The following ten recommendations were identified by the Task Force as having the potential to be addressed through federal activities, pending the availability of resources.
Stakeholders assert that the National Plan needs to address and incorporate strategies that are culturally and linguistically appropriate. For example, detection tools need to be created and defined as valid (or not valid) for specific populations.
The federal staff updating the National Plan will review the document to identify opportunities to address this recommendation. Further actions undertaken in the annual updates to the National Plan will seek to address this concern. Addressing this gap would help meet the need for information and service of an increasingly diverse population. Non-governmental groups may be effective in determining approaches to detection of Alzheimer's disease. OMH has been engaged in this effort.
Stakeholders say that primary care practitioners have insufficient training to recognize symptoms of possible dementia and to refer people with such symptoms to experts for an accurate diagnosis. Furthermore, practitioners should have access to this training.
This is an area for potential action through the Geriatric Education Centers (GECs), which provide interdisciplinary geriatric education and training to health professionals and others students. The GECs received supplemental funding in FY 2012 to provide inter-professional training on Alzheimer's disease and related dementias. In FY 2013, grantees will integrate information on specific populations into public and private provider awareness and training efforts. Both Comprehensive Geriatric Education Program (CGEP) and Geriatric Training for Physicians, Dentists, and Behavioral and Mental Health Providers (GTPD) programs could be asked to enhance outreach to primary care providers, as many of the current grantees offer significant amounts of continuing education related to dementia.
Stakeholders assert that the Alzheimers.gov website should increase availability of culturally appropriate resources for multiple communities, in addition to the resources already available in Spanish.
With future funding for Alzheimers.gov, there may be an opportunity for public-private partnerships to develop culturally appropriate resources to address this need. The OMH Resource Center may be engaged as consultants in developing translations and content. Reflecting the needs of our diverse society, languages beyond English and Spanish are important to the public seeking information about Alzheimer's disease. The OMH has provided expertise and sensitivity on cultural appropriateness to create and translate information on a range of health issues. In addition, it may be useful to consider public-private collaborations to address this need. Health Resources and Services Administration (HRSA) will be posting Alzheimer's disease assessment tools in multiple languages from its GEC grantees on its dementia website in FY 2013.
Stakeholders say that protection and advocacy networks nationwide do not have sufficient information regarding advanced care planning and options counseling for persons at risk of dementia and their families and that such information should be made available to these networks.
The Task Force believes that this information should be disseminated, even more broadly than the existing protection and advocacy systems for people with disabilities. In addition, the information disseminated should be broader than advanced care planning and options counseling. Additional information needed by all of the specific populations includes: care settings and financing, protection from abuse and neglect, options counseling for services, legal decisions, spiritual and religious preferences, and end-of-life planning. More tailored efforts to address the specific needs of the populations will likely be needed and may involve partnerships with the private sector. One example of a private sector effort is the ABA's work on younger-onset legal issues and future planning.
Stakeholders say that specific populations are not aware of, nor are they enrolled in, clinical trials in sufficient numbers; stakeholders recommend that clinical trials procedures address this.
Minority enrollment in clinical trials has historically been low, with traditional recruitment efforts not reaching these populations. Although rules to ensure broader minority enrollment in clinical trials are in place,8 enrollment of these populations remains low. Similarly, stakeholders, including clinicians and family members of people with Down syndrome, reported no awareness of ongoing clinical trials for this population.
The National Institute on Health (NIH) is addressing this recommendation through the National Plan, with the National Institute on Aging (NIA) and the Food and Drug Administration (FDA) taking the lead on the National Plan's Action 1.B.3.9 Increased public awareness of governmental efforts directed to stakeholders and health care providers nationwide may increase knowledge of clinical trials in which specific populations are enrolled or eligible. The GEC funding mentioned in Recommendation 2 requires that the continuing education programming provided by the GECs include information on clinical trials. The grantees are encouraged to educate health care providers about both local trails and national trials that are listed on the NIH website.
Stakeholders assert that persons under age 60 with dementia and their caregivers do not have access to benefits counseling, legal assistance, nutrition programs, transportation, in-home services, case management, ombudsman access, adult day care, and respite. Stakeholders recommend that these groups have access to these types of services.
Although the Task Force does not have the authority to expand the availability of these services to younger age groups, the group sees the potential to enhance awareness about the services to which these populations already have access. For example, persons under 65 with disabilities have access to home and community-based services (HCBS) through Medicaid and state-funded programs; the National Long-Term Care Ombudsman program serves all residents of nursing homes, board and care homes and assisted living facilities; the State Health Insurance Program serves adults of all ages who have Medicare due to disability. Legal services programs are available to people under age 65.
Stakeholders are concerned about screening and detection of Alzheimer's disease among specific populations. Stakeholders also say that practitioners do not receive reimbursement for provision of regular screening for early symptoms of dementia for younger persons and those with intellectual disabilities and recommend that practitioners' reimbursement should be adjusted to address this.
Addressing changes in reimbursement procedures for practitioners is beyond the scope of the Task Force. However, the development of assessment tools for people with intellectual disabilities is underway in the private sector. Task Force members were not aware of public or private funding for such tools.
Awareness among providers of services to persons with younger-onset dementia may be part of future provider outreach/education efforts. We do not yet know what screening tools are effective for people who may be experiencing younger-onset dementia. Identification of tools being developed externally would be a possible next step.
Stakeholders point out that another specific population that does not appear in the National Plan is people with co-morbidities involving both behavioral health conditions and dementia.
The Task Force appreciates this recommendation and is reaching out to relevant agencies such as Substance Abuse and Mental Health Services Administration (SAMHSA) and the National Institute of Mental Health (NIMH) to determine what additional work is needed. Many of HRSA's GECs are providing education and training in the management of multiple chronic disease conditions. The two most common chronic conditions they produce trainings on are dementia and diabetes. CGEP and GTPD grantees are specifically focusing on geropsychiatry, with an emphasis on ALL of an older adult's behavioral health needs, including dementia.
Stakeholders say that informal caregivers need to be integrated into planning and treatment for specific populations with dementia and that integrated, multi-disciplinary treatment should support family caregivers to the extent possible. Stakeholders also say that formal, paid caregivers need to be included in care planning for consistency in communication with health care providers and in follow through with care.
The Task Force noted that there is a need to integrate informal caregivers in planning for the broader population with dementia, but it is not clear what additional actions could be undertaken to target these specific populations with dementia. Work is underway to examine patterns of caregiving for Alzheimer's by African-Americans and Hispanics. It might be useful to examine the inclusion of informal caregivers, as appropriate, in the patient care plan in medical home models.
Stakeholders are concerned about the skill and availability of direct care workforce-caregivers.
The Task Force recognizes the need for an expanded and stable direct care workforce to support the needs of an aging population, including the specific populations addressed in this report. Training, adequate compensation, vigorous recruitment, support, and retention are areas to pursue, with a recognition of the unique needs of specific population and the necessity of building in communication between direct care staff, family, health care provider, and individual with dementia. CGEPs are already working in this area, but much work remains to be done.