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

The long-term impact of loneliness and social isolation on depression and anxiety in memory clinic attendees and their care partners: A longitudinal actor–partner interdependence model

Introduction: This study examined the long‐term influence of loneliness and social isolation on mental health outcomes in memory assessment service (MAS) attendees and their care partners, with a focus on interdependence and bidirectionality. Methods: Longitudinal data from 95 clinic attendees with cognitive impairment, and their care partners (dyads), from four MAS in the North of England were analyzed. We applied the actor–partner interdependence model, seeking associations within the dyad. At baseline and 12‐month follow‐up, clinic attendees and care partners completed measures of loneliness and social isolation, depression, and anxiety. Results: Social isolation at baseline was more prevalent in care partners compared to MAS attendees. Social isolation in MAS attendees was associated with higher anxiety symptoms (β = 0.28, 95% confidence intervals [CIs] = 0.11 to 0.45) in themselves at 12 months. We found significant positive actor and partner effects of loneliness on depression (actor effect: β = 0.36, 95% CIs = 0.19 to 0.53; partner effect: β = 0.23, 95% CIs = 0.06 to 0.40) and anxiety (actor effect: β = 0.39, 95% CIs = 0.23 to 0.55; partner effect: β = 0.22, 95% CIs = 0.05 to 0.39) among MAS attendees 1 year later. Loneliness scores of the care partners have a significant and positive association with depressive (β = 0.36, 95% CIs = 0.19 to 0.53) and anxiety symptoms (β = 0.32, 95% CIs = 0.22 to 0.55) in themselves at 12 months. Discussion: Loneliness and social isolation in MAS clinic attendees had a downstream effect on their own and their care partners’ mental health. This highlights the importance of including care partners in assessments of mental health and social connectedness and expanding the remit of social prescribing in the MAS context

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

Homeopathy and Fever Management: Scoping Review Protocol

Scoping Review Protoco

“I don't know how, if, it's ever going to end”: narratives of caring for someone with an enduring eating disorder

Abstract Background Families and carers are pivotal in supporting loved ones experiencing eating disorders. This role can bring immense distress and burden, yet the experience of caring for someone with an enduring eating disorder has had minimal research focus. Thus, the purpose of this study is to give voice to carers empowering their stories to increase awareness and understanding, which could inform support to carers and consequently people with a lived and/or living experience of eating disorders. Methods Semi-structured interviews were conducted with 9 carers supporting individuals who had been experiencing an eating disorder for 7 or more years. Data were collected and analysed using narrative inquiry approach. Results Carers’ narratives revealed feelings of guilt and personal failure; a profound sense of disillusion with current treatment approaches; and immense grief and anguish. As they negotiated a tenuous relationship with hope and the uncertainty of their loved one’s future, carers spoke to a complex myriad of feelings of acceptance, letting go, and forging on. Conclusion Carers deserve to have their voices heard where they are too often silenced. Their narratives provide an urgent call for transformation in our treatments for eating disorders and further involvement of carers within the treatment journey, and their lived experience perspectives have great potential to guide this endeavour. Level of Evidence Level V, qualitative interviews