Long-Term Partnerships in Lewy Body Dementias

Long-term partnerships are important as they can determine happiness, influence physical and mental health and lengthen one’s lifespan. However, complex neurodegenerative conditions, such as Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB), can disrupt long-term relationships and even lead to dissolution of the partnership. The majority of studies in this field have focused on exploring the effect of PDD and DLB on care partners’ outcomes but the impact of these conditions on dyadic, long term relationships is less well understood. We conducted a series of studies with people with PDD or DLB and their caregiving life partners using quantitative and qualitative methods. We demonstrated that PDD and DLB has a tremendous impact on the caregiving life partners and reduces relationship satisfaction. We argue for more studies in this field and recommend that future research focuses on strengthening dyadic relationships, which can ultimately preserve relationships and delay institutionalisation of the person with PDD and DLB, which has cost saving implications

Psychological outcomes in advanced cancer patients after receiving genomic tumor profiling results

Background: Comprehensive tumor genomic profiling (CGP) offers hope for personalized treatment for cancer patients when other treatment options have been exhausted. However, receipt of nonactionable or ambiguous results could be an ongoing source of distress. We investigated patterns of hope, anxiety, depression, and CGP-specific anxiety in advanced cancer patients after receiving CGP results and 2–3months later. Method: Participants were enrolled in a longitudinal psychosocial substudy, embedded in the Molecular Screening and Therapeutics Program, and had advanced solid cancers of any histological type with sufficient and accessible tissue for CGP. At T0 (before receiving CGP results), 1,431 participants completed sociodemographic, disease and psychosocial measures. At T1 (1–4 weeks after receiving CGP results) and T2 (2–3 months post-T1), 374 participants completed psychological outcome measures. Predictors of outcomes at T2 were identified using multinomial logistic regression. Results: Approximately 75% of participants did not experience significant hopelessness or distress at T1 and T2.Hope decreased by T2, yet general anxiety and CGP-specific anxiety also decreased. Receiving actionable results did not impact psychological outcomes at T2. At T2, lower hope, and higher anxiety, depression and CGP-specific anxiety were associated with lower self-efficacy. Psychological and demo-graphic factors (age, socioeconomic status, language, medical occupation, urban living, family history of cancer) independently predicted one or more psychological trajectories. Worse health status and perceived susceptibility to cancer progression predicted hope and anxiety trajectories. Conclusion: Further research on interventions to best support patients undergoing CGP with high anxiety, hopelessness, fear of cancer progression, and poorer health is urgently needed

Eating disorder outcomes : findings from a rapid review of over a decade of research

Background Eating disorders (ED), especially Anorexia Nervosa (AN), are internationally reported to have amongst the highest mortality and suicide rates in mental health. With limited evidence for current pharmacological and/or psychological treatments, there is a grave responsibility within health research to better understand outcomes for people with a lived experience of ED, factors and interventions that may reduce the detrimental impact of illness and to optimise recovery. This paper aims to synthesise the literature on outcomes for people with ED, including rates of remission, recovery and relapse, diagnostic crossover, and mortality. Methods This paper forms part of a Rapid Review series scoping the evidence for the field of ED, conducted to inform the Australian National Eating Disorders Research and Translation Strategy 2021–2031, funded and released by the Australian Government. ScienceDirect, PubMed and Ovid/MEDLINE were searched for studies published between 2009 and 2022 in English. High-level evidence such as meta-analyses, large population studies and Randomised Controlled Trials were prioritised through purposive sampling. Data from selected studies relating to outcomes for people with ED were synthesised and are disseminated in the current review. Results Of the over 1320 studies included in the Rapid Review, the proportion of articles focused on outcomes in ED was relatively small, under 9%. Most evidence was focused on the diagnostic categories of AN, Bulimia Nervosa and Binge Eating Disorder, with limited outcome studies in other ED diagnostic groups. Factors such as age at presentation, gender, quality of life, the presence of co-occurring psychiatric and/or medical conditions, engagement in treatment and access to relapse prevention programs were associated with outcomes across diagnoses, including mortality rates. Conclusion Results are difficult to interpret due to inconsistent study definitions of remission, recovery and relapse, lack of longer-term follow-up and the potential for diagnostic crossover. Overall, there is evidence of low rates of remission and high risk of mortality, despite evidence-based treatments, especially for AN. It is strongly recommended that research in long-term outcomes, and the factors that influence better outcomes, using more consistent variables and methodologies, is prioritised for people with ED

Resilience in People with Lewy Body Disorders and Their Care Partners: Association with Mental Health, Relationship Satisfaction, and Care Burden

The emergence of cognitive impairment and dementia in people with Lewy body spectrum disorders (LBS) significantly impacts the quality of life of the individual and their care partner. Coping well with the condition may depend, in part, on the degree of psychological resilience or capacity to ‘bounce back’ from adversity. We explored resilience in people with Parkinson’s disease mild cognitive disorder or dementia, or dementia with Lewy bodies, and their care partners, and its relation to outcomes related to their mental well-being and quality of life. This exploratory, cross-sectional study recruited 76 participant-dyads. Resilience, quality of life, depression, anxiety, and relationship satisfaction were evaluated in both members of the dyad. In care partners, care burden and stress were also assessed. Over 70% of both care partners and recipients reported high levels of resilience. Lower resilience in both members of the dyad was associated with higher anxiety and lower quality of life. Additionally, lower resilience in care partners was associated with lower well-being, relationship satisfaction, and higher burden and stress. Resilience in persons with LBS and their care partners is important to consider when assessing mental health, relationship, and care burden outcomes, acting as a focus of intervention to support positive outcomes

Measuring bonding or attachment in the parent-infant-relationship: a systematic review of parent-report assessment measures, their psychometric properties and clinical utility

Background: Meaningful, valid and reliable self-report measures can facilitate the identification of important parent-infant-relationship factors, relevant intervention development and subsequent evaluation in community and clinical contexts. We aimed at identifying all available parent-report measures of the parent-infant-relationship or bond and to appraise their psychometric and clinimetric properties. Method: A systematic review (PROSPERO: CRD42017078512) was conducted using the, 2018 COSMIN criteria. Eight electronic databases were searched. Papers describing the development of self-report measures of the parent-infant-bond, attachment or relationship from pregnancy until two years postpartum or the assessment of their psychometric properties were included. Results: Sixty-five articles evaluating 17 original measures and 13 modified versions were identified and reviewed. The studies' methodological quality (risk of bias) varied between ‘very good’ and ‘inadequate’ depending on the measurement property assessed; however, scale development studies were mostly of ‘inadequate’ quality. Although most measures had good clinical utility, the psychometric evaluation of their properties was largely poor. The original or modified versions of the Postpartum Bonding Questionnaire collectively received the strongest psychometric evaluation ratings with high quality of evidence. Conclusions: This novel review revealed that only a few antenatal and postnatal measures demonstrated adequate psychometric properties. Further studies are needed to determine the most robust perinatal measures for researchers and clinicians

Multidimensional care burden in Parkinson’s-related dementia

This is the author accepted manuscript. The final version is available from SAGE Publications via the DOI in this record.Background and objective: Providing care to people with Parkinson’s-related dementia (PwPRD) may result in significant stress, strain and burden for life partners. A common measurement of life partner burden is the Zarit Burden Interview (ZBI), which considers ‘burden’ as a unitary concept; however, burden is highly complex and most likely comprises several dimensions. This study aimed to explore the factor structure of the ZBI in life partners of PwPRD and to examine the relationships among the emerging factors and the demographic and clinical features. Methods: Life partners of PwPRD participated in home-based quantitative assessments and self-completed postal questionnaires. The assessment battery included ZBI, measures of relationship satisfaction, mood, stress, resilience, health, quality of life, feelings related to care provision and socio-demographic questions. Data on PwPRDs’ motor and neuropsychiatric symptom severity were also elicited in home-based assessments. Results: An exploratory factor analysis (principal axis factoring) of ZBI, conducted with 127 life partners, revealed five burden dimensions: social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety, depression, resentment, negative strain and PwPRD motor severity. In multiple linear regression analyses, where each factor score was the dependent variable, stress, negative strain and resentment emerged as significant predictors of specific burden dimensions. Conclusions: Burden is a complex and multidimensional construct. Interventions should address specific types of burden amongst life partners of PwPRD to support couples’ relationships and maintain quality of life.This study was funded by the National Institute for Health Research, under the Research for Patient Benefit (RfPB) Programme (competition number 22; grant number PB-PG-0613-31058). The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health