LEGISLATIVE COMMITTEE ON HEALTH CARE’S TASK FORCE TO DEVELOP A STATE PLAN TO ADDRESS ALZHEIMER’S DISEASE Senator Valerie Wiener, Chair Charles Bernick, M.D., Associate Medical Director,
Access to Services
Across Nevada, access to Alzheimer’s and dementia services depends on public and provider awareness, yet confusion remains about prognosis, how the disease develops, and what local supports exist for caregivers and families Education on detection, diagnosis, treatment, and the resources available is needed across urban hubs like Las Vegas and Reno and rural communities such as Denio Many Nevadans and their families are unaware that specialized diagnostic evaluation—often a neurological examination—exists along with a range of care and treatment options Barriers include distance to services and a shortage of specialists, making up-to-date information and accessible care particularly important Nevadans deserve quality diagnosis and treatment informed by current science, regardless of where they live in the state.
Home-based services provide caregiving support that allows people with Alzheimer’s disease or related disorders to stay in their own homes while easing the load on family caregivers These services include companionship, personal care (assistance with bathing, dressing, eating, etc.), homemaker tasks, and more specialized care Programs such as the Home and Community-Based Waiver (HCBW) and the Community Service Options Program for the Elderly (COPE), administered by the Aging and Disability Services Division (ADSD) of Nevada’s Department of Health and Human Services (DHHS), help individuals maintain independence and delay placement in long-term care facilities Private home-health agencies, regulated by the Bureau of Health Care Quality and Compliance (BHCQC) in the Health Division of DHHS, may also provide a range of home-based services In addition, services like adult day programs offer social stimulation, sometimes medical oversight, and respite for caregivers.
Although a cure for most dementias remains elusive, there are many ways to improve quality of life for both caregivers and care recipients Care management, counseling, socialization programs, support groups, and other supportive services have been shown to reduce stress and enhance overall well-being for people living with dementia and the individuals who care for them.
Many people assume that individuals with Alzheimer's disease and related disorders, along with those who care for them, prefer to be alone Because communication can be challenging with dementia, well-meaning friends often withdraw, fearing they might interfere or simply fearing the disease itself, which can leave both care recipients and caregivers at risk of social isolation Socialization programs provide essential opportunities for social interaction and support, helping to maintain connection and quality of life for both groups.
Caregivers often feel alone and isolated, believing they must provide care on their own even as the person they care for enters new phases of the disease Facilitating meaningful interaction for the care recipient and giving the caregiver a needed break helps prevent burnout for both parties Caregiver support groups are important because they provide emotional support, stress management strategies, practical problem-solving and coping skills, and opportunities to learn helpful techniques from others who share similar experiences.
Nevada’s ADRC maintains a website listing support groups and other nonmedical services and also publishes a Community Resource Guide, while national resources such as Alzheimers.gov and alz.org connect caregivers to available resources Despite these referral sites, testimony before the Task Force highlighted ongoing difficulties for families and professionals in locating and connecting with existing resources, and many Nevada caregivers remain unaware of free or low-cost services available in the state.
Recommendation 1 proposes establishing and funding a statewide information and referral system for individuals with Alzheimer’s disease and related disorders, their caregivers, and families, to connect with local case management and a wide range of support services The initiative uses public service announcements, existing newsletters, and other outreach channels to clearly spotlight where and how to access assistance, including resource centers such as the Nevada Aging and Disability Resource Centers (ADRC).
This indicator tracks engagement by monitoring the number of outreach contacts, the volume of inquiries about information or services related to Alzheimer's disease and related disorders received by the ADRC, and the hits on key information sites, including the expanded nevadaadrc.com, alz.org/norcal for Northern Nevada, alz.org/dsw for Southern Nevada, and Alzheimer’s.gov.
Potential funding sources include Older Americans Act funds, along with free public service announcements and free appearances on public affairs programs The program also provides a free media resource for news and feature stories across print, electronic, and Internet outlets Additional funding opportunities may be identified in the future.
Nevada’s geography is distinctive, with three principal metropolitan areas—Reno/Sparks/Carson City in the northwest, Elko in the northeast, and Las Vegas in the south—situated at corners of the state and separated by long stretches of open road and small towns Rural Nevada is geographically isolated from many services, leaving remote communities with limited access to essential resources Consequently, isolated towns struggle to recruit neurology and geriatrics specialists to provide care locally, impacting health outcomes for aging residents and those with neurological needs.
Distance can hinder face-to-face doctor visits for people with Alzheimer’s disease and related disorders due to limited access to transportation Providing reliable transportation with well-trained drivers and dedicated support staff is essential to delivering high-quality care, improving access to medical appointments, and supporting patients and families By removing transportation barriers, healthcare systems can ensure timely assessments, better treatment adherence, and comprehensive care for those affected by cognitive disorders.
According to the Nevada Rural and Frontier Health Data Book – 2011 Edition:
Most of Nevada’s rural and frontier communities are located in sparsely populated counties that are considerable distances from the state’s urban and tertiary care centers The long distances to acute care facilities mean residents often face extended travel times for emergency and specialized services In rural Nevada, the average distance between acute care hospitals remains substantial, underscoring the geographic barriers to timely care This geographic isolation contributes to disparities in access to health services and can impact health outcomes for people living outside metropolitan areas Solutions to close these gaps may include expanding rural hospital capacity, improving transportation and ambulance services, and increasing the availability of telemedicine and regional care networks to connect remote communities with essential medical expertise.
In Nevada, the distance to tertiary care hospitals averages 114.7 miles, while the nearest incorporated town is about 46.5 miles away from rural residents This geographic separation creates a primary health care delivery challenge for rural communities, limiting timely access to hospital-based specialty services, increasing travel burdens, and underscoring the need for strong local clinics, dependable emergency services, and telemedicine solutions to improve healthcare access.
Nevada's rural and frontier regions are defined by spatial isolation and vast geographic distances Eleven towns in Nevada host federally designated Critical Access Hospitals (CAHs), and on average these CAHs are located 45.5 miles from the nearest incorporated town, 54.4 miles from the next hospital, and 104.8 miles from the next level of care or nearest tertiary hospital.
Recommendation 2 advocates allowing nurse practitioners to operate independent practices to improve access to care, especially for rural elders This approach enables NP-led clinics to reach underserved communities by reducing barriers to primary care and expanding service delivery States such as Arizona, Idaho, Oregon, and Wyoming already authorize independent NP practice, providing real-world examples that can inform policy expansion.
Indicator: Monitor the number of applicants who file to practice independently, the venues where they intend to practice, and the populations they serve
Potential Funding: Health care insurance; Medicaid; Medicare; federally qualified health centers
Quality of Care
In 1984, the American Medical Association defined high-quality care as care that consistently contributes to the improvement or maintenance of the quality and/or duration of life It also identified the aspects of care that should be measured to determine quality, outlining the measurable features that define quality care.
Attention to evidence-based, scientific medicine;
Timely and efficient use of resources;
Emphasis on disease prevention and health promotion; and
Informed participation of patients xix
Improving the quality of care for people living with Alzheimer’s disease and related disorders in Nevada and across the United States matters for patients, families, and communities Quality care includes research, diagnostic services, residential and long‑term care, and well‑trained residential and health care professionals who support people at every stage of the condition.
According to the National Plan to Address Alzheimer’s Disease from the U.S Department of Health and Human Services, research is a central focus needed to advance understanding of the causes, prevention, and treatment of Alzheimer’s disease The plan identifies two core strategies related to research: identifying research priorities and milestones, and expanding research aimed at preventing and treating the disease Alzheimer’s research is funded by private nonprofit entities, organizations, foundations, and the federal government, with primary government support provided by the National Institute on Aging, the National Institutes of Health, and the U.S Department of Health and Human Services.
14 a chart, published February 13, 2012, outlining the annual support level for Alzheimer’s disease-related research based on grants, contracts, and other funding mechanisms used across the National Institutes of Health:
National Institutes of Health Alzheimer’s Disease Related Research Funding
(Dollars in millions and rounded)
* Additional funding was provided through the American Recovery and Reinvestment Act of 2009 (ARRA) The Fiscal Year (FY) 2013 estimated amount for Alzheimer’s disease research does not include $80 million budgeted in FY 2013 in the proposed Prevention and Public Health Fund allocation to the DHHS General Departmental Management budget The total Alzheimer’s disease research expenditures, including these resources, would be $529 million in FY 2013
According to the National Plan, the federal government intended to allocate $50 million in new Alzheimer’s disease research funding in FY 2012, and $80 million in new Alzheimer’s disease research funding in FY 2013 In Nevada, the ADSD currently provides dementia research and diagnosis funding to the Cleveland Clinic Lou Ruvo Center for Brain Health–Alzheimer’s Diagnostic, Las Vegas, through Title III-B of the Older Americans Act Various program partners and other community organizations, which apply for funding independently, obtain additional funding for research and diagnosis efforts
Alzheimer’s Services—ADSD Grant Funded Services FY 2012-2013
Type of Funds Grantee Type of Service FY 2012-2013
Northern Nevada Office, Alzheimer’s Association Caregiver Support $42,165 Independent Living
Title III-B Cleveland Clinic Lou Ruvo Center for Brain Health Diagnostic $83,088
Title III-E University of Nevada, Reno Caregiver Support $106,432
Title III-E Cleveland Clinic Lou Ruvo Center for Brain Health Caregiver Support $72,677
Alzheimer’s Disease Supportive Services Program (ADSSP) FYs 2010-2013*
Northern Nevada Office, Alzheimer’s Association CarePro $227,900
Desert Southwest Chapter, Alzheimer’s Association CarePro $275,234
Cleveland Clinic Lou Ruvo Center for Brain Health CarePro $260,595
Arizona State University (Research) CarePro $173,435
*Three-year discretionary grant from the U.S Administration on Aging
Nevada is positioned to compete for additional funding to support brain-health research Testimony presented to the Task Force highlights a diverse portfolio of studies, with a focus on early detection of cognitive decline and Alzheimer’s disease The Cleveland Clinic Lou Ruvo Center for Brain Health is involved in national research on brain imaging and a blood test for Alzheimer’s disease Early detection tests include brain imaging and biomarker blood tests that aim to identify risk earlier and guide interventions.
Spinal fluid measuring of amyloid;
Imaging amyloid in the brain through a scan; and
Testing to measure the volumes of the brain, because when certain areas of the brain start shrinking, it has been found to be an indicator of Alzheimer’s disease xx
In addition, various treatment strategies and prevention trials are being undertaken
Several issues limit research trials in Nevada and across the country, including:
Challenges to enrolling enough people who are representative of the country’s population, in research trials;
Limited research in basic science in Nevada; and
No biotech companies in Nevada focused on Alzheimer’s disease and related disorders
To accelerate Nevada’s research landscape, the Task Force called for intensified education and promotion of clinical trials within the health care system, along with the development of new partnerships and outreach programs It also focused on identifying and removing barriers that limit enrollment of people with dementia in studies Following these discussions and a review of recommendations, the Task Force adopted several concrete recommendations to expand trial participation and access.
Recommendation 7: Establish a Nevada consortium to maximize current and future research and diagnostic efforts in our State to address Alzheimer’s disease and related disorders
Indicators: Compile a list of Alzheimer’s-related researchers and research facilities in
Nevada Establish a facilitator and key consortium partners
Potential Funding: In-kind contributions from potential participants, i.e., Cleveland Clinic’s
Lou Ruvo Center for Brain Health, Touro University Nevada, Nevada System of Higher Education (NSHE), and other educational institutions in Nevada
Recommendation 8 calls for expanding research opportunities across Nevada to study current medications and develop new treatments for Alzheimer's disease and related disorders, and it also emphasizes disseminating information about available treatments to Nevada residents, including approved drug regimens, investigational drugs accessible to them, and the potential side effects of these medications.
Indicators: Compile a list of current research projects Increase in the number and type of research projects based in Nevada Increase in utilization of available treatment by individuals in Nevada
Potential Funding: Federal Alzheimer’s research grants; private-sector foundation grants; Cleveland Clinic Lou Ruvo Center for Brain Health
Quality care for Alzheimer's disease begins with improved detection and diagnosis To address and ultimately prevent Alzheimer's disease, three key elements are essential: a clear understanding of the disease process, early detection and diagnosis, and the development of disease-modifying treatments.
Early diagnosis of Alzheimer's disease, followed by appropriate treatment, helps patients maintain functional independence and allows families to plan for the future Advances in imaging and biomarkers across brain tissue, blood, and cerebrospinal fluid enable clinicians to identify the onset of Alzheimer's disease, monitor its progression, and assess the effects of treatment Evidence presented to the Task Force and the National Plan indicates that the brain changes that lead to Alzheimer's disease can begin up to ten years before symptoms appear.
Timely Alzheimer's disease diagnosis is hindered by several factors: there is no single definitive test or universal screening method; communication between healthcare providers and patients or caregivers is often inadequate; diagnostic screening can be costly and incompletely covered by insurance; and cultural barriers and social stigma deter people from seeking a diagnosis The Task Force therefore urges using direct care funding—such as Medicaid Annual Wellness Visits—to promote early detection and diagnosis.
In Nevada, the Bureau of Health Care Quality and Compliance (BHCQC) licenses, inspects, and regulates all medical and related facilities in the state For Alzheimer's care, BHCQC oversees long-term care options that include residential care facilities for groups and skilled nursing facilities Surveys (inspections) are conducted in accordance with applicable regulations, based on the facility type, and follow defined time frames and procedures The BHCQC also conducts complaint investigations for all licensed and/or certified facilities Both long-term care facility types receive annual inspections, and inspection and survey results are posted on the Health Division’s website at: http://search.health.nv.gov/SOD.
Alongside the BHCQC, several Nevada state entities contribute to safeguarding the quality of long-term care for Alzheimer’s patients The Nevada State Board of Examiners for Administrators of Facilities for Long-Term Care was created by the Legislature to oversee administrators of long-term care facilities and uphold professional standards across the sector.
Under Nevada Revised Statutes 654.050 (1969), the Board of Examiners for Long-Term Care Administrators (BELTCA) serves as the licensing and regulatory authority for long-term care administrators in Nevada, overseeing nursing homes and group care facilities, including assisted living facilities BELTCA protects public and consumer interests by ensuring that long-term care administrators in the state possess good moral character and are properly educated and trained to care for Nevada’s citizens in a dignified and caring manner.
The Office of the State Long-Term Care Ombudsman is a federally mandated program administered by the ADSD It advocates for adults aged 60 and older who live in long-term care facilities Certified ombudsman staff regularly visit facilities to listen to residents, help resolve problems, and provide information The Ombudsman office does not investigate cases of abuse, exploitation, isolation, or neglect; those investigations fall under the Elder Protective Services Unit within ADSD.
Residential care facilities must meet certain requirements in Nevada to be recognized as
Quality of Life
For the Persons With Dementia
Cognitive disorders, including Alzheimer’s disease, bring profound changes that can trigger frustration, sadness, anger, and worry Dementia progressively erodes the ability to perform daily activities and limits access to pleasant experiences, reducing quality of life Depression and anxiety are highly prevalent in dementia, with clinically significant depression found in about 20–30% of community-dwelling individuals with dementia—rates notably higher than those in the general population.
2 percent prevalence of depression in individuals over the age of 65 xxvi Anxiety has been found in 20 percent of community-dwelling individuals with dementia xxvii
Psychosocial interventions can alleviate depression and anxiety in people with dementia, offering meaningful relief and improving quality of life In addition, support groups help individuals with dementia maintain current skills, plan for the future, and stay engaged in activities they care about Complementary approaches such as physical therapy and aromatherapy have also shown benefits, contributing to overall well-being and functional engagement.
People with dementia often have comorbid conditions that are more difficult to treat because the dementing illness complicates overall care They may be unable to verbally report internal sensations such as pain, fatigue, or hunger, which can make symptoms harder to detect This verbal impairment increases the risk of excess disability—greater impairment than would be expected from the underlying condition alone Research indicates that individuals with dementia and comorbid cancer or other serious illnesses are more likely to receive less pain medication than nondemented patients.
Preserving independence is a central concern for people living with dementia As the disease progresses, individuals become more reliant on others, but families and care providers can protect safety and well-being while preserving choices and dignity A growing body of research shows substantial benefits from a person-centered approach that prioritizes autonomy and the ability to decide By balancing supportive help with opportunities to participate in daily decisions, caregivers can maintain meaningful independence and improve quality of life throughout dementia care.
Caregivers of people with dementia report high levels of anxiety, burnout, depression, and stress, which can also manifest as physical health problems such as an increased risk of cardiovascular disease, hypertension, and impaired immune function Elderly caregivers face a markedly higher mortality risk—about 63 percent greater—than noncaregivers of the same age These findings underscore the significant mental and physical health toll of dementia caregiving.
High caregiver stress, coupled with insufficient dementia education and poor coping skills, raises the risk of elder abuse for the person receiving care The 2004 fiscal year data from the National Adult Protective Services report show more than half a million elder abuse investigations, illustrating the scale of the problem Because families and professionals may be unaware of reporting criteria and lack valid screening tools, many cases go unreported, highlighting gaps in detection and prevention of elder abuse.
Evidence shows that dementia education and structured caregiver support groups reduce caregiver depression, stress, and related problems It is important for caregivers to stay connected to their social networks and valued activities, as dementia stigma can lead to isolation and may cause family and friends to withdraw, with caregivers feeling ashamed or reluctant The demands of being a primary caregiver create significant time and energy barriers to socializing, pursuing enjoyable activities, and maintaining self-care Respite care—brief breaks from caregiving—has consistently been identified as a vital service to support caregiver health and well-being.
Recommendation 15: Provide and expand respite services for family caregivers of persons with
An initiative focusing on Alzheimer's disease and related disorders aims to reduce emergency room visits and caregiver stress by expanding access to support services It also seeks to broaden eligibility for respite programs and grants so that more families can benefit, regardless of financial status or age.
Indicators: Number of caregivers using respite services; hours of respite utilized
Potential Funding: Fund for a Healthy Nevada; Retired and Senior Volunteer Program (RSVP); Older Americans Act funding
Recommendation 16: Explore the use of volunteers to provide support to family caregivers by collaborating with community organizations and faith-based groups
Indicators: Monitor volunteer organizations that agree to provide support
Potential Funding: Voluntary outreach by members of the Task Force and other volunteers
Mandate administrative or judicial reviews for all individuals with dementia under guardianship who are involuntarily placed outside their home state These reviews should be conducted at least every six months to reevaluate the placement’s appropriateness, the quality and reasonableness of the care, and the efforts to return the person to their home or to the most homelike, least restrictive setting.
Indicators: Coordinate with the appropriate agencies (Medicaid, judiciary, public guardians, and the Legislature) for development of recommendations for legislation
Recommendation 18 calls for establishing hospital transitional care programs that provide caregivers and persons with dementia with access to information about community resources, and it urges pursuing federal funding through Medicare Innovations or the Centers for Medicare & Medicaid Services to develop a transitions planning program or to avoid hospitalization by implementing a mobile dementia team approach.
Indicators: Increasing number of home-based services and long-term care in the State Establishing a central location where available appropriate placements can be accessed
Potential Funding: Collaboration between Nevada ADSD, Nevada DHCFP, and other appropriate State agencies.
Public Awareness
Although Nevada has not implemented a state-specific dementia awareness program, the Alzheimer’s Association and the U.S Department of Health and Human Services have begun television, radio, and print advertisements that describe Alzheimer’s disease and related research efforts, encouraging people to visit informational websites such as Alzheimers.gov.
ADSD has developed an Elder Abuse Training Program that has been delivered to social workers and care providers across the state The program is available on the ADRC website It explains the different types of elder abuse in detail and outlines the potential signs of abuse, helping professionals recognize and respond effectively.
It is difficult to estimate how much elder abuse goes unreported, but research suggests that many cases are not reported xli
Public education programs about dementia are being implemented in various countries for professionals who frequently interact with the public—such as pharmacists, government officials, and police—so they understand dementia characteristics and can communicate effectively with people affected Even though dementia care is not their primary responsibility, these professionals may still encounter individuals with dementia and benefit from knowing what to expect and how to interact Such programs can also empower citizens to report suspected elder abuse, even when they are not mandated reporters, and help address concerns like wandering.
People with dementia often experience deficits in short- and long-term memory, as well as impaired spatial orientation and wayfinding, which heightens the risk of wandering—leaving the person behind and not remembering where to go or how to return home Wandering can put them at risk of exploitation, injury, and even death, while also causing significant distress for family members and sometimes leading to a dismissal from a long-term care facility.
Senate Bill 245 (Chapter 184, Statutes of Nevada 2011) established the Statewide Alert System for the Safe Return of Missing Endangered Older Persons, a Silver Alert program modeled on successful implementations in 28 other states The goal is to quickly and safely return wandering older individuals to their homes by issuing timely alerts and coordinating law enforcement, transportation, and community resources across Nevada.
The MedicAlert + Alzheimer’s Association Safe Return bracelet program is a safety solution for wandering, offering a wearable ID bracelet with identifying and contact information for people with dementia, designed to be worn at all times The bracelet helps identify the person if they become lost or need assistance In Nevada, the Alzheimer’s Association has reported that this program has been underutilized.
Driving poses a major public safety concern for people with Alzheimer's disease and related dementias, while also representing independence and identity for many who continue driving after a dementia diagnosis, often due to limited public transit in Nevada Dementia-related impairments in vision, spatial awareness, motor coordination, planning, and memory make driving dangerous, and the DMV can revoke a license after a failed paper or driving test Physicians or friends may refer individuals to the DMV if concerns arise about driving abilities, and improving public safety could come from more reliable testing of driving safety in people with dementia and helping them access alternative transportation options.
Recommendation 19 calls for partnering with the business community to develop employee assistance programs that include caregiver education and training, ensuring workplaces support employees who care for loved ones with dementia It also advocates forming alliances with other organizations affected by Alzheimer’s disease and related disorders—such as diabetes, stroke, and heart disease groups—to amplify the reach of information about services and care for people exhibiting dementia symptoms.
Indicators: Number of employee assistance programs with caregiver education and training; number of partnerships with other dementia-related organizations
Potential Funding: Employers and other potential grant funding sources
Recommendation 20 calls for three awareness campaigns designed to inform the public about the earliest signs of dementia and to counter the stigma of Alzheimer’s disease and related disorders, featuring updates on current research and prevention trials that can delay progression and information showing how earlier diagnosis and intervention can lead to a more productive and meaningful life The campaigns aim to make people feel supported, hopeful, and more likely to access available services, and will be promoted through television and radio advertisements, public service announcements, broadcast and print interviews, and articles in newspapers, magazines, and online platforms Each campaign targets a specific audience: allied health professionals, bankers, emergency first responders, financial planners, lawyers, and others who may interact with people with dementia; the general public; and caregivers and family members of people with dementia The effort focuses on reducing fear, stress, stigma, and isolation, and includes education about caregiver support groups and other services to help caregivers care for themselves and their loved ones.
Indicators: Number of media advertisements, announcements, interviews, and stories; number of professionals and professional organizations contacted; number of visits to the Nevada ADRC website
Potential Funding: Volunteers from the Task Force; Alzheimer’s Association; professional licensing boards and organizations; Nevada Broadcaster’s Association; Nevada ADSD; other potential grant funding sources
In conclusion, the Task Force views this plan as a living document It is important to continue the discussion and monitor the implementation of the recommendations
After marrying the love of my life and moving to Reno, I began noticing troubling signs we fought to get anyone to pay attention to I had to go back to work when he lost his job, and we couldn’t get any information about what was happening We even lost the friends we had in Reno because the stigma around this disease was terrible It doesn’t matter who you are—this disease can happen to anyone—and my husband continues to decline, leaving us to navigate a difficult, uncertain future together.
I had to leave my work because I developed pneumonia and it has gone on for more than a month This is a disease that can happen to anyone
–Melissa, primary caregiver for her husband i Eboli Bello, V., & Schultz, R (2011) “Prevalence of treatable and reversible dementias: A study in a dementia outpatient clinic.”
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“Early-onset familial Lewy body dementia with extensive tauopathy: A clinical, genetic, and neuropathological study.” Journal Of Neuropathology And Experimental Neurology, 68(1): 73-82 iv Hebert, L.E., Scherr, P.A., Bienias, J.L., Bennett, D.A., & Evans, D.A (2003) “Alzheimer’s disease in the U.S population: Prevalence estimates using the 2000 census.” Archives of Neurology, 60: 1119–1122; Plassman, B.L., Langa, K.M., Fisher, G.G., Heeringa, S.G.,
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Key strands in Alzheimer's and dementia research include policy-relevant economic analysis, national disease facts, and the role of diagnostic disclosure Oremus and Aguilar (2011) conducted a systematic review to assess the policy-making relevance of dementia cost-of-illness studies in the United States and Canada, highlighting how economic evidence informs resource allocation and policy decisions The Alzheimer's Association (2012) “2012 Alzheimer’s disease facts and figures” provides essential epidemiological data, burden estimates, and trend analyses that support public health planning and advocacy Husband (2000) discusses diagnostic disclosure in dementia as an opportunity for intervention, emphasizing implications for patient care and caregiver support.
Collectively, these references address public attitudes toward Alzheimer's disease and dementia, the stigma faced by families dealing with mental illness, and the role of caregiver support groups in dementia care The Harris Interactive/MetLife Foundation survey (2011) probes American views on Alzheimer's, highlighting awareness gaps and attitudes that shape caregiving decisions Larson and Corrigan (2008) document how stigma affects families of individuals with mental illness, underscoring barriers to seeking help Chien et al (2011) synthesize evidence from caregiver support group studies in dementia through a meta-analysis, indicating potential benefits for both patients and caregivers Gaugler, Gallagher-Winker, Kehrberg, and colleagues further contribute to the understanding of dementia care trajectories and the impact of support mechanisms.
Memory Club programs provide structured support for people with early-stage dementia and their care partners, combining education, social engagement, and practical strategies to manage memory challenges and daily routines These initiatives aim to reduce caregiver burden, enhance communication, and preserve quality of life for both individuals and their partners Research on caregiving also highlights caregiver health as a crucial outcome, with sustained caregiving stress linked to adverse health effects and, in some findings, higher mortality risk By addressing both the needs of the person with dementia and the well-being of the caregiver—through education, respite, and ongoing support—these programs promote continued community participation and home-based care.
Medical Association, 282: 2215-2219 xiv Gaugler, J E., Gallagher-Winker, K., Kehrberg, K., Lunde, A M., Marsolek, C M., Ringham, K., & Barclay, M (2011)