NTG Related Publications

2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers

The NTG sponsored a pre-Summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers that was held on the NIH campus on October 16-17, 2017. The pre-Summit activitiy focused on various aspects of family caregiving in dementia and intellectual disability and was led by Prof. Tamar Heller of the University of Illinois at Chicago.  A workgroup of prominent researchers in the area of family caregiving and intellectual disability was assembled and were asked to develop a background paper on caregiver practices and supports to be used at the Summit. The Workgroup report details the work group processes, membership, background issues, and recommendations.


A journal version of the report was published following the Summit (See: Heller, T. Scott, H.M, Janicki, M.P., and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities.  Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 2018, 4(4), 272-282. DOI: https://doi.org/10.1016/j.trci.2018.06.002)


Abstract:  A specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health–located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. Experts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD‐related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda. Five major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability. Recommendations included increasing supports for caregivers of adults with IDDs and dementia; increasing research on community living settings and including caregivers of persons with IDDs in dementia research; acknowledging cultural values and practice diversity in caregiving; increasing screening for dementia and raising awareness; and leveraging integration of aging and disability networks.

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2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers 

The NTG submitted a background paper as a response to the NIH's request for information related to the upcoming Second National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. The Summit was to be held on March 24-25, 2020 but was cancelled due to the COVID-19 pandemic travel and gathering restrictions. 


As the Summit was to focus on a number of topics related to caregiving, the NTG's response focused on three main issues which differentiated caregiving among families with a member who has an intellectual disability and is affected by dementia.


These issues included:

  • presence of BPSD

  • dynamics of lifelong caregiving

  • access barriers to support services  

The NTG had representation on two of the Summit's stakeholder working groups, which were charged with presenting recommendations to the Summit's organizing committee. The summary of recommendations that the Summit was to release is pending and will be posted once it is released.


  • "What do I really need: Assessment of caregiver supports for people with intellectual and developmental disability and dementia".  Poster at 2020 Summit. Service, K., et al.. (2020). Poster accepted for inclusion at the Second National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers  Bethesda, MD: (March 24-25, 2020) . Click on poster image at right to view poster.

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AAIC 2020 Conference 

NTG Board members participated in the Alzheimer's Association International Conference - AAIC 2020 - with two 'Developing Topics' poster presentations.  These presentations will be cited in a Fall 2020 issue of Alzheimer's & Dementia: The Journal of the Alzheimer's Association


  • Nancy Jokinen, Kathryn Service, Christine Marsack-Topolewski, and Matthew Janicki addressed a "Support-staging model for caregivers of adults with intellectual diability affected by dementia". (#47273)  

ABSTRACT:  Adults with intellectual disability (ID) and dementia are a sub-population of persons who are often un- or underserved. Most adults with ID are integrated within the general community (living autonomously, or in apartments/group residences); but significant numbers also reside with their families, particularly adults with Down syndrome. Family help/counseling approaches, such as the New York University-Caregiver Intervention (NYUCI), might benefit from a support-staging model assessment focus on what specific aid a family requires to meet their needs. Patterns of such needs have been identified that can help with providing dementia-capable care.  Objective needs include: (a) information on signs and symptoms, (b) diagnostic advice, (c) understanding behavioral changes and managing dementia-related behaviors, (d) adapting homes, (e) determining daily routines most conducive to calming, (f) planning for the future, (g) finding and navigating resources, and (h) responding to end-of-life needs.  Subjective needs include: (a) being informed at time of diagnosis and throughout the course of dementia, (b) coping with a profound sense of loss from knowing the diagnosis, (c) fearing the future [including financial concerns], (d) formulating long-term plans, (e) accessing community-based coordinated care, (f) facing difficulties from the medical community, (g) feeling overwhelmed by caregiving demands, (h) feeling a sense of isolation and abandonment, and (i) facing end-of-life issues.  A working group emanating from the 2016 Glasgow Summit on Intellectual Disability and Dementia organized a schema encapsulating these concerns into a support-staging model. The schema suggested four fluid stages: Diagnostic (seeking cause of changes in function, abilities, personality), Explorative (exploring dementia capable interventions), Adaptive (coping with and managing the symptoms/changes), and Closure (resolving / relief from responsibilities). Using this schema, a process (utilizing the NYUCI) is underway to operationalize a support-staging assessment instrument which would enable counseling staff to frame the state of a family’s concerns, build relationships through this knowledge of the caregiver and provide tailored services to them.  The outcome will enable systematic coding and organizing both objective and subjective data so that specific interventions and counseling can be adapted to meet both intermittent and continuous caregiver needs.

47274_Support-Staging Model for Caregive

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  • Matthew Janicki covered "Community-based housing and NPI-care practices for adults with intellectual disability and dementia". (#47061) 

ABSTRACT: Aging persons with intellectual disability (ID) represent a vulnerable population with respect to cumulative neuropathological conditions, including dementia. Adults with Down syndrome (DS), a subset, have a recognized high risk for Alzheimer’s disease. With dementia present, how to provide post-diagnostic supports is a challenge. Dementia care group homes (GHs) along with NPIs are emerging as a mode for providing out-of-home community supports. Data from a longitudinal study provide insights on what care organizations need to consider when organizing specialty group home care. The study, begun in 2011, followed three co-located homes providing NPIs to 15 adults with dementia. Findings revealed trajectories of changes over time, housing need/function level patterning, and health status outcomes. Key findings noted 3 age-of-admission clusters (ꭕ=50.5; ꭕ=57.1; χ=66.8); overall mortality (ꭕage-death=65.4; ID=69.3; DS=56.3) – half of original entrants died within 7 years; age at entry (ꭕ= 59.1); years from entry to death (ꭕ= 5.4 yrs); LOS (ꭕ=49.4 months/4.12 yrs); morbidities (number of co-morbidities decreased among survivors). In same period, 8/15 deaths in GHs vs 3/15 deaths in Controls. NPI-related practices included day program activities (adults in mid- to later stages were engaged in regular off-site day activities that agency provided; adults with advanced dementia remained in homes), staffing patterns differed based on level of care – more staff assigned to homes with residents with advanced dementia, and staff training included dementia capable communications, engagement, and managing daily routines. Trends showed adults with Down syndrome were admitted to homes earlier but had more life-years in the GHs than older adults admitted at later age but who succumbed earlier to disease complications. Dementia care GHs should expect varied trajectories of decline; mortality linked to complexity of pre-existing conditions and progression of dementia; changes in the focus of care needs over time (including advanced dementia and end-of-life care). Dementia care GHs can enable provision of in-community group housing and quality care in accord with stage-defined functional changes and needs if structured in a planful way (factoring in dementia-stage, type of dementia, mortality expectations, health status, patterns of care needs, dementia-related behaviors, aging-related issues, and probable trajectories of decline of the residents).

47061_Community-based Housing and NPI-ca

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Alzheimer Europe 2020 Conference

October 20, 2020: 16.45-18.00 (Barcelona)    Parallel session P5. Post-diagnostic support


  • P5.1. Shirley Evans (United Kingdom): How can Meeting Centres support people affected by dementia to adjust to change during a period of physical distancing?

  • P5.2. Matthew P. Janicki (USA): Planning dementia-capable community-based housing for adults with intellectual disability

  • P5.3. Alison Wheatley (United Kingdom): Exploring models of post diagnostic support in England

  • P5.4. Nikolas Dietzel (Germany): Needs of people with dementia and their caregivers: the Erlangen Needs Assessment in Dementia (ENA-D)

  • P5.5. Nis Peter Nissen (Denmark): Post diagnostic support has to come early and  be targeted to the whole family affected by dementia


Publications related to other topics

For publications related to the NTG-EDSD

For publications related to the NTG