Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support*

Karen Dodd, Karen Watchman, Matthew P. Janicki, Antonia Coppus, Claudia Gaertner, Juan Fortea, Flavia H. Santosi, Seth M. Keller, and Andre Strydom

https://www.ncbi.nlm.nih.gov/pubmed/28880125

ABSTRACT

Objectives: 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.

CONTACT Karen Dodd DrKaren.Dodd@sabp.nhs.uk

* This consensus statement was developed as an output from the 2016 International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland, 13–14 October 2016, and hosted by the University of Stirling and University of the West of Scotland, funded by the RS MacDonald Trust, the Scottish Government, and Alzheimer Scotland. Collaborating sponsors included the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States and the University of Illinois at Chicago. The Summit was composed of individuals and representatives of many international and national organizations with a stake in issues related to adults with intellectual disability affected by dementia. The contents of this statement were partially developed under a grant from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT5020-03-00. However, those contents do not necessarily represent the policy of the US Department of Health and Human Services, nor the endorsement by the US Federal Government. The opinions expressed represent those of the Summit participants and of the NTG.

Main conclusions agreed during the Summit on Intellectual Disability and Dementia

PRINCIPALES CONCLUSIONES ACORDADAS DURANTE LA CUMBRE SOBRE DISCAPACIDAD INTELECTUAL YDEMENCIA

ISSN: 0210-1696

DOI: http:/ /dx.doi.org/10.14201/scero2018492115122

Matthew P. JANICKI University of Illinois at Chicago, USA

Karen WATCHMAN University of Stirling, Scotland, UK

Juan FORTEA ORMAECHEA Centro Medico de Down de la Fundaci Catalana de Sindrome de Down (FCSD) y Servicio de Neurologia def Hospital de la Santa Creu i Sant Pau jfortea@santpau.cat

Y miembros de! International Summit on Intellectual Disability and Dementia

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, https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers. 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.

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.

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

http://www.who.int/mental_health/neurology/dementia/action_plan_consultation/en/

† 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: jfortea@santpau.cat

 

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)

National task group early detection screen for dementia

Esralew, L., Janicki, M.P.., & Keller, S M. (2017).  National task group early detection screen for dementia (NTG-EDSD) [Chapter 11].  In V.P. Prasher (Ed.), Neurological assessments of dementia in Down syndrome and intelectual disabilities (pp. 197-213, Appendix I).  Basel, Switzerland: Springer. DOI 10.1007/978-3-319-61720-6_11

The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia

Karen Watchman, PhD and Matthew P Janicki, PhD (Members of the International Summit on Intellectual Disability and Dementia)

The Gerontologist, gnx160, https://doi.org/10.1093/geront/gnx160
Published:
02 November 2017

Abstract

An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13–14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports(advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacypublic impactfamily caregiver issues(nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature

Article Citation: Matthew P. Janicki, Philip McCallion, Michael Splaine, Flavvia H. Santos, Seth M. Keller, and Karen Watchman (2017) Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature. Intellectual and Developmental Disabilities: October 2017, Vol. 55, No. 5, pp. 338-346. https://doi.org/10.1352/1934-9556-55.5.338

Source: Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature | Intellectual and Developmental Disabilities

ABSTRACT
A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion, an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group’s report); (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced; and (c) using definitions and data, such as subjects’ ages, sex, level of ID, residential situation, basis for dementia diagnosis, presence of Down syndrome (or other risk conditions), years from diagnosis, and if available, scores on objective measures of changing function, in reports on neuropathologies or cognitive decline or impairment.