Autism, dementia, and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia.

413 - Delivering tailored, holistic support to people living with dementia and their families: a new primary care intervention

ABSTRACTObjectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services.Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses.Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all.Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis.Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management.Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.

ObjectivesTo explore the impact of COVID-19 on postdiagnostic dementia care and support provision in England and Wales.DesignQualitative research using semistructured interviews, via video or telephone conferencing.SettingServices providing postdiagnostic support across...

Reimagining Postdiagnostic Care and Support in Young-Onset Dementia.

Receiving a diagnosis of autism in adulthood can be a life changing event, impacting identity, relationships, and mental health. A lack of post-diagnostic support has been highlighted by autistic adults, their allies, clinicians, and service providers. It can be a source of distress for autistic adults, reinforcing feelings of social isolation and rejection. Peer support could be a cost-effective, flexible, and sustainable model to provide community-based support for autistic adults. However, there is little research on the value of peer support, despite calls from the autistic community. This qualitative study explored autistic experiences and needs post-diagnosis, identifying specific ways that peer support may benefit them, and exploring the limitations of peer support. Twelve autistic adults who had all received an autism diagnosis in adulthood completed a semi-structured interview focussing on the diagnostic experience, post-diagnostic support needed and provided, engagement with the autistic community, and post-diagnostic peer support. Thematic analysis of interview transcripts resulted in four themes: (1) Mismatch in support needed and provided; (2) Community connection; (3) Flexible and personalised support; and (4) Sustainability. Participants indicated that peer support may be a useful mechanism to support autistic adults’ post-diagnosis and offers unique opportunities not available through other support channels. Though informal peer support exists, it could be more sustainable and effective if well-supported and funded.

More adults than ever before are seeking an autism diagnosis in adulthood. While receiving a diagnosis may be beneficial, many autistic people struggle to navigate their new diagnosis, and require support. This study conducted a systematic review of previous research on the support available after diagnosis (post-diagnostic support) for autistic adults without intellectual disability who were diagnosed in adulthood in the UK. A systematic review is a pre-planned method of searching for all relevant studies, before combining these to answer a larger question. The study aimed to investigate the availability of such support and its effectiveness, and to explore autistic adults' experiences of accessing support. We also used publicly available information to create a map of the post-diagnostic support services currently available across the UK. A systematic search of seven databases was conducted, to identify UK-based studies published after 2012. Nineteen studies were eligible to be included in the study. Although some form of post-diagnostic support is available across most areas in the UK, this mostly consists of providing information and 'signposting' the person to other services. These options may not meet the needs of autistic people, who want services such as psychoeducation (therapy whereby an individual receives education about their diagnosis to improve understanding and self-management), and peer support. Findings highlight the need for adequate support to alleviate the post-diagnostic challenges autistic adults face. The study could not evaluate the effectiveness of support options in the UK due to a lack of information about this in published research. Research shows that autistic adults would like low-level support services, psychoeducation, and peer support, and may also prefer autistic-led support. Further research is required to develop and evaluate post-diagnostic support programmes which include these elements.

BACKGROUND: Dementia in minority ethnic groups is on the rise. South Asian people represent 9.3% of the UK population and are the largest minority ethnic (ME) group. Most dementia care in South Asian communities is provided at home by family carers, yet there is low uptake of care planning and post-diagnostic support services. This review explored factors influencing care planning and post-diagnostic support for South Asian people with dementia. METHODS: Systematic review and thematic synthesis of qualitative studies exploring care planning and post-diagnostic support experiences and views of South Asian people with dementia, family carers, and health and social care professionals (HSCPs). There were no limits on country or date of publication. Six databases were searched (inception - June 2024) and two reviewers independently screened and quality-appraised studies. Reflexive thematic analysis was used to generate themes, which were then mapped to the Socioecological Model. The review protocol was registered on PROSPERO [Registration number: CRD42023404125]. RESULTS: From 3165 studies found, 2069 were screened (after de-duplication) and 24 studies were included for thematic synthesis. Key influential factors were mapped to one of four levels of a modified version of the Socio-ecological Model (SEM): (1) Individual and community level factors - cultural duty for home care, stigma and misinformation, support networks; (2) Interpersonal level factors - language barriers and person- and family-centred care; (3) Organisational and systems level factors - lack of integrated support, cultural competence, system pressures and institutional discrimination; (4) Structural level factors - socioeconomic and policy considerations. CONCLUSIONS: Recommendations to improve dementia care planning and post-diagnostic support for South Asian communities include (1) Reframing narratives around dementia and help-seeking through culturally-tailored community interventions; (2) Culturally competent, person- and family-centred care; (3) Holistic and integrated support beyond clinical care; (4) Equitable partnership working with South Asian communities to co-produce dementia services.

ABSTRACTObjectivesThe second International Summit on Intellectual Disability and Dementia, held in 2023, highlighted the unique challenges of diagnosing dementia in older autistic adults, particularly those with intellectual disabilities, due to the complex interplay of cognitive, communicative, and behavioral factors. This article addresses key diagnostic issues and post‐diagnostic considerations for this population.MethodA consensus report was developed by the Summit's Autism/Dementia Working Group through background reviews, expert discussions at the Summit, and iterative draft revisions, incorporating feedback from internal and external stakeholders. Key issues were extracted from the report and abridged for this manuscript.ResultsDiagnostic challenges stem from overlapping symptoms of co‐occurring neurodevelopmental and psychiatric conditions, rendering standard dementia tools insufficient. Comprehensive evaluations tailored to autism‐related traits, sensory sensitivities, and alternative communication methods are essential. Building diagnostic capacity among clinicians and fostering multidisciplinary collaboration are critical. Longitudinal assessments, initiated before dementia symptoms appear, facilitate early detection of subtle changes. Emerging biomarkers and neuroimaging techniques show promise and should be incorporated where feasible. Accommodations, such as virtual assessments in familiar settings, can enhance diagnostic accuracy by reducing anxiety. Creating transition processes from diagnostics to post‐diagnostic supports will aid in mitigating challenges and enhance life quality when dementia is a factor.ConclusionsResearch and clinician education are urgently needed to improve diagnostic approaches and streamline the transition from diagnosis to tailored post‐diagnostic support. An integrated framework of comprehensive efforts is vital for our better understanding of age‐associated neuropathological diagnostics and enabling long‐term well‐being of older autistic adults with dementia.

Autistic adults often experience difficulties with executive functions that affect independent living, education, and employment. The Weekly Calendar Planning Activity (WCPA) is a promising performance-based assessment of functional cognition, but research with autistic adults is limited. To examine patterns of functional cognition in autistic young adults using the WCPA. Cross-sectional between-groups and within-group design. Community. Autistic (n = 55) and neurotypical (n = 32) young adults (ages 18-30) without intellectual disability. We used the Weekly Calendar Planning Activity, adult Level 2, to examine the differences between autistic and neurotypical adults in (1) initial planning time for the activity, (2) rules followed, (3) appointment accuracy, (4) efficiency, (5) types of errors, and (6) strategies used. We also examined the correlation between strategies used and WCPA accuracy of autistic adults. Significant group differences were found in planning time, rules followed, appointment accuracy, efficiency, error types, and strategies used. Among autistic adults, the number of strategies used correlated significantly with WCPA accuracy (r = .42). Autistic adults experience difficulties in functional cognition, including managing multiple task components, resolving conflicts, managing distractions, and organizing information efficiently. The WCPA has promise as a tool to help guide intervention focused on building self-awareness and strategy use to improve daily functioning. Plain-Language Summary: Autistic young adults often experience difficulties with executive functioning that can make the transition to adult life challenging. Functional cognition, the ability to integrate cognitive skills to manage everyday activity, is essential for independent functioning. However, little is known about how autistic adults perform in real-world tasks that require executive functioning skills. This study used the Weekly Calendar Planning Activity to identify specific areas in which autistic adults may encounter difficulty, such as organizing tasks and managing distractions. These findings can help guide therapists in designing interventions that support autistic adults in developing strategies to improve their daily lives.

BackgroundPeople from minority ethnic groups are under-represented in dementia diagnosis, treatment, and care. The aim of this study was to examine barriers to accessing post-diagnostic care and support in minority ethnic communities from the perspective of primary care dementia coordinators in Denmark.MethodA survey questionnaire investigating issues related to provision of care and support services in minority ethnic communities was conducted among 41 primary care dementia coordinators representing all Danish geographic regions. Responses were primarily based on five-point Likert scales. Results from geographic regions with different rates of people from minority ethnic communities with dementia were compared.ResultsAmong the surveyed dementia coordinators, 95% generally thought that providing dementia care and support services to minority ethnic service users was challenging. Strategies for overcoming cultural and linguistic barriers were generally sparse. Uptake of most post-diagnostic services was perceived to be influenced by service users’ minority ethnic background. Communication difficulties, poor knowledge about dementia among minority ethnic service users, inadequate cultural sensitivity of care workers, and a lack of suitable dementia services for minority ethnic communities were highlighted as some of the main barriers. Not surprisingly, 97% generally found minority ethnic families to be more involved in provision of personal care and support compared to ethnic Danish families.ConclusionThere is a need to develop methods and models for post-diagnostic care and support that include cultural awareness and diversity for interacting with different cultural communities.

Attitudes to diagnosis and management in dementia care: views of future general practitioners.

BackgroundRecent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality.MethodsAn anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher’s exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate.ResultsThe final sample included n = 2649 participants (n = 1285 autistic) aged 16–96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods.LimitationsThe study’s sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality.ConclusionsAutistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.

Adaptive functioning describes the age-appropriate skills necessary for independent living. Research suggests that autistic children, adolescents, and adults who do not have an intellectual disability demonstrate adaptive functioning challenges relative to their intellectual ability. Thus, even though many of these individuals have the intellectual capacity to excel in mainstream educational and vocational settings, their adaptive functioning challenges may serve as an obstacle to independence. The research on adaptive functioning in autistic adults is focused on statistical analysis of standardized assessments (e.g. parent-report on multiple choice questionnaires). Qualitative research that examines the narratives of young adults and their parents is needed to better understand adaptive functioning in young adults and their resulting service needs. This study combined statistical analysis of standardized assessments with qualitative analysis of interview responses from autistic young adults without intellectual disability and their parents. Findings replicated previous reports of adaptive functioning challenges and identified influences on adaptive functioning development, consequences of independence, and service needs. Taken together, findings indicate the need for interventions and services that facilitate adaptive functioning development in autistic adolescents and young adults and provide insight into potential intervention targets and strategies.

Self-determination enhances a person’s quality of life and is a fundamental human right. According to self-determination theory, autonomy is one of three basic psychological needs that must be met to experience self-determination. The overarching aim of this exploratory study was to learn about autonomy from the perspective of autistic adults with intellectual disability, including what autonomy meant and how participants wanted to be supported to be autonomous. Participants (n = 8; median age = 24) engaged in a variety of participatory methods (e.g. discussions, arts and crafts, games) during weekly sessions. These sessions took place over 7–16 weeks and were each informed by a guiding question related to autonomy. Artifacts, video or audio recordings from each session, and reflexive journals were thematically analyzed. The results support an overarching meaning of autonomy as being able to be themselves. Participants identified (1) choice and control, (2) communicating their way, and (3) safe environments as important and showed us how they wanted to be supported in each of these three areas. We also identified having autistic facilitators as an overarching strategy. These results provide a foundation for implementing change to enhance autonomy for autistic adults with intellectual disabilities.Lay Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined “talk” as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous.