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Lecanemab (Leqembi®) is a therapeutic approved in the United States for the treatment of Alzheimer’s disease (AD) to be initiated in early AD (mild cognitive impairment [MCI] due to AD or mild AD dementia) with confirmed brain amyloid pathology. Appropriate Use Recommendations (AURs) are intended to help guide the introduction of new therapies into real-world clinical practice. Adverse events may occur with lecanemab including amyloid related imaging abnormalities (ARIA) and infusion reactions. Monitoring guidelines for these events are detailed in this AUR. Most ARIA with lecanemab is asymptomatic, but a few cases are serious or, very rarely, fatal. Microhemorrhages and rare macrohemorrhages may occur in patients receiving lecanemab. Anticoagulation increases the risk of hemorrhage, and the AUR recommends that patients requiring anticoagulants not receive lecanemab until more data regarding this interaction are available. Patients who are apolipoprotein E ε4 (APOE4) gene carriers, especially APOE4 homozygotes, are at higher risk for ARIA, and the AUR recommends APOE genotyping to better inform risk discussions with patients who are lecanemab candidates. Patients and their care partners must understand the potential benefits, the potential harms, and the monitoring requirements for treatment with this agent. “Persons with Down syndrome develop AOAD and are amyloid positive. There is an increased occurrence of CAA in patients with Down syndrome and they should be excluded from treatment with lecanemab. Clinical trials for patients with Down syndrome are under consideration and additional data including information that may guide the use of lecanemab in this population are expected.” [p. 13] Source: Cummings, J., Apostolova, L., Rabinovici, G.D. et al. Lecanemab: Appropriate Use Recommendations. J Prev Alzheimers Dis (2023). https://doi.org/10.14283/jpad.2023.30

Lecanemab: Appropriate Use Recommendations

Journal article

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.

End-of-life and Down syndrome: A companion guidebook to aging and down syndrome: A health and well-being guidebook

Resource guide

This NINDS publication is meant to help people with Lewy body dementia, their families, and professionals learn about this disease and resources for coping. It explains what is known about the different types of Lewy body dementia and how they are diagnosed. Information about the treatment and management of this disease, with practical advice for both people with Lewy body dementia and their caregivers is provided. Source: Pub ID: NINDS-18-AG-7907. https://catalog.ninds.nih.gov/publications/lewy-body-dementia-information-patients-families-and-professionals

Lewy Body Dementia: Information for Patients, Families, and Professionals

Resource publication

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This NINDS booklet is designed to help people with frontotemporal disorders and their families learn more about these conditions and resources for coping. The publication provides detailed information about the three major types of frontotemporal disorders: progressive behavior/personality decline (such as Pick's disease), progressive language decline (including primary progressive aphasia), and progressive motor decline. Common symptoms, causes, and diagnosis are discussed. Information about the treatment and management of these disorders, with practical advice for both people with frontotemporal disorders and their caregivers, is provided. Source: Pub ID: NINDS-19-AG-6361. NINDS. (2018). https://catalog.ninds.nih.gov/sites/default/files/publications/frontotemporal-disorders-information-patients-families-caregivers.pdf

Frontotemporal Disorders: Information for Patients, Families, and Caregivers

Resource publication

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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. 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. 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. 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. Source: Dodd K, Watchman K, Janicki MP, Coppus A, Gaertner C, Fortea J, Santos FH, Keller SM, Strydom A. Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support. Aging Ment Health. 2018 Nov;22(11):1406-1415. doi: 10.1080/13607863.2017.1373065. Epub 2017 Sep 7.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Post-Diagnostic Support

Journal article

The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person's prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co-morbidity, including particular attention to late-onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, co-morbidities, immobility and neuropathological deterioration. The Summit recommended an investment in research to more clearly identify measures of person-specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment. Source: McCarron M, McCallion P, Coppus A, Fortea J, Stemp S, Janicki M, Wtachman K. Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia. J Intellect Disabil Res. 2018 Jul;62(7):617-624. doi: 10.1111/jir.12500. Epub 2018 May 20.

Supporting Advanced Dementia in People with Down Syndrome and Other Intellectual Disability: Consensus Statement of the International Summit on Intellectual Disability and Dementia

Journal article

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. 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. 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. The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia. Source: McCallion P, Hogan M, Santos FH, McCarron M, Service K, Stemp S, Keller S, Fortea J, Bishop K, Watchman K, Janicki MP; Working Group of the International Summit on Intellectual Disability and Dementia. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia. J Appl Res Intellect Disabil. 2017 Nov;30(6):1160-1164. doi: 10.1111/jar.12349. Epub 2017 May 9.

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

Journal article

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Aducanumab is an amyloid-targeting monoclonal antibody delivered by monthly intravenous infusions. The pivotal trials included patients with early AD (mild cognitive impairment due to AD and mild AD dementia) who had confirmed brain amyloid using amyloid positron tomography. As clinicians require guidance on the appropriate use of this new therapy, an Expert Panel was assembled to construct Appropriate Use Recommendations based on the participant populations, conduct of the pivotal trials of aducanumab, updated Prescribing Information, and expert consensus. The Expert Panel recommended that use of aducanumab be restricted to this population in which efficacy and safety have been studied. As aducanumab is titrated to a dose of 10 mg/kg over a 6-month period, the Expert Panel recommended that the aducanumab be titrated to the highest dose to maximize the opportunity for efficacy. Given that aducanumab can substantially increase the incidence of amyloid-related imaging abnormalities (ARIA) with brain effusion or hemorrhage, dose interruption or treatment discontinuation is recommended for symptomatic ARIA and for moderate-severe ARIA. The Expert Panel recommended the use of MRIs prior to initiating therapy, during the titration of the drug, and at any time the patient has symptoms suggestive of ARIA. The Expert Panel also recommended that measures less cumbersome than those used in trials be used for the assessment of effectiveness in the practice setting. The Expert Panel emphasized the critical importance of engaging in a process of patient-centered informed decision-making that includes comprehensive discussions and clear communication with the patient and care partner regarding the requirements for therapy, the expected outcome of therapy, potential risks and side effects, and the required safety monitoring, as well as uncertainties regarding individual responses and benefits. Source: Cummings J, Aisen P, Apostolova LG, Atri A, Salloway S, Weiner M. Aducanumab: Appropriate Use Recommendations. J Prev Alzheimers Dis. 2021;8(4):398-410. doi: 10.14283/jpad.2021.41.

Aducanumab: Appropriate Use Recommendations

Journal article

Biogen's notice on 8/4/21 offered as an educational resource for healthcare providers in response to an unsolicited request by Dr. Seth Keller, co-President of the NTG. The notice indicated that aducanumab-avwa has not been studied in persons with Down Syndrome associated Alzheimer’s disease (DS AD), and there there are no data on the efficacy and safety in this population. The notice cites the work of Cummings et al (2021) which acknowledges as that there are many differences between Down syndrome and late onset AD and as such, it is recommended against treating persons with Down syndrome with aducanumab-avwa until more data are available. According to Cummings et al., persons with Down syndrome may eventually become eligible for treatment after additional studies have been conducted and additional data are accrued for this group of individuals. It also cites various sources, including the NTG, recommending the generation of more applicability and use protocols.

Biogen commentary on Aduhelm and Down syndrome

Report

Book chapter from McGuire & Chicoine [Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges (2nd Edition), 2021] addressing a phenomenon where teens or young adults with Down syndrome experienced a puzzling decline in abilities. These individuals, usually in their twenties or younger, suddenly lost speech, cognitive, and daily living skills and often had behavioral or psychological changes. This “regression” has people with Down syndrome experiencing a puzzling decline in abilities and is reported to occur following a period of stable functional skill acquisition in young adolescents or adults as described by their families.

Regression (Down Syndrome)

Book chapter

This recently updated second edition of Mental Wellness in Adults with Down Syndrome reflects both the breadth of the authors' knowledge - acquired as co-founders of the first medical clinic dedicated solely to the care of adults with Down syndrome - and the number of psychosocial issues and mental disorders that can affect people with Down syndrome. It is a 'go-to' guide for parents, health practitioners, and caregivers who support teens and adults with Down syndrome. Its focus is on mental wellness and the understanding and appreciation that both the strengths and challenges of people with Down syndrome are the key to promoting good mental health. Readers will learn to distinguish between bona fide mental health issues and common characteristics of Down syndrome and whether these are quirks or coping strategies. For example, although talking to oneself can be a sign of psychosis, many adults with Down syndrome use self-talk as an effective problem-solving strategy. The second edition includes new chapters on sensory issues and regression, chapters on communication, concrete thinking, and visual memory, and an extensively updated chapter on Alzheimer's disease citing new research. Other chapters cover a range of conditions and assessment and treatment options. Source: Dennis McGuire, PhD & Brian Chicoine, MD, (2021), Woodbine House Publishing (with 2nd Ed. rights for self-publish reverted to the authors), 588pp.

Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges (2nd Ed.)

Book

Abstract: Down syndrome (DS) lacks a suitable outcome measure for prevention trials targeting pre-dementia stages. Authors used cognitive test data collected in several longitudinal aging studies internationally from 312 participants with DS without dementia to identify composites that were sensitive to change over time and then conducted additional analyses to provide support for the utility of the composites. The composites were presented to an expert panel to determine the most optimal cognitive battery based on predetermined criteria and the panel found that there were common cognitive domains across site composites, which were sensitive to early decline. The final composite consisted of memory, language/executive functioning, selective attention, orientation, and praxis tests. The authors have identified a composite that is sensitive to early decline and thus may have utility as an outcome measure in trials to prevent or delay symptoms of AD in DS.

Markers of early changes in cognition across cohorts of adults with Down syndrome at risk of Alzheimer’s disease

Journal Article

This document, released on February 21, 2023, was issued jointly by the NTG and the Health Matters Program as part of an advisory series on risk reduction in adults with intellectual disability and promoting healthy brain outcomes. The advisory recognizes that in some instances overmedicating can have negative effects on physical and brain health, as well as potentially increase the risk for mild cognitive impairment or dementia. The intent of the advisory is that the information provided will lead to constructive scrutiny of medication use, avoid “medication harm’, and result in positive health outcomes.

Over-Medication and Older Adults with Intellectual Disability: Risks for Brain Health (Statement)

NTG Statement

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 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. Covers a number of relevant topics.

Dementia and People with Learning [Intellectual] Disabilities

Guidance

LuMind IDSC has noted that there remain substantial barriers to Leqembi being deemed safe and accessible for people with Down syndrome, as no one with Down syndrome was included in the Leqembi clinical trials to date. LuMind IDSC recommends that a safety study specifically geared to people with Down syndrome should take place prior to widespread use in the Down community.

Lecanemab For Treating Alzheimer’s Disease: New Clinical Trial Results from Patients with Early-Stage Disease

Statement

Congress passed explicit language as part of Older Americans Act reauthorization that persons experiencing younger-age onset of dementia are eligible for OAA services.

Statement on the Implications of the ‘Younger-Onset’ Provisions of the Supporting Older Americans Act of 2020 for Families of People with Intellectual Disability Affected by Dementia

Statement

Aging adults with Down syndrome (DS) develop Alzheimer disease neuropathology (AD) by the age of 40 years, primarily due to the overexpression of the amyloid precursor protein on chromosome 21. Lewy bodies (LBs) are observed in 7-60% of AD patients in the amygdala and in cortex. As we hypothesized that LB pathology would also be present in DS brain with similar locations and prevalence to AD, we evaluated the frequency of LB in a cohort of DS cases collected over the past 25 years. Neuropathology reports from 55 cases with DS were included in this study. We identified 6 cases (10.9%), all male, with a mean age of 57 years (SD=3) that showed LB and/or Lewy neurites. Five cases were BRAAK stage 6 and one was stage 5. The observation that all our LB positive cases were male may reflect a sample bias. In our study, Lewy pathology was most common in amygdala but other sites of involvement are seen similar to a prior DS study and AD studies. Prior DS studies (n=20-56 cases) found the frequency of LB pathology to range between 8-50% of cases being affected. The prevalence of LB in our DS cohort (10.9%) is in the low end of the range seen in other DS and AD studies. Source: Movassaghi, M., Lou, J.J., Wright, S., Silva, J., Leavy, K., Kim, R., Monuki, E.S., Perez-Rosendahl, M., Head, E., & Yong, W.H. Lewy body pathology and Alzheimer disease in Down syndrome. American Journal of Clinical Pathology, 2022 Nov., 158(Supp 1), S33, https://doi.org/10.1093/ajcp/aqac126.059

Lewy body pathology and Alzheimer disease in Down syndrome

Journal article

The presence of cortical senile plaques and neurofibrillary tangles sufficient to warrant a neuropathological diagnosis of Alzheimer's disease is well established in middle-aged individuals with Trisomy 21 (Down's syndrome). In contrast a relationship between Down's syndrome and Lewy bodies, one of the major neuropathological features of Parkinson's disease, has not been previously reported. In a clinico-neuropathological survey of 23 cases of Down's Syndrome, two patients, aged 50 and 56 years respectively, were found to have Lewy body formation in the substantia nigra in addition to cortical Alzheimer-type pathology. Neither case showed significant substantia nigra neuron loss although locus coeruleus loss was present in both. Since substantia nigra Lewy bodies are a characteristic neurohistological feature of idiopathic Parkinson's disease, their occurrence in cases of Down's syndrome with evidence of Alzheimer-type pathology supports an aetiopathological connection between Parkinson's disease, Alzheimer's disease, and Down's syndrome; and suggests that common pathogenic mechanisms may underlie aspects of neuronal degeneration in these three disorders, some of which may relate to aberrant chromosome 21 expression. Source: Raghavan R, Khin-Nu C, Brown A, Irving D, Ince PG, Day K, Tyrer SP, Perry RH. Detection of Lewy bodies in Trisomy 21 (Down's syndrome). Can J Neurol Sci. 1993 Feb;20(1):48-51. doi: 10.1017/s0317167100047405. PMID: 8467429.

Detection of Lewy bodies in Trisomy 21 (Down's syndrome)

Journal article

The association between Down's syndrome (DS) and Alzheimer's disease is well established. This paper presents a review of the literature, suggesting a possible association between DS and the more recently recognised dementia with Lewy bodies (DLB). Patients with DLB frequently present with changes in affect and behaviour, and in particular with psychotic symptoms. The literature suggests a possible role for atypical neuroleptics in the management of psychosis in DLB. Source: Simard M, van Reekum R. Dementia with Lewy bodies in Down's syndrome. Int J Geriatr Psychiatry. 2001 Mar;16(3):311-20. doi: 10.1002/gps.342. PMID: 11288166.

Dementia with Lewy bodies in Down's syndrome

Journal article

Almost all Down syndrome (DS) patients over the age of 35 to 40 years have histologic features of Alzheimer's disease (AD). However, the presence of extrapyramidal features in up to 364 of these patients has no satisfactory pathologic explanation. We report an older patient with DS, dementia, and parkinsonian signs who showed pathologic changes of Parkinson's disease and cortical Lewy bodies in addition to AD. These parkinsonian changes may be related to chromosome 21 abnormalities. Source: Bodhireddy, S., Dickson, D.W., Mattiace, L., & Weidenheim, K.M. A case of Down's syndrome with diffuse Lewy body disease and Alzheimer's disease. Neurology Jan 1994, 44 (1) 159; DOI: 10.1212/WNL.44.1.159

A case of Down's syndrome with diffuse Lewy body disease and Alzheimer's disease

Journal article

The possibility of an association between Parkinson's disease and Alzheimer's disease has been examined by studying the age-specific prevalence of Lewy bodies in the substantia nigra in a group of 273 control cases without Parkinson's disease and 121 cases of Alzheimer's disease. The substantia nigra was also studied in 14 cases of Downs syndrome, 13 of which had cortical Alzheimer pathology. No case of Down's syndrome had Lewy bodies. Counts of tangles and plaques in hippocampus, frontal and temporal cortex were lower in cases of Alzheimer's disease with Lewy bodies compared with those without, but cortical choline acetyltransferase (ChAT) activities were similar. The relatively small difference in the prevalence of Lewy bodies between controls and Alzheimer's disease could be explained by the additive effects of Lewy body and tangle pathology causing dementia, rather than a greater than chance association between Parkinson's disease and Alzheimer's disease. Source: Gibb, W.R., Mountjoy, C.Q., Mann, D.M., & Lees, A.J. A pathological study of the association between Lewy body disease and Alzheimer's disease. Journal of Neurology, Neurosurgery & Psychiatry, 1989, 52, 701-708. http://dx.doi.org/10.1136/jnnp.52.6.701

A pathological study of the association between Lewy body disease and Alzheimer's disease.

Journal article

Dementia with Lewy bodies (DLB) is the second commonest cause of dementia in the general population. Several researches have established an association between Down syndrome (DS) and Alzheimer’s disease. Very few studies have however showed such an association between dementia with Lewy bodies and Down syndrome. The occurrence of DLB in persons with DS is widely unrecognized. We report the first case of a person who fulfils the operational criteria for DLB and was also found to have Lewy bodies on neuropathological examination. It is important to make an early and accurate diagnosis as patients with DLB may respond differently than Alzheimer’s dementia patients to certain behavioural and medical treatments. Source: V. P. Prasher, E. Airuehia, M. Carey. The first confirmed case of Down syndrome with dementia with Lewy Bodies. Journal of Applied Research in Intellectual Disability, 2010, 23(3), 296-300. https://doi.org/10.1111/j.1468-3148.2009.00526.x

The First Confirmed Case of Down Syndrome with Dementia with Lewy Bodies

Journal article

The article describes the effectiveness of a series of 10 ECHO sessions over 12 months which provided content on ID and AD/ADRD for 145 providers in over 20 agencies and discusses the series impact which was assessed by a follow-up survey sent to participants after each program. The study shows how Project ECHO can bridge gaps and span boundaries between the ID and aging care systems at multiple levels, improving interprofessional collaboration and care by addressing both knowledge and networking needs of providers. Source: Phillip G. Clark, Edward F. Ansello, Faith Helm, and Ray Tanzer. Gerontology & Geriatrics Education, 2023. https://doi.org/10.1080/02701960.2023.2168269

Growing older with intellectual and developmental disabilities: implementing and evaluating a project ECHO for dementia education

Journal article

Bibliography of a number of journal articles and other print and web resources specifically addressing COVID-19 and intellectual disabilities. These publications stem from 2020 to the present and represent the product of an extensive search via the web. The bibliography is updated periodically, so check back for the latest version. The bibliography is the effort of a joint project between the NTG and the Health Matters Program's Healthy Brain Initiative (funded by a grant from the Centers for Disease Control and Prevention). 

COVID-19 and Intellectual Disabilities Bibliography

Working bibliography - Current v1'6'23

A team of specialists who work extensively with adults with intellectual disability promulgated these Consensus Recommendations for the Evaluation and Management of Dementia in Adults With Intellectual Disabilities as a framework for the practicing physician who assesses adults with intellectual disability.

The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities

Resource document

Dr. Sunjay Gupta noted in his newsletter that the NTG's recommendations for assessing patients with intellectual disabilities are intended to help provide healthcare professionals the information they need for the "detection of any cognitive impairment". He also noted that this requirement appears in the Medicare Annual Wellness Visit component of the Affordable Care Act.

Dementia in Mentally Disabled Hard to Identify

Resource document

Educational presentation given at the Winter Meeting of ACCSES held in Phoenix, AZ, on January 16, 2023. The presentation covers the medical aspects of dementia in adults with intellectual disability, co-incident conditions, therapeutic pharmaceuticals, biomarkers, and general health and medical practices. This is Part 2 of a three-part presentation session (Given by Dr Seth M. Keller).

Importance in Overall Health in Adults with Intellectual Disability and Dementia

Educational Presentation

Educational presentation given at the Winter Meeting of ACCSES held in Phoenix, AZ, on January 16, 2023. The presentation covers the US National Plan to Address Alzheimer's, some basics about dementia and particulars about dementia and intellectual disability, planning considerations for organizing dementia support service, and agency dementia services and administrative issues. This is Part 1 of a three-part presentation session (Given by Dr. Matthew P. Janicki).

Intellectual Disability and Dementia Practice

Educational Presentation

Book chapter that provides an introduction to the topic of dementia in persons with developmental disabilities and covers the physiology of dementia, options for services, mechanisms for multidisciplinary management, and advances in advocacy, dementia prevention, and dementia research.

Implications of dementia for adults with developmental disabilities

Book chapter

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The F.D.A. included narrower and more cautionary language on the drug label than it initially had with Aduhelm. The Leqembi label says the drug should be used only for patients in early and mild stages of Alzheimer’s disease, matching the status of patients in the clinical trials of the drug. It instructs doctors not to treat patients without doing tests to confirm that they have one of the hallmarks of Alzheimer’s: a buildup of the protein amyloid, which Leqembi is designed to reduce.

Legembi - FDA Prescriptive Information

Drug label information

Congressional report on the regulatory review and approval, pricing, and marketing of biotechnology company Biogen Inc.’s Alzheimer’s disease drug, aducanumab, known more commonly by its trade name, Aduhelm.

The High Price of Aduhelm’s Approval: An Investigation into FDA’s Atypical Review Process and Biogen’s Aggressive Launch Plans

Report

Food and Drug Administration on January 7, 2023, approved another Alzheimer’s drug that may modestly slow the pace of cognitive decline early in the disease, but also carries risks of swelling and bleeding in the brain.

F.D.A. Approves Lecanemab as New Treatment for Early Alzheimer’s

Newspaper article

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.

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

Journal article

This Down Syndrome Medical Interest Group-USA updated summary covers what is known about this phenomenon and provides sections on 'what is regression?", 'what are some some of the symptoms associated with Down syndrome regression?", "How to get evaluated", "What are other causes of regression", "what test are available?", and is there a treatment?".

Regression in Persons with Down Syndrome: Current Consensus Update for Families

Resource document

This bibliography is a working document that contains select general population publications related to Long-COVID with possible implications for intellectual disability. Currently, there is a dearth of publications related specifically to Long-COVID. As they appear, they will be added to future versions of this bibliography.

Long-COVID and Intellectual Disability Bibliography

Working bibliography

Concerns over the impact of Long-COVID upon adults with intellectual disability and the omission of clear guidance on this issue as lead the NTG to prepare an "Advisory on Long-COVID and Impact on Cognitive Function in Adults with Intellectual Disability." The document is now available for download and use via this website. The Advisory contains the NTG's position on this condition and addresses the background and definition of the cognitive aspects of Long-COVID, its symptoms and effects, what to look for with respect to symptoms, and what agencies and others can do to help adults affected by Long-COVID. The Advisory covers these main points: (1) Long-COVID can include ‘brain fog’ (problems with thinking, motivation, and carrying out life activities); (2) Adults with intellectual disability infected with the SARS-COV-2 variant virus may experience Long-COVID, (3) Partners, families, and agencies need to be on the ‘look-out’ for changes in cognitive functions that may be due to Long-COVID; (4) Screening and assessment should be undertaken to determine presence of Long-COVID; (5) Accommodations and adaptations should be put in place to help mitigate effects of Long-COVID.

Advisory on Long-COVID and its cognitive effects on adults with intellectual disability (Statement)

NTG Statement

NTG Long-COVID statement applicable to direct support professionals.

NTG Statement on LONG-COVID, Intellectual Disability, and Dementia and Direct Support Professionals

Resource document

An extensive bibliography on a range of published studies, articles, videos, guides, etc., on care management and adults with intellectual disability associated with older age and dementia. Articles, media, books, book chapters and 'grey' materials are included along with abstracts and sourcing information.

Bibliography on Dementia Care Management and Intellectual Disability

Working bibliography

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

Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel

Resource document

A closer look at the CMS decision on Aduhelm and anti-amyloid drugs - an explainer for the Down syndrome community.

CMS decision on Aduhelm: An Explainer by LuMind IDSC

Resource document

CMS released this toolkit to combat the COVID-19 pandemic within nursing homes. It is designed to aid nursing homes in the US to receive virtual technical assistance for homes that have an opportunity for improvement based on an analysis of previous citations for infection control deficiencies using publicly available data found on Nursing Home Compare. This effort augments the CMS's five-part plan to ensure safety and quality in America’s nursing homes and recent agency efforts to combat the spread of COVID-19 within these facilities.

CMS Best Practices Toolkit for Nursing Homes to Combat COVID-19

Reference

An updated COVID-19 and Down Syndrome Resources Guide is now available. Covered is new information on the Delta variant, current safety recommendations, and important updates useful to families, organizations, and adults with Down Syndrome.

COVID-19 and Down Syndrome Resources Guide

Resource document

A comprehensive FAQ issued by the NTG's Medical Advisory Group on questions that were raised about Biogen's new medication for treating Alzheimer's disease still has relevance even though Biogen has withdrawn Aduhelm from production. "We are glad to make this available to families and providers who have questions and concerns about the use of this new medication," said Dr. Seth Keller, the MAG leader.

NTG's FAQ on aducanumab and Down syndrome

Resource document

Holingue et al. looked at identifying obstacles associated with screening and assessment of dementia among older adults with ID in a crisis-prone population. The NTG-EDSD was administered to enrollees aged 50 years and older in the START program. The authors noted that the NTG-EDSD provided a helpful way to collect information and document changes in the enrollees' functioning and that the NTG-EDSD may be helpful for capturing potential dementia-associated changes over time in crisis-prone adults with ID, though obstacles remain to the access of further evaluation for dementia.

Screening for dementia among adults with intellectual disability: Outcomes from a pilot study

Journal article

Virtual presentation on intellectual disability and possible application of aducanumab to the ACCSES organization on August 5, 2021

Aducanumab: Panacea or Risk for Adults with Down Syndrome

Conference presentation

Virtual presentation on aducanumab and implications for state I/DD agencies to the Medical & Clinical Director's Work Group of the National Association of State Directors of Developmental Disabilities Services on August 4, 2021

New Alzheimer’s Drug and Considerations for State I/DD Agencies: Aducanumab: Panacea or Risk for Adults with Down Syndrome

Conference presentation

NTG issued statement on use of Aduhelm by persons with Down syndrome. This statement, the result of a collaborative effort coordinated by the NTG Aduhelm and Down Syndrome Medical Advisory Group, was led by Seth M. Keller, MD, Co-President of the National Task Group on Intellectual Disabilities and Dementia Practices.

Aducanumab and Persons with Down Syndrome: What Do We Do Now? (Statement)

Resource document

Published version of statement on the use of Aduhelm among adults with intellectual disability in Exceptional Parent (July 2021)

Aduhelm: Rush to Judgement?

Journal article

Abstract: Cerebral palsy (CP) neurologic care and research efforts typically focus on children. However, most people with CP are adults. Adults with CP are at increased risk of new neurologic conditions, such as stroke and myelopathy, that require ongoing neurologic surveillance to distinguish them from baseline motor impairments. Neurologic factors could also contribute to the motor function decline, chronic pain, and chronic fatigue that are commonly experienced by adults with CP. Based on a systematic literature review, we suggest (1) guidelines for neurologic surveillance and neurologist referral and (2) clinical research questions regarding the evolving neurologic risks for adults with CP.

Adults with cerebral palsy require ongoing neurologic care: a systematic review

Journal article

Ryan, M., Tuso, A., & Herge, A.. (2021). Usefulness of the NTG-EDSD: Evaluating the Validity of a Screening Tool for Dementia in Adults with Intellectual Disabilities.  Doctorate of Occupational Therapy Program Capstone Presentations. Paper 22.

Usefulness of the NTG-EDSD: Evaluating the Validity of a Screening Tool for Dementia in Adults with Intellectual Disabilities

Presentation

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