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

Group home care for adults with intellectual disabilities and Alzheimer’s disease

Janicki, M.P. (2016). Stationäre Einrichtungen der Behindertenhilfe für Menschen mit geistiger Behinderung und dementieller Erkrankung [Group home care for adults with intellectual disabilities and Alzheimer’s disease].

In S.V. Müller and C. Gärtner (Eds.), Lebensqualität im Alter: Perspektiven für Menschen mit geistiger Behinderung und psychischen Erkrankungen [Quality of life in old age: prospects for people with intellectual disabilities and mental illness] (pp. 237-262). Wiesbaden, Germany: Springer Fachmedien
Read Group home care for adults with intellectual disabilities and Alzheimer’s disease.

Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study

Elisabeth L. Zeilinger, Claudia Gärtner, Matthew P. Janicki, Lucille Esralew & Germain Weber

Journal of Intellectual & Developmental Disabilities
Published online: 23 Nov 2015
http://dx.doi.org/10.3109/13668250.2015.1113238

ABSTRACT
Background

In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group – Early Detection Screen for Dementia (NTG-EDSD).

Method
Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing.

Results
All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group. Conclusions The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.

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Why do we need national guidelines for adults with intellectual disability and dementia?

New Article Highlights Need for National Practice Guidelines for Adults with ID and Dementia

Matthew P. Janicki and Seth M. Keller

The NIDILRR-funded Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD)  recently published an article, Why do we need national guidelines for adults with intellectual disability (ID) and dementia? in the open access journal Alzheimer’s & Dementia: Diagnosis, Assessment, & Disease Monitoring. The article introduces current research in dementia care practices and highlights the need for special guidelines for individuals with ID, for whom symptoms of dementia may be undiagnosed or misdiagnosed.

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities

Kathleen M. Bishop, Mary Hogan, Matthew P. Janicki, Seth M. Keller, Ronald Lucchino, Dawna T. Mughal, Elizabeth A. Perkins, Baldev K. Singh, Kathy Service, Sarah Wolfson, and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices (2015)

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, February 2015, Vol. 53, No. 1, pp. 2-29. doi: http://dx.doi.org/10.1352/1934-9556-53.1.2