National Plan to Address Alzheimer's Disease: 2016 Update. Strategy 3.D: Maintain the Dignity, Safety and Rights of People with Alzheimer's Disease

08/01/2016

Long-Term Care Ombudsman Regulations. Since 2012, ACL's Office of Long-Term Care Ombudsman Programs has provided, training, technical assistance, and federal regulations that help states' long-term care ombudsman (LTCO) programs to better meet the needs of individuals living with dementia in long-term care facilities. These activities include a National Ombudsman Resource Center (NORC) webinar titled: Involuntary Transfer/Discharge from Nursing Homes: Prevention, Advocacy, and Appeals. More than 700 people participated in and learned about inappropriate eviction and how to support individuals with dementia. Specialized training for LTCO also occurred during 2015 on advanced illness and health care decision making, bullying, person-centered complaint processes, and the new LTCO regulations related to the needs of people with dementia. In November 2015, ACL staff finalized Emergency Preparedness and Response -- Model Policies and Procedures for State Long-Term Care Ombudsman Programs and introduced these model policies and procedures to states.

In 2016, the Office of Long-Term Care Ombudsman Program plans training on emergency preparedness and response, with an emphasis on building coalitions to address emergency preparedness and lessons learned from pilot states (Colorado, Alaska, and Hawaii). In addition, the program will continue to work with states regarding the implementation of the LTCO rule, which becomes effective on July 1, 2016. ACL/AoA's Regional Support Centers are incorporating LTCO rule implementation by states into their 2016 annual reviews. Further training will occur on person-centered complaint processes, including for individuals living with dementia. ACL will continue its evaluation of the impact of LTCO programs and practices generally, including those that affect residents living with dementia and their families.

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Elder Abuse Prevention. ACL's National Center on Elder Abuse (NCEA) is dedicated to protecting all from the many forms of elder abuse, including those with dementia. NCEA has rebranded and updated its fact sheets, research briefs and training materials. Many of these materials are adaptable to assist families in crisis especially when their family member has lost the capacity to make their own decisions and may be especially susceptible to harm by others. For example, a research brief on dementia is available. NCEA also consults with Alzheimer's Association chapters on elder abuse issues.

Additionally, In 2015, NIA hosted a workshop titled, "Multiple Approaches to Understanding and Preventing Elder Abuse."

For more information, see:

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Model Approaches to Legal Assistance. The Model Approaches to Statewide Legal Assistance Systems (Model Approaches) grants help states develop and implement effective approaches for integrating low cost legal mechanisms into statewide legal/aging service delivery networks in order to enhance overall service delivery capacity. One of the notable achievements in 2015 was in Maine, which involved the launch of a financial institutions training initiative called Senior$afe. The grantee worked with representatives from the Maine Office of Securities, Maine Bureau of Professional and Financial Regulation, APS, the Maine Bankers Association, and the Maine Credit Union League. Maine's grantee also developed a streamlined reporting system for financial institutions who wish to make a report without a customer's consent. Nebraska established a partnership with the Nebraska Bankers' Association through the APS state office to address financial exploitation issues. Several bankers who participated in training intend to work with APS on elder abuse and financial exploitation issues.

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Volunteer Representative Payee Pilot Program. The Social Security Administration (SSA) and ACL collaborated in development and testing of protocols and materials to assist in the identification and training of individuals to serve as volunteer representative payees. The materials developed include a manual for program implementation, protocol guidance relating to communications between SSA and APS, and forms for referrals. SSA is in the process of finalizing online training modules and continues to build awareness of the program through listening sessions and presentations. Once the modules are complete, SSA will conduct a media campaign to build awareness of this volunteer program.

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National Partnership to Improve Dementia Care in Nursing Homes. The focus of the National Partnership to Improve Dementia Care in Nursing Homes continues to be on the improvement of comprehensive dementia care in nursing homes across the country. In September 2014, the National Partnership, a public-private coalition, established a new national goal of reducing the use of antipsychotic medications in long-stay nursing home residents by 25% by the end of 2015, and 30% by the end of 2016. The partnership continues to report progress quarterly, both nationally and regionally. The Partnership's larger mission is to enhance the use of non-pharmacologic approaches and person-centered dementia care practices. CMS is monitoring the reduction of antipsychotics, as well as the possible consequences, reviewing residents whose antipsychotics are withdrawn to make sure they do not suffer an unnecessary decline, monitoring antipsychotic measures for the calculations that CMS makes for each nursing home's rating on Nursing Home Compare; the agency's public reporting website.

For more information, see:

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HIPAA Privacy Rule and Alzheimer's and Related Dementias: A Resource List. With input from the non-federal members of the Advisory Council, as well as other experts, ASPE worked with colleagues in the HHS Office of Civil Rights (OCR) to develop a resource list for providers regarding consent, capacity, and decision making when treating individuals with dementia. Although the resource list does not specifically address dementia, due to constraints on OCR's ability to create guidance on specific diseases, it does provide links to material that would be relevant to providers when helping individuals and their families. There will be further refinement of this document, and it will be posted in its final form on the NAPA website.

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