The Retirement Research Foundation Funds UB Institute for Person-Centered Care
The Retirement Research Foundation funds UB Institute for Person-Centered Care for a national survey on the needs of people with dementia–from their perspective.
The Institute for Person-Centered Care in partnership with the Dementia Action Alliance has been awarded a grant from the Retirement Research Foundation to give voice to people with dementia at a policy level. The grant will support a national Delphi Survey of people with dementia and their care partners. The priorities identified by this survey will be presented to policy makers in July this year. For more information click here.
Background:
In 2011, President Obama signed the National Alzheimer’s Project Act (NAPA) into law. Part of the law called for the creation of an Advisory Council comprised of representatives of federal agencies involved in aging issues and a dozen individuals appointed by the Secretary of the U.S. Department of Health and Human Services (DHHS). The Advisory Council members were tasked with developing recommendations for priorities and needed actions for preparing the U.S. to meet the population’s needs surrounding Alzheimer’s disease and related dementias (dementia). The National Plan containing the national priorities and recommendations was released in May 2012 with revised recommendations subsequently released in June 2013.
Although NAPA is applauded as an important initiative to develop a national framework for dementia, it is currently unbalanced in its focus on cure and treatment aspects of Alzheimer’s disease, with insufficient focus on care-related needs of persons living with the condition.
Issues with current initiative:
· Three of the five goals that form the foundation of the National Plan are oriented on aspects of care [e.g., enhance care quality and efficiency, expand supports for people with Alzheimer’s disease and their families, and enhance public awareness and engagement] while the majority of the Plan’s focus and resources are directed to cure and treatment-related efforts.
· The Plan focuses on Alzheimer’s disease, rather than the broader category of dementia. (it is important to note that the U.S is the only country in the world whose National Plan focuses on Alzheimer’s disease rather than the broader focus of dementia)
· The orientation to person-centered care is missing from the National Plan.
While it is critically important to find a cure and treatment for Alzheimer’s and related dementias, the importance of meeting care needs of people living with dementia cannot be diminished. Using the term “Alzheimer’s” to encompass other types of dementia effectively negates any intended message that the Plan includes a broader focus. This leaves people living with other types of dementias (such as vascular dementia or Lewy Body dementia amongst others) feeling that their needs are not being addressed by the National Plan.
Additionally, person-centered care is the gold standard of health care and forms the foundation for the context of care. The Affordable Care Act mandates a person-centered system of long-term services and supports. The lack of person-centered context in the National Plan not only suggests limited input from persons living with dementia and their care partners, but it also reflects the omission of the gold standard of care in the recommendations being developed.
Project goals:
There is a timely need for a national grassroots advocacy initiative (network) to connect and coalesce the voices of people living with dementia and their care partners and other advocates. The purpose of such a network would be to inform the National Alzheimer’s Project Act (NAPA) Advisory Council members, policymakers, and other strategic stakeholders about the priorities and preferences of people living with dementia. The proposed aims of this project are oriented to fulfill that need.
The proposed project is structured as a 7-month effort (January to July 2014), aimed at informing the development of an advocacy network to give voice to people living with dementia, and their care partners and other advocates. The project will also identify and prioritize the preferences and issues faced by people living with dementia and their care partners, in order to influence the progress of the NAPA Plan and consequently balance the distribution of resources to reflect the need for PERSON-CENTERED CARE in a comprehensive National Plan. The four aims of this project build on each other, as follows:
1. Increase awareness and invite engagement of people living with dementia, their care partners and other advocates, and strategic stakeholder organizations about the imbalance of “cure” and “treatment,” components over “care” in the National Plan.
2. Gather feedback through online surveys of people living with dementia, their care partners and other advocates, and key stakeholders to collect recommendations on their dementia needs, preferences, and priorities.
3. Disseminate the written results of Aim 2 to Department of Health and Human Services (DHSS) Secretary Kathleen Sebelius, the NAPA Advisory Council members, and other key policymakers.
4. Develop an infrastructure to connect and coalesce people with dementia, their care partners, and other advocates in a national network (the Dementia Action Alliance). The purpose of the network is to gather the voices of the people to inform policymakers of their priorities, needs, and interests, so they can be included in state and federal policymaking and planning efforts.
The team:
Davina Porock, PhD, Professor, UB School of Nursing and Executive Director of the UB Institute for Person-Centered Care
Louanne Bakk, PhD, Assistant Professor and Director of the Innovative Aging Policy and Practice, UB School of Social Work
Karen Love, Founder, Consumer Consortium Advancing Person-Centered Living (CCAL); President, Center for Excellence in Assisted Living (CEAL)
Jacqueline Pinkowitz, Chair, Consumer Consortium Advancing Centered Living (CCAL)
Sonya Barsness, Sonya Barsness Consulting LLC
Funding:
The Retirement Research Foundation, based in Chicago, is devoted exclusively to improving the quality of life for our nation’s older adults, especially those who are vulnerable due to advanced age, economic disadvantage, or disparity related to race and ethnicity. Endowed in 1978 by the late John D. MacArthur, the Foundation has since awarded grants totaling nearly $200 million.
