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Dementia Guidelines

Many professional organizations, governmental entities, and clinicians and providers have issued guidelines or practice suggestions related to older adults with intellectual disability who may be suspected of have an additive cognitive impairment in later age. These are generally directed toward clinicians who may be asked to provide an assessment or diagnosis of whether the impairment is related to a brain disease, such as Alzheimer's, or another cause.  Some provide specific information for those clinicians already familiar with intellectual disability and some provide general overview information for general practitioners and other clinicians who may intermittently examine an adult with an intellectual disability. Noted below are some useful resources from various sources around the globe.

Guidelines for Assessment/Diagnostics/Care

Intellectual Disability and Dementia: A Caregiver's Resource Guide for Nebraskans
Intellectual Disability and Dementia: A Caregiver's Resource Guide for Nebraskans

The NTG aided the Nebraska Council on Developmental Disabilities and the Munroe-Meyer Institute in Omaha with the development 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.

Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders
Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

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'. ​

Keep Talking About Dementia
Keep Talking About Dementia

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.

Talking About Dementia: A Guide for Families, Caregivers and Adults with Intellectual Disability (RI Caregiver Guide Supplement)
Talking About Dementia: A Guide for Families, Caregivers and Adults with Intellectual Disability (RI Caregiver Guide Supplement)

This complementary supplement to the Rhode Island Caregiver Guide focuses on how to approach the conversation about someone with an intellectual disability experiencing cognitive changes and possibly having dementia.

Things to Know About Health (RI Caregiver Guide Supplement)
Things to Know About Health (RI Caregiver Guide Supplement)

This 17-page guide provides introductory information for families and others providing supports to an adult with an intellectual disability around aging, health, and signs of dementia. It covers information about diagnosing, attending to behaviors, creating a wellness environment, and offers contactable resources.

What is Dementia?
What is Dementia?

Booklet produced by Down Syndrome ScotlandAn illustrated booklet, produced by Down Syndrome Scotland, to explain what is dementia to persons with an intellectual disability

Edinburgh Principles
Edinburgh Principles

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.

Guidelines for Structuring Community Care and Supports for People With Intellectual Disabilities Affected by Dementia
Guidelines for Structuring Community Care and Supports for People With Intellectual Disabilities Affected by Dementia

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.

NADD Bulletin article on NTG-EDSD
NADD Bulletin article on NTG-EDSD

NADD Bulletin publication on the manual that accompanies the NTG-EDSD (original version)

A Guidance Document on Dementia in Persons with Intellectual Disability
A Guidance Document on Dementia in Persons with Intellectual Disability

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.

CARF International Standards Advisory Committee's Dementia Care Standards for Individuals with Intellectual or Developmental Disabilities
CARF International Standards Advisory Committee's Dementia Care Standards for Individuals with Intellectual or Developmental Disabilities

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.

Community Care and Supports for People with Intellectual Disabilities Affected by Dementia
Community Care and Supports for People with Intellectual Disabilities Affected by Dementia

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 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.

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