NATIONAL TASK GROUP ON INTELLECTUAL DISABILITIES AND DEMENTIA PRACTICES
Volume 2 Issue 3 NTG Caregiver News
NATIONAL TASK GROUP ON INTELLECTUAL DISABILITIES AND DEMENTIA PRACTICES
Volume 2 Issue 3 NTG Caregiver News
Journal of Gerontological Social Work (JGSW) 61(4) 411-431.
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.
Tel: +34 93 556 59 86; email: firstname.lastname@example.org
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)
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
(Glasgow, Scotland – October 13-14, 2016)
Abstract: The WHO has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down syndrome is a risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. The International Summit on Intellectual Disability and Dementia reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Persons with ID should be included in consultation processes and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care in older life.
American Journal of Alzheimer’s Disease & Other Dementias, 2017 June, Vol 32, No 4, pp. 230-237.
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. Like general applications, language related to dementia in ID field often lacked precision and could lead to a misunderstanding of the condition(s) under discussion. Most articles related to ID and dementia reporting clinical or medical research generally provided a definition of dementia or related terms; social care articles tended toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended (a) gaining 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) that in reports on neuropathologies or cognitive decline or impairment, definitions are used and data include 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.
Intellectual and Developmental Disabilities, in press.
Abstract: Adults with intellectual disability are affected by dementia at equivalent and elevated rates; many surviving into advanced age. End-of-life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. The International Summit on Intellectual Disability and Dementia’s report on end-of-life care in advanced dementia provides a synthesis statement which encompasses defining the state of advanced dementia, proposing use of palliative care services (including hospice), and recommending special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end-of-life care and supports, and involvement of adults with intellectual disability early on in their advance care planning.
Journal of Applied Research in Intellectual Disability, 2017, DOI: 10.1111/jar.12349
Abstract: As more people with intellectual disabilities live into old age, the prevalence of dementia in this group is increasing. The authors examine the challenges to dementia practice presented by intellectual disability. Expertise in the field of intellectual disability and advanced dementia is rare and our summit offered a series of recommendations including ongoing exchange of experiences and skills across professions, development of tools and scales that facilitate understanding of the progression of dementia, and more equitable access to palliative care and hospice services with increased and timely referral. We also recommended that intellectual disability services increased understanding of the fundamental dementia related needs which complicate end-of-life care.
The Journal of Dementia Care, July/August 2017, Vol 25, No 4, pp 28-31.
Abstract: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and by among different health and social care oriented organizations, but generally it is recognized that it encompasses a range of supports that are offered to adults once diagnosed with dementia and extending of the condition, until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with who have an intellectual disability with dementia. The Summit proposed a model that encompassed eleven focal areas: post-diagnostic counseling; understanding the needs related to the intellectual disability; specific interventions and treatments; psychological and medical surveillance; early identification of behavior and psychological symptoms; periodic reviews of the dementia care plan; care during advanced dementia; care at end of life; supports for carers and regular evaluation of quality of life linked with reviews of the person’s dementia care plan. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for interventions (whether pharmacological or non-pharmacological) for people with intellectual disability and dementia, there are viable resources and guidelines that 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. 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 and the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.
Aging & Mental Health, in press
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: (1) 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), (2) 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 (3) advocacy, public impact, family caregiver issues (nomenclature/ terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into 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.
The Gerontologist, in press
Several other papers are under consideration by various journals.
Abstract: The International Summit on Intellectual Disability and Dementia held in Scotland in 2016 covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This paper reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from Summit attendees, and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Omission of the perspectives of persons with intellectual disability in both policy and practice limits understanding of the experience of dementia. It leads to an overreliance on proxy reporting; something considered by the Summit to be a backwards step in person-centered work. The Summit recognized that the perspectives of persons with intellectual disability must be considered whenever interventions and supports are discussed with planning required at an earlier stage for advance directives that guide medical treatment, and for advice or counselling around relationships, the continuity of social networks, and when securing dementia-friendly housing. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish services and supports for dementia, and (c) peer support efforts that help adults with intellectual disability who are affected by dementia (either directly or indirectly). Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community dwelling arrangements, and (d) wider availability of materials for persons with intellectual disability that would promote understanding of dementia.
Journal of Intellectual Disabilities, in submission
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 caregiving among adults with intellectual disability (ID) affected by dementia. Seven opportunistic narratives offer context for relating a support-staging model to interpretations of various situations in which caregivers find themselves. The multi-dimensional model has two fundamental aspects: (1) identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and (2) defining how caregiving is influenced by the stage of dementia. We propose that 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 narratives illustrate both direct and indirect caregiving with a commonality the involvement of the caregivers and their attention to the care needs of an adult with ID. We conclude that the model has utility and shows the variability of caregiving, and that caregivers have various needs and tend to use whatever works and look to outside help only when they need it. Furthermore, a support-staging model can be useful in constructing research, defining family based support services, and setting public policy.
Journal of Gerontological Social Work, in submission
Abstract: An International Summit on Intellectual Disability and Dementia held in Glasgow, Scotland, 13-14 October 2016considered both the poor understanding of, and inadequate preparation to address the clinical complications inherent in end stage advanced dementia among people with an intellectual disability. A statement was produced offering guidance on clinical practices to support care optimal care for people with intellectual disability and advanced dementia. The Summit agreed that quality care requires (a) responding to the person’s communication style and needs;(b) alerting carers to signs and symptoms that signal transition into the terminal phase of dementia including the dying phase; (c) offering supportive care focused on comfort, pain and symptom management, the alleviation of emotional distress, with a focus on both quality of life and of dying; (d) genuine inclusion of those who matter to the person (e) care for carers including families, staff and peers; and (f) greater collaboration between intellectual disability services, hospitals, primary care and palliative and hospice care. The Summit agreed that consistent with the ‘Edinburgh Principles’(Wilkinson & Janicki, 2002), advanced dementia care for people with an intellectual disability is best delivered with attention to person-centeredness, relationship-based care and palliative principles.
Karen Dodd-a, Karen Watchman-b, Matthew P. Janicki-c, Antonia Coppus-d,e, Claudia Gaertner-f, Juan Forteag-h, Flavia H. Santos-i,j, Seth M. Keller-k and Andre Strydom-l
a-Department of Psychology, Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, UK;
b-University of Stirling, Scotland;
c-University of Illinois at Chicago, USA;
d Radboudumc, Nijmegen, The Netherlands;
e Dichterbij Centre of the Intellectual Disabled, Gennep, The Netherlands;
f Theodor Fliedner Foundation, Muelheim an Der Ruhr, Germany;
g Hospital De La Santa Creu i Sant Pau–Biomedical Research Institute Sant Pau, Barcelona, Spain;
h Down Medical Center, Fundaci_o Catalana S_ındrome de Down, Barcelona, Spain; iUniversity of Minho, Braga, Portugal;
j UNESP – S~ao Paulo State University, Bauru, Brazil;
k Advocare Neurology South Jersey, Lumberton, NJ USA;
l University College London, UK
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.
Download Post-Summit Consensus Statement
National Task Group on Intellectual Disabilities and Dementia Practices — Caregiving and Program Research on Caregiving of Persons with Intellectual Disability and Dementia
PRE-SUMMIT PAPER: Caregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities
This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association. The purpose was threefold: (1) to assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities; (2) to translate the contributions of these findings to the greater dementia care agenda; and (3) to promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform. The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD. Considered were five major areas related to care and caregiving: (1) family caregiving interventions; (2) supportive care settings; (3) effects of diversity; (4) screening and early detection; and (5) bridging service networks. Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations. [PDF Version]
The National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups.
Registration is open for the 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers.
Registration is free, but space is limited so please register as soon as possible if you want to attend in-person on the NIH campus. To register, click here. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.
The Summit is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups. It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public.
The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers.
We are very pleased to announce that Prof. Tamar Heller, the chair of the ad hoc working group on caregiving on dementia and intellectual disability (commissioned by the NTG) will be speaking at the Summit and conveying the recommendations made by the group on behalf of the NTG. The working group’s report will shortly be posted on the NTG website.
The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers. To view the draft agenda and list of speakers, click here.
If you are interested in attending, please register early and arrange for your lodging as soon as possible as this will be a very popular event. The location in Bethesda has limited hotel space near by, but the NIH campus is on the Metro’s Red Line (Medical Center station) — so access from anywhere in the metropolitan DC area is fairly easy.
If you do decide to attend, please let us know so we can keep in touch about any ancillary activities related to the NTG.
It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public. The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers. The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers.Please note: If you cannot attend the Summit in-person, the event will be live-streamed. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.