Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia

M. McCarron,1 P. McCallion,2 A. Coppus,3 J. Fortea,4 S. Stemp,5 M. Janicki6 & K. Watchman7

1School of Nursing and Midwifery Studies, Trinity College Dublin, Dublin, Ireland

2 College of Public Health, Temple University, Philadelphia, PA, USA

3 University Medical Center, Radboud Universiteit, Nijmegen, Gelderland, The Netherlands

4 Fundacio Catalana per a la Recerca i la Innovacio, Barcelona, Catalunya, Spain

5 Reena, Toronto, Canada

6 Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL, USA

7 Faculty of Health Sciences and Sport, Stirling, Scotland

Abstract Background The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. Method The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Results The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals preexisting level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person’s prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co-morbidity, including particular attention to late-onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co-morbidities, immobility and neuropathological deterioration. Conclusions The Summit recommended an investment in research to more clearly identify measures of person-specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment

2017 National Research Summit on Dementia Care, Services and Supports for Persons with Dementia and their Caregivers: Final Report

The final report from the 2017 National Research Summit on Dementia Care, Services and Supports for Persons with Dementia and their Caregivers has been released.

Download Summit Final Recommendations 5-17-18 and the Summit Final Report 5-17-18. The RRTCDD and the National Task Group on Intellectual Disabilities and Dementia Practice developed one of the pre-summit reports and presented and participated in this meeting.

The goals of the Summit were to identify what we know and what we need to know in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive, effective, dementia care, services, and supports to improve quality of care, quality of life, and the lived experience of dementia for people with the condition and their caregivers. One of the main objectives in planning the summit was to involve a wide array of stakeholders to build understanding about the many different dementia-related issues and topics that interest and concern them. Five hundred people attended the summit in person, and another 1,000 watched the videocast. The Summit received almost 700 research recommendations from many sources, including summit speakers, stakeholder groups that met before the summit, individuals who attended pre-summit meetings, individuals who attended the summit, and others who submitted recommendations to the Summit public website. Following the summit, the research recommendations were distilled into 12 broad themes. The final report includes 58 research recommendations that address topics ranging from clinical care and support for family caregivers, to engagement of persons with dementia and caregivers in the research process, and approaches for disseminating effective programs and services so they are available for persons with dementia and their families in communities across the country.

Some funding for research to address summit recommendations has already been announced, in particular by the National Institute on Aging. NIA has also decided to add the National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers to the regular 3-year rotation of the 2 other dementia-related national summits, the National Research Summits on Alzheimer’s Disease (NIA) and Alzheimer’s Disease Related Dementias (NINDS).

The following is the summit website, The website includes all the power points, pre-summit and stakeholder group reports, recommendations from all sources, and a link to the videocasts for the two days of the summit.

Health conditions, functional status and health care utilization in adults with cerebral palsy

Family Practice, 2018, 1–10

Robert J Fortuna1,*, Ashley Holub2, Margaret A Turk3, Jon Meccarello4 and Philip W Davidson4

1 Departments of Internal Medicine and Pediatrics and
2 Department of Public Health Sciences, University of Rochester, Rochester, NY, USA,
3 Department of Pediatrics and Physical Medicine and Rehabilitation, State University of New York Upstate Medical University, Syracuse, NY, USA and
4 Department of Pediatrics, Neurodevelopmental and Behavioral Pediatrics, University of Rochester, Rochester, NY, USA

*Correspondence to Robert J. Fortuna, Departments of Internal Medicine and Pediatrics, School of Medicine and Dentistry, University of Rochester, Rochester, NY, USA; E-mail:


Aim. Health conditions in children with cerebral palsy (CP) are well described, yet health is less defined with advancing age. We examined health conditions, functional status and health care utilization in adults with CP across age groups.

Methods. We collected cross-sectional data on health conditions, functional status and utilization from the medical records of adults with CP across a large university-affiliated primary care network using the Rochester Health Status Survey IV (RHSS-IV), a 58-item validated survey. Data from the National Health and Nutrition Examination Survey and National Health Interview Survey provided prevalence estimates for the general population as comparison.

Results. Compared to the general population, adults with CP had higher rates of seizure disorder, obesity and asthma across all ages. Adults with CP under 30 years of age had higher rates of hypertension (16.7 versus 5.6%; P = 0.04), urinary incontinence (41.7 versus 10.5%; P < 0.001) and depression (16.7 versus 6.9%; P = 0.07). Conversely, there were lower rates of alcohol misuse, tobacco/nicotine and sexually transmitted illnesses. Independence with all activities of daily living decreased from 37.5% at 18–29 years of age to 22.5% in those 60 and over. Seizure disorders, urinary incontinence and gastroesophageal reflux disease were all independently associated with lower functional status. As expected, health care utilization increased with advancing age.

Conclusions: Adults with CP should be monitored for conditions occurring at higher prevalence in CP, as well as common conditions occurring with advancing age. Age-related functional decline should be anticipated, especially with coexisting seizure disorders and urinary incontinence.

Health services use and costs for Americans with intellectual and developmental disabilities: A national analysis

Fujiura, G. T.,Li, H., & Magana, S. (2018) Health services use and costs for Americans with intellectual and developmental disabilities: A national analysis. Intellectual and Developmental Disabilities. 56, (2) p. 101–118. DOI: 10.1352/1934-9556-56.2.101


Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service. Prescription medication costs were the primary driver of total health care expenditures for Americans with IDD. The presence of secondary chronic health conditions and poor mental health status were the consistent predictors of high expense users across types of health care. Study results are discussed in terms of implications for more nuanced evaluations of health care costs and need for recurring surveillance of health care for Americans with IDD in the years following passage of the Patient Protection and Affordable Care Act.

Impact of Medicaid Managed Care on Illinois’s acute health services expenditures for adults with intellectual and developmental disabilities

Yamaki, K., Wing, C., Mitchell, D., Owen, R. & Heller, T. (2018) Impact of Medicaid Managed Care on Illinois’s acute health services expenditures for adults with intellectual and developmental disabilities, Intellectual and Developmental Disabilities, 56 (2), p. 133–146. DOI: 10.1352/1934-9556-56.2.133


States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS)to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on costs by tracking Illinois’s Medicaid acute health services expenditures for adults with intellectual and developmental disabilities (IDD) living in the community (n ¼ 1,216) before and after their transition to MMC. Results of the difference-in-differences (DID) regression analysis using an inverse propensity score weight (IPW) matched comparison group (n¼1,134) design suggest that there were no significant state Medicaid cost savings in transitioning people with IDD from FFS to MMC.

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

Journal of Gerontological Social Work (JGSW) 61(4) 411-431.

Nancy Jokinen is the senior author. A number of Summit members, representing various nationalities, participated in the writing of this article [Nancy Jokinen, Tiziano Gomiero, Karen Watchman, Matthew P. Janicki, Mary Hogan, Frode Larsen, Anna Beránková, Flávia Heloísa Santos, Kathy Service, & Jim Crowe]
Abstract: This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multi-dimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the ‘diagnostic phase’, (2) the ‘explorative phase’, (3) the ‘adaptive phase’, and (4) the ‘closure phase’. The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with intellectual disability and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

Health care expenditures of overweight and obese U.S. adults with intellectual and developmental disabilities

Henan Lia,a, Glenn Fujiura,b, Sandra Magaña,c, Susan Parish,d

a Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, USA

b Department of Disability and Human Development, The University of Illinois at Chicago, USA

c Steve Hicks School of Social Work, University of Texas at Austin, USA

d Bouvé College of Health Sciences, Northeastern University, USA


Background: U.S. adults with intellectual and developmental disabilities (IDD) have poorer health status and greater risks for being overweight and obese, which are major drivers of health care expenditures in the general population. Health care expenditures and IDD have not been studied using nationally representative samples, and the impact of overweight and obesity have not been examined. Aim: Using nationally representative data, we aimed to compare the health care expenditures of not-overweight, overweight and obese U.S. adults with IDD, and calculate model-adjusted expenditures. Methods and procedures: Pooled data from the 2002–2011 Medical Expenditure Panel Survey linked to National Health Interview Survey (n=1224) were analyzed. Two-part model regressions were conducted, with covariates being year of survey, age, sex, race/ethnicity, household income status, geographical region, urban/rural, marital status, insurance coverage, perceived health status, and perceived mental health status. Outcomes and results: Overall, obese adults with intellectual and developmental disabilities had higher expenditures than their non-obese peers. Being obese was associated with an estimated additional $2516 in mean expenditures and $1200 in median expenditures compared with the reference group, who were neither overweight nor obese. Conclusions and implications: Obesity is an important predictor of higher health care costs among community-living adults with IDD Finding effective strategies and interventions to address obesity in this population has great financial and policy significance.

Reported gum disease as a cardiovascular risk factor in adults with intellectual disabilities

Hsieh, K., Murthy, S., Heller, T., Rimmer, J., Yen, G. (2017). Reported gum disease as a cardiovascular risk factor in adults with intellectual disabilities. Journal of Intellectual Disability Research, DOI: 10.1111/jir.12438



Several risk factors for cardiovascular disease (CVD) have been identified among adults with intellectual disabilities (ID). Periodontitis has been reported to increase the risk of developing a CVD in the general population. Given that individuals with ID have been reported to have a higher prevalence of poor oral health than the general population, the purpose of this study was to determine whether adults with ID with informant reported gum disease present greater reported CVD than those who do not have reported gum disease and whether gum disease can be considered a risk factor for CVD.


Using baseline data from the Longitudinal Health and Intellectual Disability Study from which informant survey data were collected, 128 participants with reported gum disease and 1252 subjects without reported gum disease were identified. A series of univariate logistic regressions was conducted to identify potential confounding factors for a multiple logistic regression.


The series of univariate logistic regressions identified age, Down syndrome, hypercholesterolemia, hypertension, reported gum disease, daily consumption of fruits and vegetables and the addition of table salt as significant risk factors for reported CVD. When the significant factors from the univariate logistic regression were included in the multiple logistic analysis, reported gum disease remained as an independent risk factor for reported CVD after adjusting for the remaining risk factors. Compared with the adults with ID without reported gum disease, adults in the gum disease group demonstrated a significantly higher prevalence of reported CVD (19.5% vs. 9.7%; P = .001).


After controlling for other risk factors, reported gum disease among adults with ID may be associated with a higher risk of CVD. However, further research that also includes clinical indices of periodontal disease and CVD for this population is needed to determine if there is a causal relationship between gum disease and CVD.

Low Levels of Physical Activity and Sedentary Behavior in Adults with Intellectual Disabilities

Int. J. Environ. Res. Public Health 2017, 14(12), 1503; doi:10.3390/ijerph14121503

Kelly Hsieh 1,* , Thessa I. M. Hilgenkamp 2, Sumithra Murthy 1, Tamar Heller 1 and James H. Rimmer 3
1 Department of Disability and Human Development, University of Illinois at Chicago, Chicago, IL 60609, USA
2 Department of Kinesiology and Nutrition, University of Illinois at Chicago, Chicago, IL 60612, USA
3 School of Health Professions, University of Alabama at Birmingham, SHPB 331, Birmingham, AL 35294, USA

The paper has been published online:

Adults with intellectual disabilities (ID) are more likely to lead sedentary lifestyles and have low levels of physical activity (LLPA). The present study investigated the prevalence of reported LLPA and time spent watching TV in adults with ID and identified the associated factors for these behaviors. The proxy informants of 1618 adults with ID completed the surveys regarding their health behaviors. Multiple logistic regressions were employed for LLPA and multiple linear regressions for time spent watching TV. About 60% of adults with ID had LLPA and average time spent watching TV was 3.4 h a day. Some characteristics and health and function variables were identified as associated factors. While engaging in community activities and involvement in Special Olympics were inversely associated with LLPA, they were not associated with time spent watching TV. Attending day/educational programs or being employed were associated with spending less time watching TV. Findings highlight differential factors associated with LLPA versus TV-watching behavior in adults with ID. Hence, a key strategy aimed at increasing physical activity includes promoting participation in social and community activities, while targeted activities for reducing sedentary behavior might focus on providing day programs or employment opportunities for adults with ID.

Principales conclusiones acordadas durante la Cumbre sobre discapacidad intelectual y demencia

Matthew P. Janicki†, Karen Watchman*, Juan Fortea Ormaechea# and the members of the International Summit on Intellectual Disability and Dementia

† University of Illinois at Chicago, USA

* University of Stirling, Scotland, UK

# Fundació Catalana de Síndrome de Down (FCSD), Barcelona, España y Unidad de Memoria, Departamento de Neurología,

Hospital de la Santa Creu i Sant Pau, Instituto de Investigación Biomédica Sant Pau, Universitat Autònoma de Barcelona, Barcelona, España

Address for corresponding author:

Juan Fortea Ormaechea

Director Unidad Alzheimer Down

Centro Médico de Down de la Fundació Catalana de Síndrome de Down (FCSD) y Servicio de Neurología del Hospital de la Santa Creu i Sant Pau.

Barcelona, Spain.

Tel: +34 93 556 59 86; email:


1 Este breve informe resume las recomendaciones de la Cumbre Internacional sobre Discapacidad Intelectual y Demencia, celebrada en Glasgow, Escocia, del 13 al 14 de octubre de 2016, organizada por la Universidad de Stirling y la Universidad del Oeste de Escocia, financiada por el RS MacDonald Trust , el gobierno escocés y Alzheimer Scotland. Los patrocinadores colaboradores incluyeron el Grupo de Trabajo Nacional sobre Discapacidades Intelectuales y Prácticas de Demencia (NTG) en los Estados Unidos y la Universidad de Illinois en Chicago. La cumbre fue copresidida por Karen Watchman, Ph.D., y Matthew P. Janicki, Ph.D., y tuvo representantes multidisciplinares de distintas organizaciones nacionales e internacionales con intereses en cuestiones relacionadas con los adultos con discapacidad intelectual afectados por demencia. El contenido de esta declaración fue parcialmente desarrollado gracias a una subvención del Departamento de Salud y Servicios Humanos de los Estados Unidos, Administración para la Vida Comunitaria (ACL), Beca del Instituto Nacional de Discapacidad, Vida Independiente e Investigación en Rehabilitación (NIDILRR) # 90RT5020-03- 00. Sin embargo, esos contenidos no representan necesariamente la política del Departamento de Salud y Servicios Humanos de EE. UU., ni el respaldo del Gobierno Federal de EE. UU. Las opiniones expresadas representan las de los participantes de la Cumbre y del NTG. 2 Miembros de la Cumbre Internacional: Cathy Asante (Escocia), Anna Beránková (República Checa), Kathleen Bishop (EE. UU.), Nicole Cadovius (EE. UU.), Sally-Ann Cooper (Escocia), Tonni Coppus (Países Bajos), Jim Crowe (Gales ), Karen Dodd (Reino Unido), Juan Fortea (España), Claudia Gaertner (Alemania), Kiran Haksar (Escocia), Flavia Heloisa Santos (Brasil), Mary Hogan (EE. UU.), Matthew P. Janicki (EE.

UU.), Nancy Jokinen (Canadá), Seth Keller (EE. UU.), Frode Larsen (Noruega), Ronald Lucchino (EE. UU.), Philip McCallion (EE. UU.), Mary McCarron (Irlanda), Peter Mittler (RU), Jim Pearson (RU), Sam Quinn (Escocia) , Anne-Sophie Rebillat (Francia), Evelyn Reilly (Irlanda), Kathy Service (EE. UU.), Michael Splaine (EE. UU.), Sandy Stemp (Canadá), Andre Strydom (Reino Unido), Gomiero Tiziano (Italia), Leslie Udell (Canadá) , Karen Watchman (Escocia)

1 2 3 36