Future Care Planning Research Articles

2786 Defining advanced multimorbidity: a scoping review of research, policy and practice

Abstract Introduction As people are living for longer with multiple long-term health conditions (MLTCs), there are also more people dying with and from MLTCs. Dying with/from MLTCs can be unpredictable, lead to uncertainty for patients, caregivers and healthcare professionals, and hinder timely conversations around future care planning. There is no universally accepted definition informing the identification of individuals with MLTCs who may be approaching the end of life (advanced multimorbidity). This scoping review synthesised how advanced multimorbidity is defined in research, policy and practice. Methods Using the Arksey and O’Malley framework and relevant updates, scoping review methodology was used to search multiple databases and Grey Literature, summarised via the PRISMA-ScR. Two reviewers selected final study texts, which underwent content analysis. Stakeholder consultations with clinicians, academics and public participants ensured context and relevance of findings. Results From 10,316 unique publications, 38 final texts were included. Most (33/38) were published in the last decade. Many were quantitative (18/38) though a variety of other study types were included. Participants were mainly elderly—mean age 78.5 years. Only 4/38 studies integrated patient and public involvement. Forty-four different definitions of advanced multimorbidity were identified across the 38 studies, with only 2 definitions used across multiple studies. Definitions varied in the type and number of conditions included. Twenty-six definitions incorporated multiple variables to define advanced multimorbidity, while the remaining 18 used a single variable. Variables were conceptualised as discrete (functional assessments, age, healthcare utilisation etc) or holistic (self-assessment, clinician assessment, assessment tools). Stakeholders preferred definitions that were user-friendly and clinically driven. Conclusions The lack of consensus around an advanced multimorbidity definition creates unwarranted heterogeneity and barriers to advancing research in this field. This review highlights the need for a standardised approach that is context-appropriate and meaningful to practice and care, to facilitate proactive realistic conversations and decision-making.

Understanding dementia from the perspective of people with a learning disability: Preferences for the disclosure of dementia and care planning

Background:Whilst it is known that people with learning disabilities are at increased risk of developing dementia, there is a paucity of research which focuses on this from the perspective of individuals with learning disabilities.Literature review:A literature review was conducted to explore people with learning disabilities views about ageing, which revealed both positive and negative beliefs. However, a rapid review, focusing on dementia highlighted negative attitudes, stemming from its association with decline and loss of independence.Aim and method:The study aims were to explore people with learning disabilities’ understanding of dementia and their capacity to engage in discussions relating to dementia, the perceived dis/advantages of being told the diagnosis of dementia and their preferences for future dementia care planning. The study used a three-phase approach, conducted with 15 participants. This consisted of individual interviews, provision of psychoeducation on dementia and then the running of two focus groups. Data was analysed using reflexive thematic analysis.Results:From the individual interviews, three themes emerged, based on whether participants had prior knowledge of dementia or not. Those without knowledge were more negative about the ageing process. From the focus groups, four themes emerged which emphasised dementia as a time of loss, the impact on families and carers, for dementia care to be compassionate and provide support to others in the person’s support system.Conclusion and implications:The findings showed that people with learning disabilities were able to actively engage in discussing ageing and dementia, despite these being sensitive and abstract topics. This study is unique because it captures the perspectives of people with learning disabilities. The findings provide concrete suggestions for enhancing dementia care for this group. The provision of support for caregivers and the dissemination of accessible dementia information are two such examples.

Carers’ experiences of the transition of people with dementia into residential aged care: a narrative analysis

This study represents the experiences of informal carers of people with dementia concerning periods of transition into formal care. Retrospective interviews with 18 carers identified the key narratives: ‘This is why I had to’, ‘They said I need to’ and ‘It was a last resort’. These indicate a sense of carers’ responsibility in decision making and the undesirable assumptions around the move. However, the narrative of ‘I made the right decision’ was common after transition. Findings represent the nuanced carer experience around transitions, providing insight into the experiences of families living with dementia and informing future care planning.

What Do Patients With Cancer Know, or Want to Know, About Genomic Tumor Sequencing and Genetic Testing? A State-of-the-Art Review.

Molecular profiling (MP), which involves testing tissue, blood, or other body fluids to identify biomarkers, has become increasingly important in cancer treatment. Genomic tumor sequencing, a specific type of MP, is commonly used to identify specific gene variants or proteins that can be targeted for treatment. Germline testing is also routinely recommended for certain cancers. Low levels of genomic literacy among cancer patients, coupled with increasingly complex test results, challenge clinicians to communicate results and provide appropriate education. In addition, patients may have varying preferences for the level of information they desire and are able to process. This state-of-the-art review explores cancer patients' expectations, attitudes, knowledge, satisfaction, and concerns as they undergo molecular profiling. A search was conducted through four databases to identify studies from 2016 to 2022 to explore cancer patients' knowledge and preferences regarding genomic testing. Nineteen studies met the inclusion criteria. Most studies revealed that people with cancer have low levels of knowledge regarding MP, albeit with significant variability. Patients primarily desired MP to identify new treatment options and increase survival. While patients relied on their providers to interpret test results, they wanted to be informed of all results, mainly if those results might guide treatment decisions or future care planning. Most patients, especially those with low genomic/genetic knowledge, tended to overestimate the personal benefits of MP. Further study is needed to provide tailored education to fulfill patients' information needs.

Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study.

Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

2278 Adding value to the patient experience through a clinically optimised pathway approach

Abstract Introduction High numbers of clinically optimised patients in a DGH were having daily clinical input. RAAC clinical incident resulted in movement of clinically optimised patients from the district general hospital to a community hospital increasing the community bedbase from 32 to 72. This gave the opportunity to review how these patients were managed. Method In the first PDSA cycle, it was recognised that daily medical ward rounds for clinically optimised patients were neither necessary nor optimal and potentially perpetuated the impression that patients required in hospital care. These observations were sought using process mapping and fish bone diagram. In the second cycle, all clinically optimised were planned to be seen once a week on ward round. All patients were discussed on the daily multidisciplinary board round and if needed were changed on the board to not clinically optimised which prompted review. Nurses could also ask for review outside of the board round. Results During a four-week period one third, (24/72) of patients needed review outside of the weekly planned review. Of these 79.2% required only one review. Consequentially junior doctors reported to save an estimated cumulative of 16–48 hrs per week. Balancing measures of falls, mortality, pressure sores and complaints showed no change in the four months after implementation of the change. Patient, family and staff qualitative feedback was gathered. The next two cycles involved polypharmacy review and offered clinically optimised patients a ‘What Matters to Me’; meeting with their family utilising the time saved to improve communication, medication review and future care planning. Conclusion Data suggested no adverse impact of change in practice. Staff were redeployed to the front door frailty team rather than community hospital to improve access to Comprehensive Geriatric Assessment, and a new pathway was designed to create uniformity in flow for admissions to frailty.

#796 Obstetric nephrology in Europe: a survey of nephrologists’ self-reported experience and training

Abstract Background and Aims Chronic kidney disease (CKD) is estimated to affect 3% of pregnant women in high-income countries. The prevalence of CKD in pregnancy is predicted to rise due to advancing maternal age, obesity, and co-morbidities. There is a paucity of evidence regarding nephrologists’ experience in and exposure to women's health in Europe. North American literature reports two thirds of nephrologists self-reported a lack of confidence in women's health issues. This survey aimed to assess the confidence in and exposure to women's health among nephrologists in Europe. Method An anonymized online survey was conducted using the survey monkey platform from March to April 2023. A validated survey was utilised to ensure internal and external validity with minimal modifications made (Hendren, 2019). It was disseminated via email to Irish Nephrology Society membership, via link sharing on social media and messaging applications. Results were analysed using GraphPad prism. Results Demographics: A total of 75 participants responded, of those 52 identified as practising in Europe (22 Ireland and 30 other European countries). The results of respondents from Europe are detailed below. 63.46% (33) of respondents identified as female. 9.61% (5) were under 30 years of age, 42.3% (22) were aged from 30-40 years, 23.07% (12) were aged from 40-50 years, 23.07% (12) were aged from 50-60 years, and 1.92% (1) respondent over 60 years of age. Service provision: Women with kidney disease who are planning pregnancy are seen by the following Physicians: General or Transplant Nephrologist 63.46% (33), Nephrologist who specializes in pregnancy 42.31% (22), High Risk Obstetrician or Maternal Foetal Medicine Specialist 38.42% (20), Specialized interdisciplinary kidney disease in pregnancy clinic (Obstetrician and Nephrologist) 26.92% (14),Primary care doctor/family doctor 15.38% (8), Obstetrical Internal Medicine specialist 7.69% (4). Women with kidney disease who are pregnant are seen by the following Physicians: Nephrologist who specializes in pregnancy 40.38% (21), Specialized interdisciplinary kidney disease in pregnancy clinic (Obstetrician and Nephrologist) 34.62% (18),High Risk Obstetrician or Maternal Foetal Medicine Specialist 50% (26), General or Transplant Nephrologist 50% (26), Primary care doctor/family doctor 11.54% (6), Obstetrical Internal Medicine specialist 7.69% (4). 17.42% (9) of respondents had cared for &amp;lt;1 pregnant woman in the last year. Education: 73.07% (38) of respondents noted receiving dedicated education in women's health while in specialty training. Resources that were identified as potentially be helpful for counselling and management of women of childbearing age with CKD included: Interdisciplinary guidelines established by Obstetrics and Nephrology 80.77% (42), continuing education seminars or case based materials 78.85% (41), referral to a nephrologist with special interest and/or training in women's health 53.85% (28), patient education pamphlets or videos with shared decision making tools 44.23% (23), and access to e-consultation in 21.15% (11). Pregnancy counselling: 57.69% (30) of Nephrologists were confident/very confident in counselling on pregnancy outcomes by CKD stage. 48.08% (25) of Nephrologists were confident/very confident in counselling on foetal outcomes by CKD stage. 63.46% (33) of respondents offer pre-conception counselling to less than one women per month. Conclusion Nephrologists practising in Europe have varied exposure to and confidence in caring for women with kidney disease who are planning pregnancy or are pregnant. There is potential for improvement in training and expansion of combined obstetric and nephrology pre-conceptual counselling and pregnancy care. Further consultation with patient advocacy groups is required to plan future care delivery.

Shared decision making for patients with kidney failure to improve end-of-life care: Development of the DESIRE intervention.

To describe the development of a shared decision making intervention for planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services. End-of-life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End-of-life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end-of-life conversations. Health professionals report needing more skills to raise the issue of end-of-life care options within consultations and patients want to be able to discuss issues important to them about future care plans. The development design was guided by the UK Medical Research Council's framework and a user-centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end-of-life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. DESIRE is intended to support shared decision making about planning end-of-life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. What problem did the study address? International guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end-of-life care. What were the main findings? The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact? The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript.

Patient altruism at the end of life: A scoping review.

The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

Epilepsy and the risk of COVID-19-related hospitalization and death: A population study.

People with epilepsy (PWE) may be at an increased risk of severe COVID-19. It is important to characterize this risk to inform PWE and for future health and care planning. We assessed whether PWE were at higher risk of being hospitalized with, or dying from, COVID-19. We performed a retrospective cohort study using linked, population-scale, anonymized electronic health records from the SAIL (Secure Anonymised Information Linkage) databank. This includes hospital admission and demographic data for the complete Welsh population (3.1 million) and primary care records for 86% of the population. We identified 27 279 PWE living in Wales during the study period (March 1, 2020 to June 30, 2021). Controls were identified using exact 5:1 matching (sex, age, and socioeconomic status). We defined COVID-19 deaths as having International Classification of Diseases, 10th Revision (ICD-10) codes for COVID-19 on death certificates or occurring within 28 days of a positive SARS-CoV-2 polymerase chain reaction (PCR) test. COVID-19 hospitalizations were defined as having a COVID-19 ICD-10 code for the reason for admission or occurring within 28 days of a positive SARS-CoV-2 PCR test. We recorded COVID-19 vaccinations and comorbidities known to increase the risk of COVID-19 hospitalization and death. We used Cox proportional hazard models to calculate hazard ratios. There were 158 (.58%) COVID-19 deaths and 933 (3.4%) COVID-19 hospitalizations in PWE, and 370 (.27%) deaths and 1871 (1.4%) hospitalizations in controls. Hazard ratios for COVID-19 death and hospitalization in PWE compared to controls were 2.15 (95% confidence interval [CI] = 1.78-2.59) and 2.15 (95% CI = 1.94-2.37), respectively. Adjusted hazard ratios (adjusted for comorbidities) for death and hospitalization were 1.32 (95% CI = 1.08-1.62) and 1.60 (95% CI = 1.44-1.78). PWE are at increased risk of being hospitalized with, and dying from, COVID-19 when compared to age-, sex-, and deprivation-matched controls, even when adjusting for comorbidities. This may have implications for prioritizing future COVID-19 treatments and vaccinations for PWE.

Japan&apos;s healthcare delivery system: From its historical evolution to the challenges of a super-aged society

Although Japan's healthcare delivery system is highly regarded internationally, the COVID-19 pandemic has exposed its structural problems. Behind these issues lies a history of medical care provisions supported mainly by an unrestricted, "free labeling" system, and independently financed private hospitals. In addition, patients have a high degree of freedom of choice under the Japanese medical insurance system, making it difficult to provide comprehensive and continuous health management from initial diagnosis and treatment (primary care), specialized treatment, to supporting a return to home, providing nursing care and lifestyle support. As Japan becomes a "super-aged" society with individuals over 65 making up over 30% of the population, the nature of medical care will have to undergo major changes. Medical care's basic function must still be the treatment and cure of patients, but the system will also have to provide support. That means conceiving of care in a way that treats a person's life with dignity and does not sacrifice life for treatment. The implementation of a family doctor function and the clarification of the functions and roles of small and medium-sized community-based hospitals that support this function, as well as the establishment of a community comprehensive care network with multidisciplinary cooperation that goes beyond medical care, should also be set forth in future regional medical care plans.

The lived experiences of relatives of autistic adults, and their perceptions of their relationships with autistic adults across multiple age-related transitions and demands: A qualitative interview study with reflexive thematic analysis.

There is a need to better understand autism across the life course, including the lives of both autistic people and supporting relatives. As part of a larger mixed methods cohort study involving autistic adults, carers and relatives this sub-study focused on the experiences of relatives alone to learn more about the lives of people from the wider personal networks. Our research questions were: 1. What are the experiences of family members who care for and/or support autistic adults, 2. How can the viewpoints of relatives add to what we know about transitions and challenges experienced by autistic adults, and 3. What strategies/support have been helpful for adults and relatives? Relatives of autistic adults were purposively sampled and recruited using the Relatives/Carers cohort from the Adult Autism Spectrum Cohort-UK. 18 participants aged 31-81years who were related to 16 autistic adults aged 18-57years were interviewed for 24-91minutes. Interview transcripts were examined using reflexive thematic analysis. Two overarching themes were developed, 'Family support goes a long way in caring for autistic adults' and 'When families turn to society for support' with subthemes. Relatives described benefits they had gained and their admiration for autistic adults. They reflected on how they gave support for independence in various contexts of dependence. They also identified the challenges that both autistic adults and families face navigating support systems (for example for healthcare and employment). An important novel outcome was the advocated value of role-models with lived experience who come from outside of the family. The findings lead to recommendations for: (i) Strategies to reduce the barriers for support that are faced by autistic individuals and relatives during crisis points; (ii) recognition and support for what enables both relatives and autistic adults to function independently (e.g. funded activities, flexible employment); (iii) future planning conversations to include relatives who can enhance knowledge and help plan for future care or support needs for autistic adults and (iv) opportunities for role models (persons with lived experience, autistic adults and relatives) to inspire others and disseminate knowledge. These findings add valuable insights into the experiences of relatives of autistic adults and challenge the reader to have greater appreciation of the many roles relatives can contribute across time and in a variety of contexts. These perspectives add important information for those working with and planning provision for autistic adults.

Screening for End-of-Life in Acute Hospitals: A Cross-Sectional Survey.

Patients are frequently admitted to hospital in the last year of life. Actively recognising patients at this stage gives the opportunity to plan future care. We performed a cross-sectional survey of all acute medical and surgical inpatients at one tertiary hospital. Two simple screening tools, the indicators for a palliative approach and the surprise question identified a group of patients at greatly increased risk of dying over the next year. The one-year mortality of the study group was 27%, however was 52% and 65% for those identified at risk by the indicators for a palliative approach and surprise question tools. The surprise question had an area under the receiver operator curve value of .84. These screening tools could be used to help clinicians identify hospital inpatients that would benefit from advance care planning and a tailored approach to their care.

End-of-life conversations when transitioning to end-of-life care in residential care: A web-based questionnaire survey of registered nurses’ expressed experiences

Older individuals within residential care (RC) may have palliative care needs that intensify along the path of their illness to death. An end-of-life (EOL) conversation follows when transitioning from one care to another, to plan for future care, to consider the patient's wishes, and to avoid unnecessary suffering for both patient and family. The aim of this study was to describe registered nurses’ (RNs) experiences of EOL conversations when transitioning to EOL care in RC. The design of this study was a survey study with questionnaire data from RNs working in RC ( n = 71), analyzed with descriptive statistics and using qualitative content analysis. This study is reported in accordance with the COREQ checklist. Three main categories and seven subcategories were identified. The first category was ‘Deficiencies in EOL conversations’ with the subcategories ‘EOL conversations at too late a stage’ and ‘Physicians’ absence in collaboration concerning EOL conversations’. The second category was ‘Nurse’s role in EOL conversations’ with the subcategories ‘Initiate EOL conversations’, ‘Cohesive link between stakeholders concerning EOL conversations’, and ‘Carry out EOL conversations’. The third category was ‘Family involvement in end of life’ with the subcategories ‘Family members’ participation in EOL conversation’ and ‘Unrealistic expectations at EOL conversation’. RNs at RC take a great responsibility regarding EOL conversations by often both initiating and carrying out the conversations. Such conversations need to be initiated at an early stage to enable patients to receive information or express their own wishes, and to have time to create good relationships with family members so they feel informed and involved.

Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital

BackgroundA randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers’ perceptions of their own and their care-recipients’ needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge.MethodsThe CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient’s life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer’s perception of the care recipient’s future needs, carer’s current needs, and a proposed current and future care plan. The researcher’s philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants’ reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied.ResultsThirty carer participants were included. Analysis identified three major themes: Carers’ perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions.ConclusionThe CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer.Trial RegistrationAustralian Clinical Trials Registration: (ACTRN12619001187134).

‘Here, we describe them as forgetful, confused, and absent-minded’: dementia knowledge, stigma, and care plan among Vietnamese adults in rural area

Objectives This study aims to investigate dementia knowledge, dementia stigma, and self-rated importance of dementia plan, and their associated factors among Vietnamese adults in rural Vietnam. Methods A total of 325 participants completed the survey. The first section presented two vignettes and related open-ended questions. Participants described what terms local people in their community use, and what potential disease they thought the persons in the vignettes may have. Conventional content analysis was used to search for the key categories. The second section of the survey consisted of closed-ended questions from different measures. Two multivariate regression models were performed on dementia stigma and prioritizing dementia care plan. Results The study results show that participants held a moderate level of knowledge about dementia, yet they tended to use symptom- and stigma-connoted language to describe people with dementia. Their dementia stigma was reported at a middling level and was positively associated with age, number of older adults they have currently lived with, and anxiety about aging, and negatively associated with being married, knowing someone with dementia, and having greater Alzheimer’s disease knowledge. Most participants prioritized a future dementia care plan. The odds of this intention increased among those who have known someone with dementia, worried about getting dementia and caring for someone with dementia in the future, and had a higher level of Alzheimer’s disease knowledge. Conclusion The study results highlight the importance of dementia knowledge and exposure to people with dementia in reducing dementia stigma and increasing the chance for dementia care planning.

Development and External Validation of Models to Predict Need for Nursing Home Level of Care in Community-Dwelling Older Adults With Dementia

Most older adults living with dementia ultimately need nursing home level of care (NHLOC). To develop models to predict need for NHLOC among older adults with probable dementia using self-report and proxy reports to aid patients and family with planning and care management. This prognostic study included data from 1998 to 2016 from the Health and Retirement Study (development cohort) and from 2011 to 2019 from the National Health and Aging Trends Study (validation cohort). Participants were community-dwelling adults 65 years and older with probable dementia. Data analysis was conducted between January 2022 and October 2023. Candidate predictors included demographics, behavioral/health factors, functional measures, and chronic conditions. The primary outcome was need for NHLOC defined as (1) 3 or more activities of daily living (ADL) dependencies, (2) 2 or more ADL dependencies and presence of wandering/need for supervision, or (3) needing help with eating. A Weibull survival model incorporating interval censoring and competing risk of death was used. Imputation-stable variable selection was used to develop 2 models: one using proxy responses and another using self-responses. Model performance was assessed by discrimination (integrated area under the receiver operating characteristic curve [iAUC]) and calibration (calibration plots). Of 3327 participants with probable dementia in the Health and Retirement Study, the mean (SD) age was 82.4 (7.4) years and 2301 (survey-weighted 70%) were female. At the end of follow-up, 2107 participants (63.3%) were classified as needing NHLOC. Predictors for both final models included age, baseline ADL and instrumental ADL dependencies, and driving status. The proxy model added body mass index and falls history. The self-respondent model added female sex, incontinence, and date recall. Optimism-corrected iAUC after bootstrap internal validation was 0.72 (95% CI, 0.70-0.75) in the proxy model and 0.64 (95% CI, 0.62-0.66) in the self-respondent model. On external validation in the National Health and Aging Trends Study (n = 1712), iAUC in the proxy and self-respondent models was 0.66 (95% CI, 0.61-0.70) and 0.64 (95% CI, 0.62-0.67), respectively. There was excellent calibration across the range of predicted risk. This prognostic study showed that relatively simple models using self-report or proxy responses can predict need for NHLOC in community-dwelling older adults with probable dementia with moderate discrimination and excellent calibration. These estimates may help guide discussions with patients and families in future care planning.

The Early Detection of Neurodegenerative diseases initiative: emerging insights from the initial implementation of a digital toolkit

AbstractBackgroundThe benefits of the early detection of the neurodegenerative and vascular pathologies which cause dementia are widely acknowledged. These include the opportunity to initiate risk‐reduction strategies, disease‐modifying therapies, and future care planning. However, current pathological biomarkers have several important drawbacks, as they are typically invasive, expensive, impractical, insensitive, or lack real‐world validation. Conversely, the targeted utilization of non‐invasive and inexpensive digital technologies which can be integrated into everyday life raises the possibility of capturing a ‘digital‐fingerprint’ of early disease.MethodThe Early Detection of Neurodegenerative diseases (EDoN) initiative is a meta‐cohort study spearheaded by Alzheimer’s Research UK. EDoN is acquiring high‐dimensional data from a ‘digital toolkit’ comprising a smartwatch (Fitbit Charge 4/5), smartphone software (Mezurio and Longevity), and an electroencephalography headband (Dreem 3). In combination with conventional digital, cognitive and biological markers, these data will inform the development of powerful machine learning models to detect dementia‐causing diseases at the very earliest stages. The initial phase, incorporating four cohorts across three continents, is already underway, and will recruit nearly 900 participants. Cohorts are recruiting healthy individuals, as well as patients with subjective/mild cognitive impairment, or established dementia. Data from version‐1 of the toolkit is being collected over two‐week periods at 3‐monthly intervals for a minimum of 12 months.ResultWe will present early insights from the implementation of the EDoN digital toolkit version‐1. These will include sample characteristics, feasibility and acceptability, and participants’ compliance. PPI data confirmed good acceptability but the potential for inequity due to technical problems and poor digital literacy. Pilot data indicate that six‐month adherence to the EDoN digital tools varies between 82‐89%. The forthcoming AAIC presentation will include important recruitment, toolkit acceptability and analytic updates.ConclusionThe initial implementation of the EDoN digital toolkit suggests that it is feasible and acceptable to collect high‐dimensional digital data over a six‐month period. These ‘digital‐fingerprints’ will form the basis of the initial development of machine learning models to identify dementia‐causing pathologies substantially earlier. The insights gained will also inform the development of version‐2 of the EDoN digital toolkit which will be incorporated into the next meta‐cohort prospective study of around 4,000 participants.

P166: Elderly diabetic and non-diabetic patients in Portuguese RNCCI Convalescence Units: Are they different?

Objective:Diabetes Mellitus (DM) is one of the most prevalent chronic diseases, whose incidence has been increasing especially in the elderly, being estimated that over one-quarter of people over the age of 65 years have diabetes. Diabetes implications, whether due to acute or chronic complications, namely cognitive and functional impairments, can be devastating and usually determine the need for more supervision, implying a caregiver. For a better clinical characterization of DM, this study aimed to compare older adults, with and without DM, hospitalized in the Convalescence Units (CUs) of the Portuguese National Network of Integrated Continued Care (RNCCI).Methods:This cross-sectional study included older adults (≥65 years old) admitted into three CUs in northern Portugal. The inability to communicate was considered an exclusion criterion. A comprehensive assessment protocol was used, which comprised the Mini Mental State Examination (cognitive function), the Katz Index, and the Lawton Index (basic and instrumental activities of daily living). A comparative analysis between patients’ groups (with and without DM) was performed using the Mann-Whitney and Chi-Square tests.Results:The final sample included 202 older adults (99 diabetics and 101 non- diabetics), with a mean age of 77 (±7) years, mostly (69.8%) women. Comparing the patients with and without DM, the first group had more dyslipidemia (97% vs. 62.1%, p&lt;0.001) and osteoporosis (97% vs. 67%; p&lt;0.001), as well as more comorbidities (6 vs. 5; p&lt;0.001) and daily medication (9 vs. 7; p&lt;0.001). Moreover, DM patients had more cognitive impairment (52.5% vs. 34.0%; p=0.008) and greater dependence on instrumental activities of daily living (57.6% vs. 37.6%; p=0.009). A tendency was found regarding the presence of a caregiver for those with diabetes (75.8% vs. 63.1%; p=0.051).Conclusion:Patients with diabetes had more associated diseases and prescribed medicines, presented more cognitive impairment, greater dependence on instrumental activities of daily living, and were more likely to have a caregiver. This study will contribute to a better knowledge about the clinical and psychosocial characterization of older adults with DM in a specific context, allowing the development of future care plans and the adoption of better strategies for this group’s specificities.

The Effect of Multiple Sclerosis on Family Planning Among Saudi Families.

Background Multiple sclerosis (MS) is one of the most common neurological disorders in the world, and it is the leading cause of non-traumatic disability among young adults. While genetic susceptibility plays a role in MS development, the condition is not directly hereditary. Nevertheless, MS tends to aggregate within families, with first-degree relatives of affected individuals facing a higher risk than the general population. Additionally, family planning knowledge is insufficient among MS patients. Hence, this study aimed to assess the influence of MS disease on family planning and define the factors influencing decision-making regarding family planning in multiple sclerosis patients in the Eastern province of Saudi Arabia. Methodology A prospective study was conducted in Eastern Province, Saudi Arabia, during the period of 2022-2023 through directly interviewing the patients using a pre-validated questionnaire. This study would improve counseling and future care plans regarding family planning during patients' visits. Results A total of 57 women with MSwere enrolled in this study; 35 (61.4%) patients got pregnant after the onset of the disease, and 46 (97.9%) had healthy children. A total of 23 (40.4%) were previously aborted due to the disease. Only five (8.8%) diseased women experienced relapses of the disease during previous pregnancies. A total of 14 (24.6%) women reported that generally their condition improved during pregnancy and childbirth, and 12 (21.1%) had no change, while four (7%) reported that their condition generally deteriorated. Also, 15 (26.3%) had no change in their condition during the first three months after birth, while four (7%) experienced deteriorated condition. Exactly 71.2% reported that the disease mostly affected their planning for pregnancy, which was of greater extent among 24.6%and partial among 14%. Conclusion Multiple sclerosis affects women's decisions regarding family planning. The most reported causes among affected women included anxiety about weakness and lack of strength during childbirth, concern about possible side effects from MS drugs on the fetus (congenital malformations), worry about not being able to take care of a child due to illness and the severe impact of the disease on their health.