Dementia Guidelines

This NTG advisory addresses an issue that many community-based organizations may encounter when state officials must attest as to whether "heightened scrutiny" is needed to determine whether small dementia-capable group homes should be included in their HCBS waivers. The NTG contends that supporting specialized services for adults with intellectual disability living with dementia in group homes is in the spirit of both the Americans with Disabilities Act, as amended, and the Olmstead Decision, as it provides for safe housing in a least restrictive setting in the community, with specialized services that are appropriate to meet the needs of individuals with progressively diminishing cognitive and functional abilities. The NTG believes that recognition should be given to small dementia-capable group home settings as a proven best practice support model, which upholds the rights of adults with dementia to live in the community under HCBS waivers funded by the health and social service systems in each state. When properly funded, these settings can provide personalized care, promote well-being and safety from harm, give attention to changing nutritional and dietary needs, and engage residents in activities that mitigate memory loss and cognitive decline. The NTG also believes that recognition should be given to the advantages of small dementia-capable group homes when compared to the costs and outcomes of services that are provided in nursing facilities, because dementia-capable group homes are both less expensive on a per deim basis and more effective in enhancing the quality of life for individuals living with dementia.

Dementia Care Themes 2013 CARF, at a meeting involving the NTG, identified a number of topics which are considered priorities for standards that can be implemented by community-based organizations providing services and supports to the persons with intellectual disability. This document provides the top themes that were identified along with specific points related to each theme.

This version of the NTG guidelines, drawn from research, clinical experiences, and demonstrated best practices is a popularized document (see also Jokinen et al., 2013 for the journal version). The guidelines delineate what actions should be undertaken and are presented in a manner that reflects the progressive nature of prevalent dementias. To enable the development of the most appropriate and useful services and care management for adults with intellectual disabilities affected by dementia, the guidelines are based upon the dementia staging model generally accepted for practice among generic dementia services. The staging model follows the flow from a prediagnosis stage when early recognition of symptoms associated with cognitive decline are recognized through to early, mid, and late stages of dementia, and characterizes the expected changes in behavior and function. To aid with widespread efforts to detect possible symptoms of MCI or dementia, the guidelines cite the application of the NTG-Early Detection Screen for Dementia as a first step in documenting early signs of cognitive and functional changes among people with intellectual disabilities. The guidelines also provide information on non-pharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication, and nutritional issues.

A detailed instructional on how to use simple household objects and interactions to show proficiency in some tasks that reflect capability and neurological function. The protocol was developed for use by families or staff to record 'personal best' and for use overtime to assess continued or diminishing functional abilities.

This document describes the dementia diagnosis and healthcare pathway for people with an intellectual disability in the NHS Hertfordshire area of England. The pathway aims to support a standard approach to referrals for people with an intellectual disability where symptoms indicate or there may be a concern that the individual may be affected by dementia. The pathway guides the multi-disciplinary team around the individual through the sequence of events from referral to screening and diagnosis, and post-diagnosis. The aim is to ensure that a coordinated approach is taken by the multi-disciplinary team and the individual provided with the most suitable person-centered care with respect to diagnosis and healthcare provision. The guideline also provides information on using the NTG-EDSD for screening and assessment.

This is a comprehensive guide to various facets related to dementia in adults with intellectual disability, including assessment and diagnostics, care management, and other topics. See page 27 for commentary on the NTG-EDSD. (2015 updated version)

Source: British Psychological Society. (2015). Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities who Develop Dementia – Update. Leicester, United Kingdom: Author.

This UK government produced guide to intellectual disability and dementia, notes that carers who look after people with intellectual disabilities are met with an increasing number of adults who are developing dementia. Addressing this challenge requires reasonable adjustments to public health initiatives on prevention, NHS dementia diagnostic services, health and social care for people with dementia and their families, and services for people with intellectual disabilities. This guide covers a number of relevant topics.

Overview guide to assessing adults with intellectual disability suspected of having symptoms of a later life cognitive impairment; designed an an information overview for general practitioners in Australia.

A guide ostensibly designed for assessing adults with autism for dementia, but most of the focus is on intellectual disability.
Source: Serafino Corti and Michela Uberti. Fondazione Instituto Ospedaliero di Sospiro - Onlis 2013

A historical article that covers the Edinburgh Principles -- seven statements identifying a foundation for the design and support of services to people with intellectual disability affected by dementia, and their carers. The accompanying guidelines and recommendations document provide an elaboration of the key points associated with the Principles and is structured toward a four-point approach: (a) adopting a workable philosophy of care; (b) adapting practices at the point of service delivery; (c) working out the coordination of diverse systems; and (d) promoting relevant research. Stems from an interdisciplinary collective meeting held in Edinburgh, Scotland convened to produce the principles.

This guidebook provides guidance for the crossroads and decisions that arise in later life and at the end of life. The information covered aims to be practical and supportive, with guidance and resources to help families, caregivers, care partners, and others. The intent is to help readers recognize and understand the
reasons that planning for your own future and having a backup plan for care of an adult Down syndrome at the end of life, including where dementia is present.

The NTG and the Lumind IDSC Foundation issued a comprehensive report on the barriers to determining MCI and dementia in adults with neuroatypical conditions, such as acquired brain injury, autism, cerebral palsy, Down syndrome, intellectual disability, serious mental illness, and significant sensory impairments. Developed by an Expert Panel, the report concludes that current federal guidelines for assessing for MCI or dementia do not provide sufficient information to assess such adults. The Panel recommended broadening federal guidance to include adaptations of assessment practices; expanding training for clinicians about such conditions; and undertaking research to produce more evidence-based information on assessing neuroatypical adults.

Source: Janicki, M.P., Hendrix, J., & McCallion, P. (Project Principals). (2022). Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel. www.the-ntg.org

This report, by the Irish Faculty of Learning Disability Psychiatry, provides information on persons with intellectual disability and dementia for their families and offers guidance to persons working in clinical settings. The report provides a series of recommendations related to the assessment and management of suspected or diagnosed cognitive decline or dementia. Although the report is designed from the Republic of Ireland services environment, its information applies to any country's care structures. The report contains a number of recommendations addressing plans for recognition and management of dementia, e baseline function screening, use of a multidisciplinary team, clinicians working together to assess and communicate the diagnosis of dementia, involving families and persons with dementia in discussions, providing comprehensive services, encouraging aging in place, providing palliative care, and ensuring that trainees specializing in psychiatry of intellectual disability should have training in diagnosis and management of dementia.

This SAMSHA Guidance reviews non-pharmacologic behavioral approaches and strategies to avoid and reduce prescribing of antipsychotics whenever possible for older adults with dementia and people with intellectual and developmental disabilities.

These guidelines, drawn from research and clinical experiences and demonstrated best practices, note what actions should be undertaken related to dementia in adults with intellectual disability. Framed by the staging model generally accepted for practice among generic dementia services, these guidelines flow from a prediagnosis stage when early recognition of symptoms associated with cognitive decline are recognized through to early, mid, and late stages of dementia, and characterizes the expected changes in behavior and function. The guidelines cite the application of the NTG-Early Detection Screen for Dementia as a first step in documenting early signs of cognitive and functional changes among people with intellectual disability and provide information on nonpharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication, and nutritional issues. These guidelines are the journal version.

Source: Jokinen, N., Janicki, M.P., Keller, S.M., McCallion, P., Force, F.T., and the National Task Group on Intellectual Disabilities and Dementia Practices. Journal of Policy and Practice in Intellectual Disabilities, 2013.

A comprehensive guide for family caregivers originally created by the NTG. The NTG aided the Nebraska Council on Developmental Disabilities and the Munroe-Meyer Institute in Omaha with this adaptation of the Intellectual Disability and Dementia: A Caregiver's Resource Guide for Nebraskans, a project led by Janet Miller of the University of Nebraska's Medical Center.

This is a resource guide for family caregivers, and others, that explains the basics of dementia, caregiving aids, and sources of help.  The guide was developed for use in Rhode Island, but is applicable in any state.  This is the main guide; see also the guide on 'health' and 'talking about dementia'. ​

This guide and issued by the Administration on Community Living provides background and practical strategies that can be used by professionals—from both the intellectual and developmental disability and aging communities—when working with individuals living with intellectual and developmental disabilities (IDD) and dementia. The guide is organized into 12 sections that address different aspects of identifying and providing services to individuals living with IDD and dementia or who are at risk of developing dementia. Included also are tools professionals can share with family caregivers or other caregivers who work with individuals living with IDD and dementia.

Link to web source page: https://www.rti.org/publication/intellectual-and-developmental-disabilities-and-dementia
Source: McCallion, P., Knowles, M., & Gould, E. (2019). Intellectual and developmental disabilities and dementia: Practical strategies for professionals. National Alzheimer’s and Dementia Resource Center for the U.S. Administration on Aging.

Booklet produced by Down Syndrome Scotland and designed for siblings and professionals with some basic checklists for conversation topics regarding dementia and Down syndrome. It looks at the most relevant issues that arise for siblings and professionals and provides topics that warrant being discussed.

An illustrated booklet, produced by Down Syndrome Scotland, which explains what it means when a family member has dementia. Designed for caregivers of persons with an intellectual disability.