Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia

Philip McCallion1 | Mary Hogan2 | Flavia H Santos3 | Mary McCarron4 | Kathryn Service5 | Sandy Stemp6 | Seth Keller7 | Juan Fortea8 | Kathleen Bishop9 | Karen Watchman10 | Matthew P Janicki11 | and the Working Group of the International Summit on Intellectual Disability and Dementia

End-of-life (McCallion et al 2017) J Appl Res Intellect Disabil. 2017;1–5.

ABSTRACT

Background: 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. Methods: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. Results: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further 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. Conclusions: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

  1. University at Albany, Albany, NY, USA
  2. National Task Group on Intellectual Disabilities and Dememtia Practices, Eliot, ME, USA
  3. University of Minho, Braga, Portugal
  4. Trinity College Dublin, Dublin, Ireland
  5. Nurse Practitioner Consultant, Northampton, MA, USA
  6. Reena Foundation, Toronto, ON, Canada
  7. American Academy of Developmental Medicine and Dentistry, Lumberton, NJ, USA
  8. Catalan Foundation for Down Syndrome, Barcelona, Spain
  9. Geriatrics Consultant, Lee Center, NY, USA
  10. University of Stirling, Stirling, Scotland
  11. University of Illinois at Chicago, Chicago, IL, USA

Correspondence Philip McCallion, Center for Excellence in Aging Services, University at Albany, Albany, NY, USA. Email: pmccallion@albany.edu

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD, Matthew P. Janicki, PhD, Michael Splaine, MA, Frode K. Larsen, MPH, Tiziano Gomiero, PhD, and Ronald Lucchino, PhD

Source: ID in National Plans

Abstract

The World Health Organization (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’s syndrome is a significant 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. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, 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 for dementia.

Rights in mind: Thinking differently about dementia and disability

Tom Shakespeare -University of East Anglia, UK, Hannah Zeilig – University of the Arts London, UK, & Peter Mittler – University of Manchester, UK

Download Rights in Mind (2017)

Abstract

The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities.

NTG Caregivers Newsletter on ID and Dementia Practices (Volume 1, Issue 1)

Welcome to the first issue of the NTG Caregiver News (Volume 1 Issue 1) March 2017. This publication has grown out of the NTG’s Family Caregiver Online Support Group for those who are caring for, or have cared for, loved ones with Alzheimer’s and intellectual disabilities.

Once each month, we open the airwaves to share what is happening in our lives and with our loved ones. To keep the group effective for support to the families, we limit participation to those who have loved ones with dementia or are direct caregivers. As we identify topics we would like more information about, we invite specific professionals to lead our conversation. Upcoming issues of this newsletter will include some of the highlights of those conversations. In addition, watch for links to helpful resources.

This issue includes some general information on intellectual and developmental disabilities and dementias, as well as an introduction to the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices. We encourage you to visit the NTG website for more information on their activities and to become a member.

We have learned through interactions with families in the online support group that there are lots of questions, many uncertainties, multiple feelings of loss, limited resources in local communities, and great recognition that love is most important for all of us.

Please do circulate NTG Caregiver News (Volume 1 Issue 1) March 2017 among your colleagues and to any family caregiver groups with which you have contact.

Nurses’ experience of caring for people with intellectual disability and dementia

Josephine Cleary and Owen Doody

Aims and objectives. To explore nurses’ experiences of caring for older people with intellectual disability and dementia.

Background. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual.

Design. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses’ experience of working with older people with intellectual disability and dementia.

Methods. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi’s framework for data analysis.

Results. Three key themes were identified: ‘knowledge of dementia’, ‘personcentred care’ and ‘transitioning within the service’. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff.

Conclusions. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. Relevance to clinical practice. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach.

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD1, Matthew P. Janicki, PhD2, Michael Splaine, MA3, Frode K. Larsen4, Tiziano Gomiero, PhD5 and Ronald Lucchino, PhD6

1 University of Stirling, Scotland, UK
2 University of Illinois at Chicago, USA
3 Splaine Consulting, Columbia, Maryland USA
4 Norwegian National Advisory Unit on Ageing and Health, Oslo, Norway
5 ANFFAS Trentino Onlus, Trento, Italy
6 Utica College, Sarasota, Florida USA

 

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 significant 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. An International Summit on Intellectual Disability and Dementia in Scotland reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that their carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes and greater advocacy is required from national organisations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia

McCallion, P.1, Hogan, M.2, Santos, F H.3, McCarron, M.4, Service, K.5, Stemp, S.6, Keller, S.7, Fortea, J.8, Bishop, K.9, Watchman, K.,10 Janicki, M.P.11 and the Working Group of the International Summit on Intellectual Disability and Dementia

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.

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 Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD), 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.

Authors:
1University at Albany, New York USA
2Family Advocate, Eliot, Maine USA
3 University of Minho, Braga, Portugal
4 Trinity College Dublin, Dublin, Ireland
5 Nurse Practitioner Consultant, Northampton, Massachusetts USA
6Reena Foundation, Toronto, Ontario Canada
7 American Academy of Developmental Medicine and Dentistry, Lumberton, New Jersey USA
8 Catalan Foundation for Down Syndrome, Barcelona, Spain
9Geriatrics Consultant, Lee Center, New York USA
10University of Stirling, Scotland
11University of Illinois at Chicago, Illinois USA

Address for Corresponding Author:
Philip McCallion, Ph.D.
Center for Excellence in Aging Services
RI 383
University at Albany
Albany NY 12222 USA
Email: pmccallion@albany.edu
Telephone: +1 518 442-5347

Accepted for publication in the Journal of Applied Research in Intellectual Disability (1/31/17)

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

Janicki, M.P.1, McCallion. P.2, Splaine, M.3, Santos, F.H.4, Keller, S.M.5, Watchman, K.6. (October 2017). Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature. American Association on Intellectual and Developmental Disabilities (AAIDD).

1 University of Illinois at Chicago, USA

2 University at Albany, New York USA

3 Splaine Consulting, Columbia, Maryland USA

4 São Paulo State University, Bauru, Brazil

5 American Academy of Developmental Medicine and Dentistry, Lumberton, New Jersey USA

6 University of Stirling, Scotland

Correspondence Address: Matthew P. Janicki University of Illinois at Chicago Department of Disability and Human Development (MC626) 1640 W. Roosevelt Road Chicago, IL 60608 USA Email: mjanicki@uic.edu

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) 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.

Aging and Dementia Care for People with Intellectual Disabilities

 Thursday, February 16, 2017

3:00pm | Eastern Daylight Time

Presented by: Matthew Janicki, PhD

Many organizations are seeing the aging of their clientele and their numbers increase, and concerns are growing about how to deal with age-associated effects evidenced with aging. One such age-associated condition, Alzheimer’s disease (and related dementias), affects a significant number of adults with Down syndrome (about 65% of adults age more than 60) and a proportional number of adults with other causes of intellectual disability (about 6% of adults age more than 60). Many at-risk adults live on their own or with friends, and many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of such affected adults. This webinar covers key elements of dementia and how it affects adults with intellectual disabilities, provides a brief overview of screening and assessment strategies and methods, and examines ways that organizations can employ to adapt their current services to make them dementia capable. Specifically covered are the elements and types of dementia, as well its onset, duration and effect, and techniques for adapting environments, aiding with staff interactions and communication, as well as challenges to active and supportive programming. Models for supports depending on the stage of dementia are also discussed, as are training foci areas and community care models that provide for “dementia capable” supports and services. Special attention is given to the use of group homes as a viable community care model.

Matthew P. Janicki, Ph.D. is the co-chair of the US National Task Group on Intellectual Disabilities and Dementia Practices, research associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago and Director for Technical Assistance for the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD) at the University.

 Play recording (1 hr 4 min)

Webinar-4_Janicki