Improving Care for Populations Disproportionally Affected by Alzheimer’s Disease and Related Dementias. Recommendations that are Being Addressed by Existing Work


For the following recommendations, the Task Force identified work that is currently underway that will address the issue.

  1. Stakeholders say that providers of health and long-term services and supports (LTSS) need more access to dementia awareness and training activities. Stakeholders recommend that these activities be developed, promoted, and carried out.

    Through four grant programs funded by HRSA, trainings on dementia have been developed and will be carried out for providers across specific populations in 2012 and 2013. Four specific areas of this training include:

    1. The CGEP funds schools of nursing, health care facilities, and programs leading to certification as a nurse assistant who will serve elderly persons. Through this program, grantees develop and disseminate curricula relating to the treatment of geriatric health problems, train faculty members in geriatrics; provide continuing education to individuals who provide geriatric care, or establish traineeships for individuals who are preparing for advanced education nursing degrees in geriatrics. Many of these grantees provide inter-professional training on Alzheimer's disease including specific populations addressed in this report.

    2. The Geriatric Academic Career Award (GACA) supports career development of physicians, nurses, social workers, psychologists, dentists, pharmacists, and allied health professionals in academia to provide training in clinical geriatrics including the training of inter-professional teams of health professionals. Current programs support training related to Alzheimer's disease including specific populations addressed in this report.

    3. The GECs provide inter-professional geriatric education and training to health professionals and others students. This includes training on the latest clinical guidelines and information on how to work with people with Alzheimer's disease and their families. Health care providers learn how to manage the disease while coordinating care in the context of other health conditions, and how to link people to support services in the community. Training also addresses caregiver burden and depression. Health care providers are also trained on the tools available to detect cognitive impairment and appropriate assessment processes for diagnosis of Alzheimer's disease and related dementias. All of the GECs received supplemental funding in FY 2012 to provide inter-professional training on Alzheimer's disease and related dementias including specific populations addressed in this report.

    4. The GTPD supports geriatric training projects for physicians, dentists and behavioral and mental health professionals who plan to teach geriatric medicine, dentistry, or behavioral or mental health. All grantees provide training on the assessment, diagnosis, treatment, management, and evaluation of Alzheimer's disease and related dementias, including specific populations addressed in this report. All grantees also provide training on the broader issue of mental and behavioral health among older adults.

    It is important that providers are aware of these and other training opportunities and that training be widely available to providers, including those who are knowledgeable about specific populations but who do not typically serve people with dementias. Opportunities to maximize current training programs may be further promoted and refined for specific populations through existing efforts or realigned efforts including those of HRSA, ACL, and the Centers for Medicare and Medicaid Services (CMS). For example, there may be opportunities to partner with the private sector through the University Centers for Excellence in Developmental Disabilities (UCEDD), a network created through AIDD and the Developmental Disabilities Assistance and Bill of Rights Act of 2000. Other private sector entities, with specialized knowledge and skill regarding specific populations, may be engaged in training and information dissemination.

  2. Stakeholders recommend that there be a registry for those with Down syndrome and dementia.

    NIH has an existing registry for those with Down syndrome and dementia. Stakeholders may need additional information about this registry to be disseminated to their networks.

  3. Stakeholders suggested several general and specific areas for research regarding specific populations.

    A meeting to develop research priorities around Alzheimer's disease and Down syndrome is scheduled for May 1-2, 2013, at NIH. Other suggestions for research have been shared with NIH.

  4. Stakeholders assert that there is potential for exploitation of specific populations in clinical trials and other research approaches and safeguards against exploitation need to be woven into research procedures.

    Discussions with the National Human Subjects Research Council and the NIH Office of Ethics in Research are important to address these efforts. Additional information may be found through the Alzheimer's Association which has developed an ethics statement for research participants:

  5. Stakeholders point to a lack of person-centered planning and recommend that programs and policies employ person-centered planning to the extent possible by pulling culture and family into this process.

    The Task Force noted that person-centered planning is the central approach that CMS, ACL, Indian Health Service (IHS), and VA are applying to many of the programs they fund. This issue is not limited to dementia only. All federal agencies could consider whether modifications are necessary to take into account cultural issues and family caregivers and educate providers and their networks accordingly.

  6. Stakeholders say that family members of persons with dementia should be encouraged to seek certification as providers under their state Medicaid waiver program. This step would enable family caregivers to receive payment for the care they deliver as part of a Medicaid HCBS plan.

    In many state Medicaid programs, it is possible for a family member to become certified as a provider through the state Medicaid system. The Task Force sees the potential opportunity for the private sector to support the dissemination of this information where appropriate. The Task Force will forward the recommendation to the National Resource Center for Participant-Directed Services for consideration in its work with state LTSS programs.

  7. Stakeholders recommend use of the medical home model for specific populations to increase their regular and appropriate access to health care.

    The Affordable Care Act (ACA) offers opportunities to expand access to the "health home" which expands "medical home" to access a range of community supports. This issue is broader than dementia.

  8. Stakeholders emphasized that maintaining typical home and community living was important to specific populations with Alzheimer's disease and related dementias and to their families.

    Given the history of segregation and discrimination [some] people with intellectual disabilities and their families have encountered across the lifespan, additional attention and vigilance in ensuring appropriate access to community living for this population is warranted. This attention should include alignment with the 1999 Olmstead Decision. Among all populations, family, culture and language must be factored into decisions of care within the community as well. HHS is sensitive to this concern and strives to ensure access to the least restrictive environment for all people.

  9. Stakeholders state that persons under age 65 with dementia must wait two years for Medicare once they are determined eligible for Social Security Disability Income and their families are not eligible for Medicare even after the waiting period is over. Stakeholders recommend that policies and programs address issues of access to health insurance coverage for persons under age 65 with dementia and their families.

    This need is being addressed through the ACA as people with younger-onset dementia will have access to expanded Medicaid or through the full roll out of the Affordable Insurance Exchanges. Implementation of ACA will also result in limiting exclusions for pre-existing conditions beginning January 1, 2014, addressing a concern of people experiencing younger-onset and their families.

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