Autism, dementia, and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia / Matthew P. JANICKI in Autism, 30-6 (June 2026)  

Public ISBD [article]  inAutism > 30-6 (June 2026) . - p.1635-1653 Titre : Autism, dementia, and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia Type de document : texte imprimé Auteurs : Matthew P. JANICKI, Auteur ; Philip MCCALLION, Auteur ; Nancy JOKINEN, Auteur ; Frode Kibsgaard LARSEN, Auteur ; Dawna T. MUGHAL, Auteur ; Kathryn P. SERVICE, Auteur ; Tiziano GOMIERO, Auteur ; Christina N. MARSACK-TOPOLEWSKI, Auteur ; Karen WATCHMAN, Auteur ; Flavia H. SANTOS, Auteur ; Seth M. KELLER, Auteur ; Shahin SHOOSHTARI, Auteur ; Anupam THAKUR, Auteur ; Vikram PALANISAMY, Auteur Article en page(s) : p.1635-1653 Langues : Anglais (eng) Mots-clés : ASD  autism  dementia  environmental adaptations  long-term care  non-pharmacological interventions  post-diagnostic supports Index. décimale : PER Périodiques Résumé : Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults—many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues—and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population.Lay Abstract Autistic adults who develop dementia often experience challenges that are not well addressed by current dementia care systems. After a dementia diagnosis, people may need help with memory, communication, behavior changes, and daily living. For autistic adults, these supports must be adapted to their individual sensory sensitivities, communication styles, and social differences. This article reports on the work of an international group of researchers, clinicians, and advocates who met during the Second International Summit on Intellectual Disability and Dementia. The group examined how post-diagnostic support for autistic adults with dementia could be improved. They reviewed existing evidence, identified key barriers to care, and proposed strategies to strengthen services in areas such as medication use, environmental design, caregiver training, and personalized care planning. The report emphasizes that many autistic adults also have intellectual disabilities, mental health conditions, or long-term physical health issues, which can make care more complex. Current dementia care frameworks often overlook these overlapping needs, resulting in limited or unsuitable supports. The authors call for more research, workforce training, and autism-informed policy changes to ensure that post-diagnostic care is equitable, individualized, and responsive. Enhancing understanding and adapting support can help autistic adults with dementia maintain dignity, comfort, and quality of life. En ligne : https://dx.doi.org/10.1177/13623613261416670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=587 [article] Autism, dementia, and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia [texte imprimé] / Matthew P. JANICKI, Auteur ; Philip MCCALLION, Auteur ; Nancy JOKINEN, Auteur ; Frode Kibsgaard LARSEN, Auteur ; Dawna T. MUGHAL, Auteur ; Kathryn P. SERVICE, Auteur ; Tiziano GOMIERO, Auteur ; Christina N. MARSACK-TOPOLEWSKI, Auteur ; Karen WATCHMAN, Auteur ; Flavia H. SANTOS, Auteur ; Seth M. KELLER, Auteur ; Shahin SHOOSHTARI, Auteur ; Anupam THAKUR, Auteur ; Vikram PALANISAMY, Auteur . - p.1635-1653. Langues : Anglais (eng) in Autism > 30-6 (June 2026) . - p.1635-1653 Mots-clés : ASD  autism  dementia  environmental adaptations  long-term care  non-pharmacological interventions  post-diagnostic supports Index. décimale : PER Périodiques Résumé : Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults—many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues—and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population.Lay Abstract Autistic adults who develop dementia often experience challenges that are not well addressed by current dementia care systems. After a dementia diagnosis, people may need help with memory, communication, behavior changes, and daily living. For autistic adults, these supports must be adapted to their individual sensory sensitivities, communication styles, and social differences. This article reports on the work of an international group of researchers, clinicians, and advocates who met during the Second International Summit on Intellectual Disability and Dementia. The group examined how post-diagnostic support for autistic adults with dementia could be improved. They reviewed existing evidence, identified key barriers to care, and proposed strategies to strengthen services in areas such as medication use, environmental design, caregiver training, and personalized care planning. The report emphasizes that many autistic adults also have intellectual disabilities, mental health conditions, or long-term physical health issues, which can make care more complex. Current dementia care frameworks often overlook these overlapping needs, resulting in limited or unsuitable supports. The authors call for more research, workforce training, and autism-informed policy changes to ensure that post-diagnostic care is equitable, individualized, and responsive. Enhancing understanding and adapting support can help autistic adults with dementia maintain dignity, comfort, and quality of life. En ligne : https://dx.doi.org/10.1177/13623613261416670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=587

Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism / Christina N. MARSACK in Journal of Autism and Developmental Disorders, 47-8 (August 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-8 (August 2017) . - p.2378-2389 Titre : Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism Type de document : texte imprimé Auteurs : Christina N. MARSACK, Auteur ; Preethy S. SAMUEL, Auteur Article en page(s) : p.2378-2389 Langues : Anglais (eng) Mots-clés : Informal social support  Formal social support  Caregiver burden  Quality of life  Parents  Adults with autism spectrum disorders Index. décimale : PER Périodiques Résumé : The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents’ QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks. En ligne : https://doi.org/10.1007/s10803-017-3157-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=314 [article] Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism [texte imprimé] / Christina N. MARSACK, Auteur ; Preethy S. SAMUEL, Auteur . - p.2378-2389. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-8 (August 2017) . - p.2378-2389 Mots-clés : Informal social support  Formal social support  Caregiver burden  Quality of life  Parents  Adults with autism spectrum disorders Index. décimale : PER Périodiques Résumé : The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents’ QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks. En ligne : https://doi.org/10.1007/s10803-017-3157-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=314

Relationship Between Symptom Severity and Caregiver Burden Experienced by Parents of Adults With Autism / Christina N. MARSACK-TOPOLEWSKI in Focus on Autism and Other Developmental Disabilities, 36-1 (March 2021)  

Public ISBD [article]  inFocus on Autism and Other Developmental Disabilities > 36-1 (March 2021) . - p.57-65 Titre : Relationship Between Symptom Severity and Caregiver Burden Experienced by Parents of Adults With Autism Type de document : texte imprimé Auteurs : Christina N. MARSACK-TOPOLEWSKI, Auteur ; Alexandros MARAGAKIS, Auteur Article en page(s) : p.57-65 Langues : Anglais (eng) Mots-clés : caregiver burden  severity  aging caregivers  adults with autism spectrum disorder  activities of daily living Index. décimale : PER Périodiques Résumé : This study examined the relationship between the severity of autism spectrum disorder (ASD) and caregiver burden among parents of adult children with ASD. Using a mixed-methods study, 320 parents of adults with ASD participated in the web-based survey, with 51 parents participating in follow-up interviews. The quantitative analysis was used to determine whether caregiver burden could be predicted from the severity of ASD factors (communication, behavior, and socialization) and basic and instrumental activities of daily living (BADLs and IADLs). Results indicated that caregiver burden was predicted from BADLs, IADLs, and adult child behavior. Interview themes that emerged from qualitative analyses supported quantitative findings. Behavior was the strongest predictor of caregiver burden and discussed by parents during interviews. Professionals should develop behavioral support programs for adults with ASD to continue to reinforce positive behavior and support parents who are managing their adult child’s difficult behaviors. En ligne : http://dx.doi.org/10.1177/1088357620956927 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=441 [article] Relationship Between Symptom Severity and Caregiver Burden Experienced by Parents of Adults With Autism [texte imprimé] / Christina N. MARSACK-TOPOLEWSKI, Auteur ; Alexandros MARAGAKIS, Auteur . - p.57-65. Langues : Anglais (eng) in Focus on Autism and Other Developmental Disabilities > 36-1 (March 2021) . - p.57-65 Mots-clés : caregiver burden  severity  aging caregivers  adults with autism spectrum disorder  activities of daily living Index. décimale : PER Périodiques Résumé : This study examined the relationship between the severity of autism spectrum disorder (ASD) and caregiver burden among parents of adult children with ASD. Using a mixed-methods study, 320 parents of adults with ASD participated in the web-based survey, with 51 parents participating in follow-up interviews. The quantitative analysis was used to determine whether caregiver burden could be predicted from the severity of ASD factors (communication, behavior, and socialization) and basic and instrumental activities of daily living (BADLs and IADLs). Results indicated that caregiver burden was predicted from BADLs, IADLs, and adult child behavior. Interview themes that emerged from qualitative analyses supported quantitative findings. Behavior was the strongest predictor of caregiver burden and discussed by parents during interviews. Professionals should develop behavioral support programs for adults with ASD to continue to reinforce positive behavior and support parents who are managing their adult child’s difficult behaviors. En ligne : http://dx.doi.org/10.1177/1088357620956927 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=441

A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism / Christina N. MARSACK-TOPOLEWSKI in Journal of Autism and Developmental Disorders, 50-4 (April 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-4 (April 2020) . - p.1111-1122 Titre : A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism Type de document : texte imprimé Auteurs : Christina N. MARSACK-TOPOLEWSKI, Auteur Article en page(s) : p.1111-1122 Langues : Anglais (eng) Mots-clés : Adults with autism  Aging parental caregivers  Caregiver burden  Formal social support  Informal social support Index. décimale : PER Périodiques Résumé : This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services. En ligne : http://dx.doi.org/10.1007/s10803-019-04285-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=421 [article] A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism [texte imprimé] / Christina N. MARSACK-TOPOLEWSKI, Auteur . - p.1111-1122. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-4 (April 2020) . - p.1111-1122 Mots-clés : Adults with autism  Aging parental caregivers  Caregiver burden  Formal social support  Informal social support Index. décimale : PER Périodiques Résumé : This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services. En ligne : http://dx.doi.org/10.1007/s10803-019-04285-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=421

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