpose‐built Mealtime‐Specific DT and Problem list. Data were first examined descriptively, then associations between demographic/treatment‐related factors and distress severity were analysed using mixed‐effects general linear modelling.Results135 carers provided 434 ScreenIT Carer entries during the study period (mean entries = three/carer; yielding average adherence rate of 41% (range 11–100%)). A high prevalence of general (59%) and mealtime‐specific distress (46%) was reported by carers. Nature of distress was multifactorial, with emotional problems and the patients’ physical condition/symptoms common contributing factors. Based on multivariate analysis, tumour site, geographical location of residence and time during (C)RT when ScreenIT Carer was completed were significant predictors of carer distress severity.ConclusionsCarer distress is prevalent and multifactorial during (C)RT. This study highlights the feasibility of utilising eCROM platforms such as ScreenIT Carer, to monitor carer wellbeing and guide supportive care services as part of a holistic care pathway.

From the carer's mouth: A phenomenological exploration of carer experiences with head and neck cancer patients.

Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer. This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semi-structured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences. Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects. Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for practice include screening for carer distress and providing specific interventions focused on caring for someone diagnosed with head and neck cancer.

The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer's disease and dementia with Lewy bodies.

The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. Prospective cohort study. Participants were recruited from the Dementia Study of Western Norway (DemVest). This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer's disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = -137; CI, -209, -64.5), having limitations on social life (estimate = -118; CI, -172, -64), not being able to get away on vacation (estimate -116; CI, -158.3, -73.7), and feeling unable to cope with the situation (estimate = -63; CI, -122.6, -3.4). Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA.

Perspectives of crisis intervention for people diagnosed with "borderline personality disorder": An integrative review.

WHAT IS KNOWN ON THE SUBJECT?: People diagnosed with "BPD" often experience crisis and use services "BPD" is a controversial diagnosis, and the experience of crisis and crisis intervention is not well understood WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: People diagnosed with "BPD" have different experiences of crisis, and using the diagnosis alone as a basis for deciding care and treatment is not appropriate There are many human factors which can influence how professionals deliver care to people diagnosed with "BPD" WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The education of staff, views on responsibility, team conflicts and access to clinical supervision can have an impact on how care is delivered, and should be addressed by organizations providing crisis care. Access to care often occurs when a person is self-harming or suicidal, but does not address underlying distress. Crisis care should go beyond managing behaviour and address any underlying needs. ABSTRACT: Introduction "Borderline personality disorder" ("BPD") is associated with frequent use of crisis intervention services. However, no robust evidence base supports specific interventions, and people's experiences are not well understood. Aim To explore the experiences of stakeholders involved in the crisis care of people diagnosed with "BPD." Method Integrative review with nine databases searched January 2000 to November 2017. The search filtered 3,169 titles and abstracts with 46 full-text articles appraised and included. Results Four themes were constructed from thematic analysis: crisis as a recurrent multidimensional cycle, variations and dynamics impacting on crisis intervention, impact of interpersonal dynamics and communication on crisis, and balancing decision-making and responsibility in managing crisis. Discussion Crisis is a multidimensional subjective experience, which also contributes to distress for family carers and professionals. Crisis interventions had limited and subjective benefit. They are influenced by accessibility of services, different understandings of "BPD" and human dynamics in complex decision-making, and can be experienced as helpful or harmful. Implications for practice Subjectivity of crisis experiences shows limitations of the diagnostic model of "BPD," emphasizing that interventions should remain person-centred. While thresholds for intervention are often met after self-harm or suicidality, professionals should review approaches to care and support people with underlying distress.

Infant microbiota in colic: predictive associations with problem crying and subsequent child behavior.

Infant colic is a condition of unknown cause which can result in carer distress and attachment difficulties. Recent studies have implicated the gut microbiota in infant colic, and certain probiotics have demonstrated possible efficacy. We aim to investigate whether the intestinal microbiota composition in infants with colic is associated with cry/fuss time at baseline, persistence of cry/fuss at 4-week follow-up, or child behavior at 2 years of age. Fecal samples from infants with colic (n = 118, 53% male) were analyzed using 16S rRNA sequencing. After examining the alpha and beta diversity of the clinical samples, we performed a differential abundance analysis of the 16S data to look for taxa that associate with baseline and future behavior, while adjusting for potential confounding variables. In addition, we used random forest classifiers to evaluate how well baseline gut microbiota can predict future crying time. Alpha diversity of the fecal microbiota was strongly influenced by birth mode, feed type, and child gender, but did not significantly associate with crying or behavioral outcomes. Several taxa within the microbiota (including Bifidobacterium, Clostridium, Lactobacillus, and Klebsiella) associate with colic severity, and the baseline microbiota composition can predict further crying at 4 weeks with up to 65% accuracy. The combination of machine learning findings with associative relationships demonstrates the potential prognostic utility of the infant fecal microbiota in predicting subsequent infant crying problems.