BOSTON, July 14, 2013 /PRNewswire-USNewswire/ -- Four programs featured at the Alzheimer's Association International Conference® 2013 (AAIC® 2013) in Boston are making important efforts to improve early detection and diagnosis of Alzheimer's disease and increase the use of information and support services. Alzheimer's Association chapters are leaders and/or key players in these collaborative efforts with health systems, health care providers, universities and government agencies.
"Research shows that families and caregivers who learn about the course of Alzheimer's disease, and who take advantage of support and respite, often cope much better with the changes that come their way during the Alzheimer's disease process," said Beth Kallmyer, MSW, vice president of constituent services at the Alzheimer's Association.
According to the Alzheimer's Association 2013 Alzheimer's Disease Facts and Figures report, more than 5 million Americans are living with Alzheimer's disease. By 2050, the number of people with Alzheimer's may nearly triple. Yet too many people with Alzheimer's or another dementia are undiagnosed — as many as 50 percent, according to some studies.
"The number of people with Alzheimer's is projected to rise significantly as more and more people reach the age of greatest risk for developing the disease," said Maria Carrillo, Ph.D., Alzheimer's Association vice president of medical and scientific relations. "The huge number of undiagnosed cases reflects the pervasive fear about Alzheimer's, yet it also means that more people could benefit from support and information provided by the Alzheimer's Association. We hope these four programs can serve as models for implementation in other communities."
San Francisco Dementia Support Network Improves the Knowledge and Skills of Caregivers
The growing population of older adults in the San Francisco Bay Area is projected to increase the number of people with dementia in the region by 61 percent between 2000 and 2030. According the San Francisco Department of Aging and Adult Services' 2009 "Strategy for Excellence In Dementia Care," San Franciscans with Alzheimer's or another dementia are more vulnerable than the general population of seniors in the U.S. because they are more likely to be members of racial or ethnic minority groups, born in another country, speak different languages, live in poverty or live alone.
Elizabeth Edgerly, Ph.D., chief program officer of the Alzheimer's Association Northern California and Northern Nevada Chapter, added that support for people with dementia is often the responsibility of family caregivers, and that caregiving is time consuming, difficult and makes it very hard to participate in activities that protect and preserve the caregivers' own health and security.
San Francisco is the only city in the United States with a strategic plan for addressing dementia. The San Francisco Dementia Support Network is a partnership between the University of California, San Francisco; the San Francisco Department of Aging and Adult Services; the Alzheimer's Association Northern California and Northern Nevada Chapter; and Kaiser Permanente San Francisco (KPSF). The Dementia Support Network provides a multi-faceted approach to improve the knowledge and skills of caregivers during times of medical, functional or caregiving crises.
Four major efforts were undertaken:
- Improve capacity within KPSF to provide education and support to families and caregivers of members with Alzheimer's.
- Proactively connect the caregivers of KPSF members with Alzheimer's to community-based sources of education and support, including the Alzheimer's Association.
- Develop an electronic dementia care plan to improve the quality of care.
- Educate providers and staff at KPSF in best practices.
The program uses education services and a full-time social worker — a Dementia Care Expert. The six-month intervention aims to decrease preventable emergency room visits and/or hospitalizations and increase utilization of community-based services by caregivers. Importantly, the Dementia Care Expert had access to a pool of grants for respite care administered by the Alzheimer's Association Northern California and Northern Nevada Chapter, which allowed the family to purchase needed services (e.g., home health care). The University of California, San Francisco, collected data on project effectiveness through pre/post-test evaluations, and medical service utilization data from patient medical records.
At AAIC 2013, Edgerly reported that 105 patient and caregiver partners have been enrolled and participant demographics are highly diverse. Post-test evaluations are ongoing; a comprehensive data analysis will be conducted. One outcome of the project has been amending the electronic health records at Kaiser San Francisco to include caregiver information in the patient's Alzheimer's disease care plan.
"Our preliminary findings show improvement in caregiver experience and effectiveness, and positive feedback from education and support group surveys," Edgerly said. "The medical service utilization analysis is still pending, but our preliminary findings will be included in the AAIC 2013 presentation."
Alzheimer's Association Massachusetts/New Hampshire Chapter Collaborates with Major Health Insurer and Leading Medical Centers and to Improve Health and Reduce Costs
Building on past collaborations between the Alzheimer's Association and the Veterans Administration (VA), the Massachusetts/New Hampshire Chapter has launched two unique collaborations with a major insurance company and with three Boston teaching hospitals. Between 2007 and 2011, the VA and the Alzheimer's Association conducted the Partners in Dementia Care Study, which looked at veterans with dementia whose care was jointly coordinated by the VA and the Association. They found better health and psychological outcomes for caregivers and veterans, and lower rates of hospitalization and institutionalization.
"The two new partnerships feature direct referrals of people with dementia and their caregivers to the Alzheimer's Association for assessment, care recommendations, and education by a dedicated care consultant," said Nicole McGurin, MS, director of clinical services at the Alzheimer's Association Massachusetts/New Hampshire Chapter. "The care consultant then provides written feedback to the referral source for inclusion in the patient record."
McGurin described the two partnerships:
- The insurer partnership features referrals from nurse care managers and primary care physicians from Tufts Health Plan, the largest Medicare Preferred HMO plan in New England with 100,000 members, and will track psychosocial and health outcomes for the caregivers.
- A second program will feature referrals from physicians at three major medical centers in Boston and includes a research component to study health outcomes and cost savings. Beth Israel Deaconess Medical Center, Boston Medical Center, and the Veterans Administration Hospital are participating in the project.
Tufts Health Plan is partnering with the Massachusetts/New Hampshire chapter of the Alzheimer's Association to provide increased education and care coordination to members/caregivers regarding cognitive decline and dementia, increased access to services and community support, and training for the health plan's care management team. Tufts Health Plan has hired a special dementia care consultant to work and train at the Alzheimer's Association. The new program launched on June 1st.
At AAIC 2013, McGurin shared proposed new methods and tools for effectively operating and managing the direct referral systems. "At the completion of these projects, we hope to show that significant cost savings and better health outcomes for people with Alzheimer's and caregivers that receive care coordination from the Alzheimer's Association," said McGurin. "We encourage the development of similar partnerships, and we plan to share our program parameters and research findings to help others to be successful."
Alzheimer's Community Intervention in Missouri Increases Early Detection, Improves Knowledge and Reduces Burden
Alzheimer's disease is relatively common among older adults and yet many individuals with the disease never receive a formal diagnosis. And, when there is a diagnosis, it too often occurs after a health crisis or other emergency because symptoms of the disease were not recognized or treated earlier, according to James Galvin, M.D., M.P.H., professor of neurology, psychiatry, nursing, nutrition and population health at New York University School of Medicine.
At AAIC 2013, Galvin and colleagues reported on an innovative collaboration between New York University, the Missouri Department of Health and Senior Services, four Alzheimer's Association chapters in Missouri, and 10 Area Agencies on Aging (AAA). Known as Project Learn MORE (Missouri Outreach and Referral Expanded), it was a two-year study to increase detection of new cases of dementia and refer persons with dementia (PWDs) and family caregivers to Alzheimer Association chapters to receive supportive services and increase coping skills.
Missouri AAA caseworkers used the AD8 Dementia Screen to detect incident cases; it was incorporated into their in-home geriatric assessments. People with cognitive impairment were then referred to the Alzheimer's Association participate in the Project Learn MORE intervention that included a care consultation; 3,960 older adults were assessed during the study, and 317 people with cognitive decline were detected.
Care consultation services help Alzheimer's caregivers and other family members build a plan for the current and future care of their loved one. They receive one-to-one assistance to better understand Alzheimer's disease, manage the dementia symptoms and cope better with the changes brought on by the progression of the disease.
According to Galvin, who was lead investigator of the study, "The Area Agency on Aging staff reported the AD8 was easy to administer, useful to detect cognitive impairment and made it easier to discuss memory loss with clients."
Galvin reported that pre- and post-intervention surveys showed that Project Learn MORE:
- Reduced depression and increased knowledge in PWDs.
- Improved overall care confidence and knowledge of caregivers and reduced their feelings of burden.
- Increased the likelihood the PWD would seek a formal diagnosis and treatment.
"Our study demonstrated that community-based interventions, such as care consultations offered by the Alzheimer's Association, can significantly improve patient- and caregiver-centered outcomes," Galvin said.
Minnesota Collaborative Creates Two Tools for Doctors to Encourage Alzheimer's Diagnosis
One barrier to early detection and treatment of Alzheimer's is lack of dementia education and training for physicians. "Some doctors mistakenly believe that significant memory loss is a normal part of aging, a diagnosis of Alzheimer's cannot be made until autopsy or available treatments and support services have no benefit," according to Terry Barclay, Ph.D., director of neuropsychology at HealthPartners and Regions Hospital in St. Paul, Minn. "They may be reluctant to investigate memory concerns because the evaluation and management of dementia is perceived to be complex, time consuming and burdensome."
To help change this situation, a state-wide collaborative was developed in Minnesota called ACT on Alzheimer's©. ACT on Alzheimer's was charged with transforming the state's medical and long-term care systems and communities by promoting early diagnosis and more comprehensive support of individuals with dementia and their families. The group includes medical, academic, community, government, business and nonprofit stakeholders, including the Alzheimer's Association Minnesota-North Dakota Chapter.
Looking first at overcoming obstacles in primary care, ACT on Alzheimer's created two evidence-based tools designed to demystify and simplify dementia management in primary care:
- The first tool, called a "dementia practice parameter," provides doctors with a streamlined "how-to guide" to assist their decision-making process in three areas: cognitive evaluation, dementia work-up/diagnosis and disease management. The guidelines incorporate best practice recommendations and concisely present the steps involved in efficient and appropriate dementia care.
- The second tool helps physicians take full advantage of their electronic medical record system to further simplify and automate the evaluation, diagnosis, and management of people with dementia. The Decision Support Tool provides an easy way for health care systems, clinics and hospitals to integrate dementia care by helping providers quickly access answers to clinical questions, administer cognitive evaluation tools, place orders for diagnostic tests, and connect patients and families to helpful resources, such as the local Alzheimer's Association chapter.
"Two Minnesota-based health systems have started using the tools, and two more are currently considering them," said Barclay, who is chair of the Medical and Scientific Advisory Council for the Alzheimer's Association Minnesota and North Dakota Chapter and is a dementia consultant for the Minnesota Department of Human Services.
The Alzheimer's Association International Conference (AAIC) is the world's largest conference of its kind. AAIC brings together researchers from around the world to report and discuss groundbreaking research and issues surrounding the cause, diagnosis, treatment and prevention of Alzheimer's disease and related disorders. As a part of the Alzheimer's Association's research program, AAIC serves as a catalyst for generating new knowledge about dementia and fostering a vital, collegial research community.
About the Alzheimer's Association
The Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's disease care, support and research. Our mission is to eliminate Alzheimer's through the advancement of research; provide and enhance care and support for all affected; and reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. Visit www.alz.org or call 800-272-3900.
SOURCE Alzheimer's Association