Virginia Dementia State Plan draft


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After input from a state-wide series of public listening sessions and from dementia researchers, the Alzheimer’s Disease and Related Disorders Commission has drafted the Dementia State Plan: Virginia’s Response to the Needs of Individuals with Dementia and their Caregivers. The Commission is now welcoming public comment, until October 19th, through or by emailing

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Virginia Dementia State Plan draft

  1. 1. Alzheimer’s Disease and Related Disorders Commission Virginia’s Response to the Needs of Individuals with Dementia and their Caregivers To submit public comment, please e-mail or visit on cover courtesy of Ray Moore and the Mountain Empire Older Citizens, Inc.)From top left, clockwise:VINADA BRICKEY AND HUSBAND, MACK BRICKEY, WEBER CITY —“I am grateful for each day with my wife and would not trade thisexperience for anything. There could be no greater love than my love for her.” —Mack BrickeyMARY SCHAUER AND MOTHER, INA DUFF, PENNINGTON GAP —“My mother is my best friend.” —Mary SchauerALBERTA MITCHELL AND MOTHER, ILLINOISE MITCHELL, BIG STONE GAP — “This experience has afforded me an opportunity to dofor my mother and give back to her for all she has done for me in my life. It makes me feel so blessed to have her for a mother, she is soprecious to me!” —Alberta Mitchell
  2. 2. Overview of Goals, 1 GOAL I: Coordinate Quality Dementia Services in the Commonwealth to Ensure Dementia CapabilityWhat is Alzheimers Disease? A: Create a dementia services coordinator. Dementia, 2 B: Expand availability and access of dementia capable Medicaid and other state-level services. Alzheimer’s Disease, 2 C: Create a statewide network of memory disorders clinics to assess and treat persons with Symptoms, 2 dementia. Diagnosis, 3 Causes, 4 GOAL II: Use Dementia Related Data to Improve Public Health Outcomes A: Collect and monitor data related to dementia’s impact on the people of the Commonwealth. Risk Factors, 5 Treatment , 7 B: Remove barriers for community integration for persons with dementia. C: Collaborate with related public health efforts to encourage risk-reduction strategies.Recommendations GOAL III: Increase Awareness and Create Dementia Specific Training I. Coordinate Quality Dementia Services in the Commonwealth to A: Provide standardized dementia specific training to individuals in the health-related field and require demonstrated competency. Ensure Dementia Capability, 8 II. Use Dementia Related Data to Improve Public Health, 10 B: Provide dementia specific training to law enforcement, financial services personnel, and the legal profession. III. Increase Awareness and Create Dementia Specific Training C: Link caregivers, family members and individuals with dementia to information about dementia Outcomes, 12 services. IV. Provide Access to Quality Coordinated Care for Individuals with Dementia in the Most Integrated Setting, 14 GOAL IV: Provide Access to Quality Coordinated Care for Individuals with V. Expand Resources for Dementia Specific Research, 15 Dementia in the Most Integrated Setting A: Advocate for integrated systems of care coordination that effectively support improved health outcomes for individuals with Alzheimer’s and Related Dementias and their families andAppendices loved ones. How We Got Here, 18 B: Explore tax incentives for family caregiving, respite care, long term care insurance. purchases, locator devices, and additional long term care services. Statistical Sheet, 19 Resources, 20 C: Advocate for accessible transportation systems. Glossary, 22 GOAL V: Expand Resources for Dementia Specific Research A: Increase funding for the Alzheimer’s and Related Diseases Research Award Fund. B: Provide support to researchers across the Commonwealth through data sources and networking opportunities. 2 C: Promote research participation in Virginia. 1
  3. 3. DEMENTIA: Definition and Specific Types Individuals progress from mild Alzheimer’s dis- ease to moderate and severe disease at different rates. As the disease progresses, the individual’s cogni-Dementia is caused by various diseases and conditions that result in damaged brain cells or connections between brain tive and functional abilities decline. In advanced Alzhei-cells. When making a diagnosis of dementia, physicians commonly refer to the criteria given in the Diagnostic and Statisti-cal Manual of Mental Disorders, Fourth Edition (DSM-IV).(1) To meet DSM-IV criteria for dementia, the following are re- mer’s, people need help with basic activities of daily liv-quired: ing, such as bathing, dressing, using the bathroom and eating. Those in the final stages of the disease lose their Symptoms must include decline in memory and in at least one of the following cognitive abilities: ability to communicate, fail to recognize loved ones and 1. Ability to generate coherent speech or understand spoken or written language; become bed-bound and reliant on around-the-clock 2. Ability to recognize or identify objects, assuming intact sensory function; care. The inability in late-stage Alzheimer’s disease to 3. Ability to execute motor activities, assuming intact motor abilities, sensory function and comprehension of the required task; and move around can make a person more vulnerable to 4. Ability to think abstractly, make sound judgments and plan and carry out complex tasks. infections, including pneumonia (infection of the lungs). Alzheimer’s disease is ultimately fatal, and Alzheimer- The decline in cognitive abilities must be severe enough to interfere with daily life. related pneumonia is often the cause.It is important for a physician to determine the cause of memory loss or other dementia-like symptoms. Some symptomscan be reversed if they are caused by treatable conditions, such as depression, delirium, drug interaction, thyroid prob- Although families generally prefer to keep the personlems, excess use of alcohol or certain vitamin deficiencies. with Alzheimer’s at home as long as possible, most peo-When dementia is not caused by treatable conditions, a physician must conduct further assessments to identify the form of ple with the disease eventually move into a nursingdementia that is causing symptoms. Different types of dementia are associated with distinct symptom patterns and distin- home or another residence where around-the-clock pro-guishing microscopic brain abnormalities. fessional care is available.Although Alzheimer’s disease is the most common type of dementia, increasing evidence from long-term observationaland autopsy studies indicates that many people with dementia have brain abnormalities associated with more than onetype of dementia.ALZHEIMER’S Disease DIAGNOSIS of Alzheimer’s Disease A diagnosis of Alzheimer’s disease is most commonly made by an individual’s primary care physician. The physician ob-Alzheimer’s disease was first identified more than 100 years ago, but research into its symptoms, causes, risk factors and tains a medical and family history, including psychiatric history and history of cognitive and behavioral changes. Ideally, atreatment has only gained momentum in the last 30 years. While research has revealed a great deal about Alzheimer’s, family member or other individual close to the patient is available to provide input. The physician also conducts cognitivewith the exception of certain inherited forms of the disease, the cause or causes of Alzheimer’s disease remain unknown. tests and physical and neurologic examinations. In addition, the patient may undergo magnetic resonance imaging (MRI) scans to identify brain changes that have occurred so the physician can rule out other possible causes of cognitive decline.SYMPTOMS of Alzheimer’s DiseaseAlzheimer’s disease can affect different people in different ways, but the most common symptom pattern begins with grad-ually worsening difficulty in remembering new information. This is because disruption of brain cell function usually be-gins in regions involved in forming new memories. As damage spreads, individuals experience other difficulties. Thefollowing are warning signs of Alzheimer’s: 3 Taken from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2. Taken from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2. 3
  4. 4. CAUSES of Alzheimer’s Disease The greatest risk factor for Alzheimer’s disease is advancing age, but Alzheimer’s is not a normal part of aging. Most Americans with Alzheimer’s disease are aged 65 or older. These individuals are said to have late-onset Alzhei- mer’s disease. However, people younger than age 65 can also develop the disease. When Alzheimer’s occurs in a per-The cause or causes of Alzheimer’s by the receiving neuron. The brain show dramatic shrinkage from cell son younger than 65 who does not have familial Alzheimer’s disease, it is referred to as “younger-onset” or “early-onset”disease are not yet known. However, contains 100 trillion synapses. They loss and widespread debris from Alzheimer’s. Advancing age is not the only risk factor for Alzheimer’s disease. The following sections describe other promi-most experts agree that Alzheimer’s, allow signals to travel rapidly and dead and dying neurons. nent risk other common chronic diseases, constantly through the brain’s circuits,probably develops as a result of multi- creating the cellular basis of memo- One known cause of Alzheimer’s isple factors rather than a single cause. ries, thoughts, sensations, emotions, genetic mutation. A small percentageAmong the brain changes believed to movements and skills. of Alzheimer’s disease cases, proba- bly less than 1 percent, are caused by Family Family history is another risk factor for Alz- heimer’s disease. Individuals with a parent, e3 and e4) of the APOE gene, which pro- vides the blueprint for a protein that carriescontribute to the development of Alz- In Alzheimer’s disease, information rare genetic mutations. These muta- brother or sister with Alzheimer’s are more cholesterol in the bloodstream.heimer’s are the accumulation of the transfer at synapses begins to fail, the tions involve the gene for the amyloid History likely to develop the disease than those who do not have a first-degree relative with Alz- Everyone inherits one form of the APOEprotein beta-amyloid outside nerve number of synapses declines and precursor protein on chromosome 21,cells (neurons) in the brain and the neurons eventually die. The accumu- the gene for the presenilin 1 protein heimer’s. Those with more than one first- gene from each parent. Those who inheritaccumulation of the protein tau inside lation of beta-amyloid outside these on chromosome 14 and the gene for degree relative with Alzheimer’s are at even one APOE-e4 gene have increased risk ofneurons. A healthy adult brain has synapses is believed to interfere with the presenilin 2 protein on chromo- higher risk of developing the disease. When developing Alzheimer’s disease and of devel-100 billion neurons, each with long, neuron-to-neuron communication and some 1. Inheriting any of these genet- diseases run in families, heredity (genetics), oping it at an earlier age than those who in-branching extensions. These long, contribute to cell death. Inside the ic mutations guarantees that an indi- environmental factors or both may play a herit the e2 or e3 forms of the APOE gene.branching extensions enable individu- neuron, abnormally high levels of tau vidual will develop Alzheimer’s dis- role. Those who inherit two APOE-e4 genes haveal neurons to form specialized con- form tangles that block the transport ease. In such individuals, the disease an even higher risk. However, inheriting onenections with other neurons. At these of nutrients and other essential mole- tends to develop before age 65, A genetic factor in late-onset Alzheimer’s or two copies of the gene does not guaranteeconnections, called synapses, infor- cules throughout the cell. This is also sometimes in individuals as young as disease is Apolipoprotein E-e4 (APOE-e4). that the individual will develop Alzheimer’s.mation flows in tiny chemical pulses believed to contribute to cell death. 30. These people are said to have APOE-e4 is one of three common forms (e2,released by one neuron and detected Brains with advanced Alzheimer’s “familial” Alzheimer’s disease. Mild Another established risk factor for Alzhei- mated that as many as 15 percent of these mer’s disease is MCI, a condition in which a individuals progress from MCI to dementia person has problems with memory, language each year. From this estimate, nearly half of Cognitive or another essential cognitive ability that are all people who have visited a physician about severe enough to be noticeable to others and MCI symptoms will develop dementia in Impairment show up on cognitive tests, but not severe enough to interfere with daily life. Studies three or four years. It is unclear why some people with MCI develop dementia while oth- (MCI) indicate that as many as 10 to 20 percent of people aged 65 and older have MCI. People ers do not. MCI may in some cases repre- sent a transitional state between normal ag- whose MCI symptoms cause them enough ing and the earliest symptoms of Alzhei- concern to visit a physician appear to have a mer’s. higher risk of developing dementia. It’s esti- 4 Taken from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2. Taken from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2. 5
  5. 5. Cardiovascular A growing body of evidence suggests that the health of the brain is closely sociated with a higher risk of develop- ing Alzheimer’s and other dementias. No treatment is available to slow or stop the deterioration of brain cells in Alzheimer’s dis- Aging and the Alzheimer’s Associa- tion convened three workgroups to ex- linked to the overall health of the heart Unlike genetic risk factors, many of the- ease. The U.S. Food and Drug Administra- plore the need for new diagnostic criteriaDisease Risk and blood vessels. The brain is nour- ished by one of the body’s richest net- se cardiovascular disease risk factors are modifiable — that is, they can be tion has approved five drugs that temporarily that better reflect the full continuum of the slow worsening of symptoms for about six to disease. In 2010, these workgroups pro-Factors works of blood vessels. A healthy heart helps ensure that enough blood is changed to decrease the likelihood of developing cardiovascular disease and, 12 months. They are effective for only about half of the individuals who take them. How- posed recommendations to update the diag- nostic criteria for Alzheimer’s dementia and pumped through these blood vessels, possibly, the cognitive decline associat- ever, researchers around the world are stud- MCI. The workgroup recommendations also and healthy blood vessels help ensure ed with Alzheimer’s and other forms of ying numerous treatment strategies that may include criteria for “preclinical Alzheimer’s that the brain is supplied with the oxy- dementia. More limited data suggest have the potential to change the course of disease,” a new diagnostic category repre- gen- and nutrient-rich blood it needs to that other modifiable factors, such as the disease. senting the earliest changes that occur even function normally. Some data indicate remaining mentally active and consum- before symptoms such as memory loss or that cardiovascular disease risk factors, ing a diet low in saturated fats and rich Approximately 75 to 100 experimental thera- the symptoms associated with MCI. All of the such as high cholesterol (especially in in vegetables, may support brain pies aimed at slowing or stopping the pro- midlife), Type 2 diabetes, high blood health. recommendations incorporate the use of bi- gression of Alzheimer’s are in clinical testing omarkers for diagnosis. Among the bi- pressure (especially in midlife), physical in human volunteers. Researchers believe omarkers being considered are brain vol- inactivity, smoking and obesity, are as- that treatments to slow or stop the progres- ume, level of glucose metabolism in the sion of Alzheimer’s disease and preserve brain, presence of beta-amyloid in the brain brain function will be most effective when and levels of beta-amyloid and tau in cere- administered early in the course of the dis- brospinal fluid. These recommendationsHead Trauma Moderate and severe head trauma, head injury and traumatic brain injury individuals experiencing mild head inju- ry or any number of common mishaps ease. The brain changes in individuals with Alzheimer’s are thought to begin 10 years or would currently be used only in research set- tings. Their accuracy must be confirmed in are associated with an increased risk of such as bumping one’s head while exit-and Traumatic Alzheimer’s disease and dementia. If the head injury results in loss of con- ing a car. Groups that experience re- peated head injuries, such as boxers, more before such symptoms as memory loss appear, and this may be the period during research studies before they can be used in clinical practice, such as during a visit to a which future Alzheimer drugs will first be giv- physician.Brain Injury sciousness or post-traumatic amnesia lasting more than 30 minutes, the injury football players and combat veterans, may be at increased risk of dementia, en. Much research in recent years has fo- cused on identifying biomarkers that will aid Despite the current lack of disease-modifying is considered moderate; if either of the- late-life cognitive impairment and evi- in early detection and tell physicians which therapies, studies have consistently shown se lasts more than 24 hours, the injury dence of tau tangles (a hallmark of Alz- is considered severe. Data indicate that heimer’s) at autopsy. Some studies patients should receive treatment during the- that active medical management of Alzhei- moderate head injuries are associated suggest that APOE-e4 carriers who se very beginning stages of Alzheimer’s. (A mer’s and other dementias can significantly with twice the risk of developing Alzhei- experience moderate or severe head biomarker is a naturally occurring, measura- improve quality of life through all stages of mer’s compared with no head injuries, injury are at increased risk of develop- ble substance or condition that reliably indi- the disease for individuals with Alzheimer’s and severe head injuries are associat- ing Alzheimer’s compared with APOE- cates the presence or absence of disease or and their caregivers. Active management ed with 4.5 times the risk. These in- e4 carriers who do not have a history of the risk of later developing a disease; for ex- includes (1) appropriate use of available creased risks have not been shown for moderate or severe head injury. ample, blood glucose levels are a biomarker treatment options, (2) effective integration of of diabetes, and cholesterol levels are a bi- coexisting conditions into the treatment plan, omarker of cardiovascular disease risk.) (3) coordination of care among physicians, other healthcare professionals and lay care- To aid in early detection and in diagnosis of givers and (4) use of activity and support Alzheimer’s disease from its earliest signs to groups, adult day care programs and sup- its eventual impact on mental and physical portive services such as counseling. function, in 2009 the National Institute on 5 7 Taken from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2. Taken from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
  6. 6. GOAL I: The system of services provided by the Commonwealth is not designed to serve persons with dementia. Each department within the Health and Human Resources e. The DSC will oversee and promote services for all stages and types of de- mentia including younger on-set. created, slowly over time, their own programs for long-term care including demen-Coordinate Quality tia related services and supports, but without any clear oversight or coordination of f. The DSC will ensure that the Aging and Disability Resource Centers are de- mentia capable. policy goals and implementation. Virginia needs to make a comprehensive reviewDementia Services of these programs in order to ensure better services and more efficient use of state B. Expand availability and access of dementia capable Medicaid and other state-level funds. agencies 1. Request an increase in respite services for people with dementiain the The Dementia Services Coordinator described in this plan would review the exist- ing programs and work with the agencies to create a dementia capable service 2. Revise the current definition, eligibility and service requirements for the provision of respite to make the program more flexible.Commonwealth delivery system. The coordinator would identify gaps in Medicaid (and other state services) and reduce duplication of existing services. 3. Expand the accessibility and availability for PACE (Program of the All-inclusive Care for the Elderly) and adult day health care, the Elderly or Disabled Consumer Directionto Ensure Dementia In order to get the maximum benefit from a better coordinated system, Virginians will need access to early detection and treatment of dementia. Memory Disorders (EDCD) waiver, and hospice programs. 4. Expand the Medicaid waiver specific to Alzheimer’s disease and related dementias toCapability Clinics that use an interdisciplinary team approach to assess and treat persons with dementia would provide the citizens of the Commonwealth with screening ser- include other home and community based services. vices and treatment. Early identification and aggressive treatment of Alzheimer’s 5. Explore changes needed to ensure Medicaid eligibility for early onset dementia. and other related dementias offer the greatest opportunity to decrease cost and 6. Increase the payment rate of the Auxiliary Grant to cover the actual cost of care in an progression of the disease. assisted living facility. 7. Expand the use of Virginia’s Long-Term Care Partnership Insurance Program. A. Create a dementia services coordinator 8. Increase funding for Home and Community Based Services. 1. Create a position and obtain specific funding to hire a full time Demen- 9. Review the overlapping requirements for the licensing of residential facilities, assist- tia Services Coordinator (DSC) to coordinate the services provided to ed living facilities, and skilled nursing facilities to further clarify the different levels of persons with Alzheimer’s disease and Related Dementia working in services. conjunction with the Alzheimer’s Commission. a. The job responsibilities should include policy, research and co- C. Create a statewide network of memory disorders clinics to assess and treat persons ordination of services. with dementia b. The DSC should disseminate information on services and relat- 1. Create a network of memory disorder clinics that use an interdisciplinary team ap- ed activities for individuals with Alzheimer’s disease and related proach to assess and treat persons with dementia. dementias to the medical and healthcare community, academic community, primary family caregivers, advocacy associations and general public. c. The DSC will establish a strategy to link and coordinate ser- vices and activities of State agencies, other service providers, advocacy groups and other entities throughout the State such as emergency personnel, police, universities and attorneys and other staff associated with the legal system. This could include partnerships with the Alzheimer’s Association, the Area Agen- cies on Aging, and other groups invested in dementia re- search and care. d. The DSC will coordinate and provide support for Com- 6 mission activities. 9
  7. 7. GOAL II: Public health data collection is essential to understand the scope and g. The availability of assessment services for Alzheimer’s and dementia. extent of dementia impact on Virginians. State agencies do collect some general h. The number and location of Virginians who are currently providing care in their home to a family member with Alzheimer’s disease and dementia.Use Dementia information related to specific programs, such as, APS, Adult Services, Medicaid services, and Mental Health services, but the information is not aggregated or sort- i. The cost of caring for a person with dementia. ed by the Commonwealth to inform state policy decisions related to dementia care. B. Remove barriers for community integration for persons with dementiaRelated Data to Currently the Commonwealth has no effective statewide tool to regularly gather and 1. With appropriate stakeholders, develop, collect and implement a protocol of appro- analyze information on dementia disease diagnoses, risk factors or disease pat- priate placement options based on the stages of Alzheimer’s and dementia relatedImprove Public terns. This lack of data leads to a fragmented service delivery system that does not diseases, and available community resources. meet the needs of persons with Alzheimer’s disease. C. Collaborate with related public health efforts to encourage risk-reduction strategiesHealth Outcomes 1. Use the Behavioral Risk Factor Surveillance System (BRFSS) to collect health out- The Dementia Services Coordinator described in this plan would review existing comes data for persons with Alzheimer’s disease and dementia in Virginia. data and create a system to incorporate that data into a meaningful tool to inform 2. Collaborate with related public health efforts (e.g. diet, exercise, co-morbid condi- state policy makers. A careful study of the data would allow the Commonwealth to tions, etc.) to encourage risk-reduction strategies. identify barriers to serving more people with dementia in their homes and ultimately make recommendations that will reduce the reliance on expensive nursing home care thus allowing Virginia to meet its community integration goals on the Olmstead v. L.C. court decision. Additionally, the data can be used to target risk reduction strategies and reduce the overall cost of dementia on Virginia. A. Collect and monitor data related to dementia’s impact on the people of the Commonwealth. 1. Require the DSC to develop, implement and coordinate a statewide data collection system (including Behavioral Risk Factor Surveillance System data) through the AlzPossible website ( The website could provide a clearinghouse of links to the state agen- cies or groups with relevant, up-to-date, and available data on demen- tia. 2. The DSC should collect and monitor data with the following themes in mind: a. The prevalence of dementia related diseases across the Com- monwealth. b. The prevalence of dementia related diseases by county. c. The prevalence of early on-set dementia related diseases across the Commonwealth. d. The prevalence of inpatient geriatric psychiatry beds. e. The availability of geriatric services and specialists. f. The availability of dementia related services and sup- ports. 7 11
  8. 8. GOAL III: Many families can anticipate a 20 year progression when faced with a dementia di- i. Develop, collect and implement an evidence-based training curriculum agnosis, encountering a wide variety of care providers along the way. Despite the and implementation strategies for Long Term Care facilities and home and community based providers.Increase current demographic predictions, there is a startling dearth of training for care provid- ers across all disciplines, professional and licensure levels regarding detection, diag- j. Require mandatory dementia-specific training for emergency room staff includ- ing nurses, physicians and related services technicians such as radiology.Awareness and nosis, care, treatment and general best practices in dementia. The dementia knowledge gap leaves patients and families at risk due the poorly informed and un- k. Increase training for Department of Social Services adult protective services ethical practices of an unskilled workforce. Families are left to fend for themselves. workers on Alzheimer’s/dementia.Create Dementia Dementia specific training is essential to ensure quality care across the continuum of l. Incorporate evidence-based dementia practices into all existing training offered through the Department of Social Services, the Department for the Aging, theSpecific Training care. Coordination and expansion of existing training models is key to ensuring a dementia ready workforce. Department for Behavioral Health and Disability Services, the Department of Rehabilitation Services, and their contractors A. Provide standardized dementia specific training to individuals in the health 2. Develop, collect and implement a portable certification program for para- -related field and require demonstrated competency professional direct caregivers with standardized content designed to enhance their B. Provide dementia specific training to professional law enforcement, finan- understanding of memory impairment and their performance in caring for individuals cial services personnel, and the legal profession with Alzheimer’s and related dementias. 1. Develop, collect and implement training on dementia related disorders C. Link caregivers, family members and individuals with dementia to information about for various stakeholders. dementia services. a. Continue to develop relationships and implement training with state 1. Link family and informal caregivers to information and education about dementia and local law enforcement and emergency personnel. and the caregiving process (through coordination with the Alzheimers Association, b. Continue work with law enforcement to ensure a coordinated proto- Area Agencies on Aging, and similar organizations and agencies). This should pro- col for swift and appropriate action upon report of a missing adult vide the caregiver information about dementia as well as information on how care- with dementia. givers can stay healthy, organize the various legal issues associated with a loved c. Develop, collect and implement dementia specific training for finan- one’s dementia diagnosis (such as Advanced Medical Directives, Power of Attor- cial services personnel. neys, etc.), and how caregivers can locate and make use of resources for respite d. Develop, collect and implement dementia specific training for judg- care services. This could be accomplished through a combination of efforts, includ- es, magistrates, prosecutors, and general practice attorneys. ing use of the AlzPossible website. e. Develop, collect and implement dementia specific training for physi- 2. Develop, collect and implement a strategy to reach out to rural communities and cians and encourage practical experience in geriatrics for medical racial and ethnic minorities, including African-Americans and Hispanics, suffering students. from dementias and their respective caregivers. This could include a combined ef- f. Develop, collect and implement dementia specific training for profes- fort with the Alzheimer’s Association to increase the availability and use of educa- sionals working in the health professions, such as gerontologists, tion materials tailored to these groups. physical therapists, occupational therapists, nurses, rehabilitation 3. With appropriate stakeholders, develop, collect and implement evidence-based pro- counselors, etc. tocol for appropriate interaction with individuals with Alzheimer’s and related de- g. Emphasize the unique role and knowledge of the informal or family mentias and their family and loved ones. caregiver and encourage physicians to utilize their expertise. h. Develop, collect and implement evidence-based training curricu- lum and implementation strategy for the Department of Be- havioral Health and Developmental Services and the Com- 8 munity Services Boards. 13
  9. 9. GOAL IV: Currently 80-85% of family care is provided by family members. It is safe to say that our current health care system is dependent on family care. While caregivers ex- GOAL V: Key to Virginia’s response to dementia will be continued support for research aimed at disease modification, prevention, and elimination, as well as the transla- press commitment and devotion to their loved ones, the emotional and physical tional, evidence-based, and behavioral research developments that improve theProvide Access to strain can be devastating. It is well documented that the person with dementia often Expand Resources quality of life and care for those impacted by dementia. Through a combination of part- outlives their caregiver as the caregiver’s physical and emotional needs seat a back nerships spanning the scientific, academic, public, and private sector communities,Quality seat to daily demands. In addition, caregiving often takes a significant financial toll for Dementia Virginia must encourage research participation at all levels of service delivery while on families as well as industry due to lost wages, poor work performance, and ab- also facilitating information sharing and networking opportunities for researchers.Coordinated Care senteeism. Adequate support for families can preserve caregiver physical, emotion- Specific With increased funding for the Alzheimer’s and Related Disease Research Award al, and financial health, improve care of persons with dementia, postpone costly resi- Fund and support for the progression of evidence-informed practices to evidence-for Individuals with dential placement, and maintain caregivers as valuable contributors to the workforce. Translational based practices, Virginia will ensure that it is prepared to meet the research needs of its residents.Dementia in the The Commonwealth must support, fund, and expand availability of professional care coordination to help families navigate our complex eldercare system. In order to sur- Research and A. Increase funding for the Alzheimer’s and Related Diseases Research Award Fund.Most Integrated vive, families need dementia friendly solutions for their safety, services, and behav- ioral concerns, including: assessment and diagnosis, counseling and support ser- Evidence-Based 1. Increase funding for the Alzheimer’s and Related Diseases Research Award Fund.Setting vices, care management, respite care, assistive technologies and home modifica- tion, transportation, and payment options including long term care insurance. Practices a. Restore and expand funding to increase investment in prevention, modification, cures, and best practices for dementia. b. Disseminate research findings, especially translational research A. Advocate for integrated systems of care coordination that effectively sup- findings, on port improved health outcomes for individuals with Alzheimer’s and Relat- B. Provide support to researchers across the Commonwealth through data ed Dementias and their families and loved ones. sources and networking opportunities. 1. With the appropriate stakeholders, support a pilot demonstration project 1. Provide networking opportunity for researchers in Virginia. to improve transitional care and address the problem lack of placement a. Disseminate funding opportunities. and facility discharge for residents exhibiting disruptive behavior. b. Use AlzPossible as a forum to link researchers interested in B. Explore tax incentives for family caregiving, respite care, long term care Alzheimer’s disease research. insurance purchases, locator devices, and additional long term care ser- c. Use a webinar, survey or live format to assess the needs of vices. Alzheimer’s disease research in Virginia and explore options 1. Offer tax credits for families for the purchase of locator devices. to further support participant recruitment. C. Advocate for accessible transportation systems. 2. Direct researchers to data sources for statistics regarding Alzheimer’s dis- ease and dementia in Virginia so that they can better write research fund- ing applications. C. Promote research participation in Virginia. 1. Develop training for gatekeepers (physicians, nurses, office managers, and other health professionals) on Alzheimer’s disease and the value of research participation. 2. Develop incentives, such as care coordination, research partnering and communications of study results, for health professionals who encourage research participation in the community. 9 15
  10. 10. a. Post white paper on barriers to research participation and solicit suggestions to overcome them through AlzPossible. b. Serve as a resource for university institutional review boards as they develop consistent methods for assessing and ap- proving dementia research studies . c. Use AlzPossible to link to additional resources related to research.3. Direct the Commission and VACAPI (Virginia Alzheimer’s Commission AlzPossible Initiative) to serve as a resource to evaluate “dementia ca- pable” services through the development of evidence-based protocol. a. Evaluate the effectiveness of common methods used to dis- seminate and translate evidence-based practices, and apply the results in Virginia. b. Support existing programs moving from being evidence- informed to evidence-based and implement promising prac- tices and programs statewide. 10 17
  11. 11. Adapted from Alzheimer’s Disease Facts and Figures, www.alz.orgThe Commonwealth of Virginias Alzheimers and Related Disorders Commission was In the United States, an estimated 5.4 million people are living with Alzheimer’s disease, and someone developscreated in 1982. The Commission serves as an advisory board in the executive the disease every 69 seconds. Unless something is done, as many as 16 million Americans will have Alzheimer’s inbranch of state government and aims to assist people with Alzheimers disease and 2050 and someone will develop the disease every 33 seconds. In 2010, 14.9 million family members and friends provid-related disorders and their caregivers. Under the Code of Virginia § 2.2-720: ed 17 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $202.6 billion. For Virginia, these statistics are:The Commission has the following powers and duties: Percentage Change in Numbers of1. Examine the needs of persons with Alzheimers disease and related disorders, as Virginians Aged 65 and Older with Alzheimer’s by Age Virginians with Alzheimers Disease well as the needs of their caregivers, and ways that state government can most Compared to 2000 % Change effectively and efficiently assist in meeting those needs; YEAR 65-74 75-84 85+ Total from 2000 60%2. Develop and promote strategies to encourage brain health and reduce cognitive 2000 7,100 56,000 41,000 100,000 decline; 2010 6,600 59,000 61,000 130,000 30% 40% 30%3. Advise the Governor and General Assembly on policy, funding, regulatory and 2020 8,900 64,000 67,000 140,000 40% other issues related to persons suffering from Alzheimers disease and related 2025 10,000 77,000 71,000 160,000 60% disorders and their caregivers;4. Develop the Commonwealths plan for meeting the needs of patients with Alzhei- Number of Total Hours of Total Value of 2010 2020 2025 YEAR Caregivers Unpaid Care Unpaid Care mers disease and related disorders and their caregivers, and advocate for such plan; 2008 250,025 215,821,226 2,395,615,613 2009 280,043 318,912,890 3,667,298,2365. Submit to the Governor, General Assembly, and Department, by October 1 of each year, an electronic report regarding the activities and recommendations of 2010 422,116 480,706,197 5,734,824,927 the Commission, which shall be posted on the Departments website; and6. Establish priorities for programs among state agencies related to Alzheimers dis- ease and related disorders and criteria to evaluate these programs. Total Virginia Nursing Home Residents,Throughout the years the Commission has served as advisory vehicle and information 2008hub across the Commonwealth. In 2009, in conjunction with other State Plan initia- 72,214tives, the Commission began reviewing other existing State Plans for Dementia withthe intent of more formally creating a plan for action to improve the lives of Virginiansaffected by Alzheimers and Related Disorders. The process began with Public Listen-ing sessions in five locations across the Commonwealth. These sessions were attend- Cognitive Impairment in Virginia Nursing Home Residents, 2008ed by over 90 people and were followed by extensive review by Commission members Number of Deaths Due toand Community Stakeholders. The Commission intends that this will be a living docu- Alzheimer’s Disease in Virginia,ment always responsive to the population we serve. None 33% Severe/ 2007 1703 Moderate 41% Mild/Very Mild 11 26% 19
  12. 12. ALZHEIMER’S ASSOCIATION CHAPTERS: SOUTHEASTERN VIRGINIA CHAPTER 5—LOA-Area Agency on Aging, Inc. 8D—Loudoun County Area Agency on Aging Email: 20—Senior Services of Southeastern VirginiaCENTRAL & WESTERN VIRGINIA CHAPTER Southeastern Virginia Chapter Office P.O. Box 14205 215 Depot Court, SE, Suite 231 78 A Counties of Halifax, Mecklenburg, & Brunswick. 5 Interstate Corporate CenterCharlottesville Office: 6350 Center Drive, Suite 102 Roanoke, Virginia 24038-4205 Leesburg, VA 20175 City of South Boston 6350 Center Drive, Suite 1011160 Pepsi Place, Suite 306 Norfolk, VA 23502 Susan Williams, Executive Director Lynn A. Reid, Administrator Norfolk, Virginia 23502Charlottesville, VA 22901 Phone: 757.459.2405; Fax: 757.461.7902 Phone: 540-345-0451 / Fax: 540-981-1487 Phone: 703-777-0257 FAX: 703-771-5161 14—Piedmont Senior Resources Area Agency John Skirven, Executive DirectorPhone: (434) 973-6122 Email: Email: on Aging, Inc. Phone: 757-461-9481 FAX: 757-461-1068Email: Eastern Shore Branch Office County of Loudoun P.O. Box 398 Email: 5432 Bayside Road Counties of Roanoke, Craig, Botetourt, & Alle- Burkeville, Virginia 23922-0398 Counties of Southampton & Isle of Wight. Cities ofDanville Office: Exmore, VA 23350 ghany. Cities of Salem, Roanoke, Clifton Forge, & 8E—Prince William Area Agency on Aging Ronald Dunn, Executive Director Franklin, Suffolk, Portsmouth, Chesapeake, Vir-308 Craghead St, Suite 104 Phone: 757.442.9652; Fax: 757.442.9393 Covington 5 County Complex, Suite 240 Phone: 434-767-5588 or 800-995-6918 ginia Beach, & NorfolkDanville, VA 24541 Woodbridge, VA 22192 FAX: 434-767-2529Phone: (434) 792-3700 Ext. 237 Williamsburg Branch Office 6—Valley Program for Aging Services, Inc. Courtney Tierney, MSW, CIRS-A, ICDVP, Dir. Email: 21—Peninsula Agency on Aging, Inc.Email: 213 McLaws Circle, Suite 2-B P.O. Box 14205 Phone: 703-792-6400 FAX: 703-792-4734 Counties of Nottoway, Prince Edward, Charlotte, 739 Thimble Shoals Boulevard Williamsburg, VA 23185 Waynesboro, VA 22980-0603 Email: Lunenburg, Cumberland, Buckingham, & Amelia Building 1000, Suite 1006Lynchburg Office: Phone: 757.442.9652; Fax: 757.221.0109 Paul Lavigne, Executive Director County of Prince William. Cities of Manassas, Newport News, VA 236061022 Commerce Street Phone: 540-949-7141or 1-800-868-8727 Manassas Park, & Woodbridge 15—Senior Connections- Capital Area Agency William Massey, CEOLynchburg, VA 24504 AREA AGENCIES ON AGING FAX: 540-949-7143 on Aging, Inc. Phone: 757-873-0541 FAX: 757-872-1437Phone: (434) 845-8540 1—Mountain Empire Older Citizens, Inc. Email: 9—Rappahannock-Rapidan Community Ser- 24 East Cary Street Email: ceo@paainc.orgEmail: P.O. Box 888 Counties of Rockingham, Rockbridge, Augusta, vices Board Richmond, VA 23219 Counties of James City & York. Cities of Williams- Big Stone Gap, VA 24219-0888 Highland, & Bath. Cities of Buena Vista, Lexing- P.O. Box 1568 Thelma Bland Watson, Executive Director burg Newport News, Hampton, & PoquosonRoanoke Office: Marilyn Maxwell, Executive Director ton, Waynesboro, & Harrisonburg Culpeper, VA 22701 Phone: 804-343-3000 or 800-995-69183959 Electric Rd, Suite 357 Phone: 276-523-4202 or 1-800-252-6362 Sallie Morgan, Dir.of Community Support Srvcs FAX: 804-649-2258 22—Eastern Shore Area Agency on Aging-Roanoke, VA 24018 FAX: 276-523-4208 7—Shenandoah Area Agency on Aging, Inc. Phone: 540-825-3100 Email: Community Action Agency, Inc.Phone: (540) 345-7600 Email: 207 Mosby Lane FAX: 540-825-6245; TDD: 540-825-7391 Counties of Charles City, Henrico, Goochland, P.O. Box 415Email: Counties of Lee, Wise, & Scott. City of Norton Front Royal, VA 22630-2611 Email: Powhatan, Chesterfield, Hanover, & New Kent. Belle Haven, Virginia 23306 Cindy Palmer, Director Counties of Orange, Madison, Culpeper, Rappa- City of Richmond Diane Musso, CEOGREATER RICHMOND CHAPTER 2—Appalachian Agency for Senior Citizens, Phone: 540-635-7141 or 1-800-883-4122 hannock, & Fauquier Phone: 757-442-9652 or 800-452-5977Richmond Inc. FAX: 540-636-7810 16 -Rappahannock Area Agency on Aging, Inc. FAX: 757-442-93034600 Cox Road, Suite 130 P.O. Box 765 Email: 10—Jefferson Area Board for Aging 171 Warrenton Road Email: esaaa@aol.comGlen Allen, VA 23060 Cedar Bluff, VA 24609-0765 Counties of Page, Shenandoah, Warren, Clarke, 674 Hillsdale Drive, Suite 9 Fredericksburg, VA 22405 Counties of Accomack & NorthamptonPhone: 804.967.2580; Fax: 804.967.2588 Regina Sayers, Executive Director & Frederick. City of Winchester Charlottesville, VA 22901 Jim Schaefer, Executive DirectorSherry Peterson, CEO Phone: 276-964-4915 or 1-800-656-2272 Gordon Walker, CEO Phone: 540-371-3375 or 800-262-4012 UNIVERSITY OF FAX: 276-963-0130 8A—Alexandria Office of Aging & Adult Svcs Phone: 434-817-5222; FAX: 434-817-5230 FAX: 540-371-3384 Memory Commons Email: 2525 Mount Vernon Avenue Email: Email: www.memorycommons.orgFredericksburg Counties of Dickenson, Buchanan, Tazewell, & Alexandria, VA 22301-1159 Counties of Nelson, Albemarle, Louisa, Fluvanna, Counties of Caroline, Spotsylvania, Stafford, &2217 Princess Anne St., Ste.106-1F Russell. MaryAnn Griffin, MSW - Director & Greene. City of Charlottesville King George. City of Fredericksburg Memory Disorders ClinicFredericksburg, VA 22401 Department of Human Resources UVA NeurologyPhone: 540.370.0835; Fax: 540.370.4976 3—District Three Governmental Cooperative Phone: 703.746.5692; Fax: 703.746.5975 11—Central Virginia Area Agency on Aging, 17/18—Bay Aging 500 Ray C. Hunt DriveLori Myers, Branch Coordinator 4453 Lee Highway Email: 501 12th Street, Suite A P.O. Box 610 Charlottesville, VA Marion, VA 24354-4270 Website: Lynchburg, VA 24504 Urbanna, VA 23175 Gen. appt 434-924-8668; Rsrch 434-243-5898 Mike Guy, Executive Director City of Alexandria Brenda Lipscomb, Acting Director Kathy Vesley, PresidentMiddle Peninsula/Northern Neck Phone: 276-783-8150 or Phone: 434-385-9070; FAX: 434-385-9209 Phone: 804-758-2386 FAX: 804-758-5773 VIRGINIA COMMONWEALTH UNIVERSITY’S6650 Main Street 1-800-541-0933 8B—Arlington Agency on Aging Email: Email: PARKINSON’S DISEASE CENTERGloucester, VA 23061 FAX: 276-783-3003 2100 Washington Boulevard, 4th Floor Counties of Bedford, Amherst, Campbell, & Appo- Counties of Westmoreland, Northumberland, www.parkinsons.vcu.eduPhone: 804.695.9382; Fax: 804.695.9278 Email: Arlington, VA 22204 mattox. Cities of Bedford & Lynchburg Richmond, Lancaster, Essex, Middlesex,Ellie Galloway, Branch Coordinator Counties of Washington, Smyth, Wythe, Bland, Terri Lynch, Director Mathews, King & Queen. King William, & VIRGINIA DEPARTMENT FOR THE Grayson, & Carroll. Cities of Galax & Brisol Phone: 703-228-1700 FAX: 703-228-1174 12—Southern Area Agency on Aging Gloucester 1610 Forest Avenue, Suite 100 TTY: 703-228-1788 204 Cleveland Avenue Richmond, VA 23229Tri-Cities 4—New River Valley Agency on Aging Email: Martinsville, VA 24112-4228 19—Crater District Area Agency On Aging Phone (local): (804) 662-9333201 Temple Ave., Suite E 141 East Main Street, Suite 500 County of Arlington Teresa Carter, Executive Director 23 Seyler Drive Toll Free 1-800-552-3402 (Nationwide Voice/TTY)Colonial Heights,VA23834 Pulaski, VA 24301 Phone: 276-632-6442 FAX: 276-632-6252 Petersburg, VA 23805 FAX: (804) 662-9354Phone: 804.526.2359; Fax: 804.526.4128 Tina King, Executive Director 8C—Fairfax Area Agency on Aging Email: David Sadowski, Executive DirectorFelicia Epps, Branch Coordinator Phone: 540-980-7720 FAX: 540-980-7724 12011 Government Center Parkway, Suite 720 Counties of Patrick Henry, Franklin, & Pittsylva- Phone: 804-732-7020 FAX: 804-732-7232 VACAPI (ALZPOSSIBLE) Email: Fairfax, VA 22035 nia. Cities of Martinsville & Danville Email: Counties of Giles, Floyd, Pulaski and Montgom- Grace Starbird, Director Counties of Dinwiddie, Sussex, Greensville, Sur-NATIONAL CAPITAL AREA CHAPTER ery, City of Radford Phone: 703-324-5411 FAX: 703-449-9552 13—Lake Country Area Agency on Aging ry, & Prince George. Cities of Petersburg,Northern Virginia Office Email: 1105 West Danville St Hopewell, Emporia, & Colonial Heights 123701 Pender Drive, Suite 400 County of Fairfax. Cities of Fairfax & Falls Church South Hill, Virginia 23970-3501Fairfax, VA 22030 Gwen Hinzman, President/CEOPhone: 703.359.4440 Phone: 434-447-7661 FAX: 434-447-4074 21