Mes: marzo 2021

CHICAGO, 2 de marzo de 2021 /PRNewswire-HISPANIC PR WIRE/ — Los resultados de dos encuestas nacionales que aparecen en el informe 2021 Alzheimer’s Disease Facts and Figures (Datos y cifras sobre la enfermedad de alzhéimer de 2021) de Alzheimer’s Association revelan que la discriminación es una barrera para la atención del alzhéimer y la demencia. Más de un tercio de los afroamericanos (36 %) y casi un quinto de los hispanoamericanos (18 %) y asiaticoamericanos (19 %) cree que la discriminación sería una barrera para recibir atención para el alzhéimer. Además, la mitad o más de los cuidadores no blancos dicen haber sufrido discriminación al explorar los entornos de atención médica para el beneficiario que necesita su atención.

El informe Facts and Figures de 2021 ofrece una mirada en profundidad de las últimas estadísticas nacionales sobre la prevalencia, la incidencia, la mortalidad, los costos de la atención y el impacto en los cuidadores de personas con alzhéimer. Por primera vez, el informe especial adjunto, «Race, Ethnicity and Alzheimer’s in America» (Raza, origen étnico y alzhéimer en Estados Unidos), examina las perspectivas y experiencias de los asiaticoamericanos, afroamericanos, hispanos, nativos americanos y blancos con respecto a la atención del alzhéimer y la demencia.

Los hallazgos del informe revelan que las poblaciones raciales/étnicas no blancas prevén tener y tienen más barreras para acceder a la atención de la demencia y tienen menos confianza en la investigación médica y en el acceso a profesionales de la salud que comprendan sus antecedentes y experiencias étnicas y raciales. Hallazgos destacados:

• Dos tercios de los afroamericanos (66 %) creen que tienen más dificultades para obtener una atención de excelencia para el alzhéimer u otras demencias. Del mismo modo, dos de cada cinco nativos americanos (40 %) e hispanoamericanos (39 %) creen que su propia raza o etnia tiene más dificultades para obtener atención, al igual que un tercio de los asiaticoamericanos (34 %).
• Casi dos tercios de los afroamericanos (62 %) creen que la investigación médica está sesgada en contra de las personas de color, una opinión que comparten una cantidad importante de asiaticoamericanos (45 %), nativos americanos (40 %) e hispanoamericanos (36 %). Solo la mitad de los afroamericanos (53 %) confía en que una futura cura para el alzhéimer se compartirá de manera equitativa, independientemente de la raza, el color o la etnia.
• Menos de la mitad de los afroamericanos (48 %) y los nativos americanos (47 %) se sienten seguros de tener acceso a proveedores que comprendan sus antecedentes y experiencias étnicas o raciales, y apenas alrededor de tres de cada cinco asiaticoamericanos (63 %) e hispanos (59 %) se sienten igual de seguros.

«A pesar de los esfuerzos continuos para abordar las disparidades de salud y atención médica para la demencia y la enfermedad de alzhéimer, los resultados de la encuesta muestran que todavía queda mucho trabajo por hacer», dijo Carl V. Hill, Ph.D., MPH., director de Diversidad, Equidad e Inclusión de Alzheimer’s Association. «Claramente, la discriminación, la falta de diversidad entre los profesionales de atención médica y la desconfianza en la investigación médica crean barreras importantes para la atención médica y exigen la atención completa del país».

No obstante, los episodios de discriminación se extienden más allá de la atención del alzhéimer y la demencia; las encuestas de Alzheimer’s Association revelan que muchos estadounidenses no blancos dicen haber experimentado discriminación en el sistema de atención médica en general. Específicamente:

• La mitad de los afroamericanos (50 %) informa que ha sufrido de discriminación al solicitar atención médica, al igual que más de cuatro de cada diez nativos americanos (42 %) y un tercio de los asiaticoamericanos (34 %) e hispanoamericanos (33 %).

Las experiencias y opiniones de discriminación expresadas por los encuestados en ambas encuestas también se reflejan en sus opiniones sobre la participación en ensayos clínicos.

Los afroamericanos tienen menos interés en los ensayos de investigación clínica para prevenir o retrasar la evolución del alzhéimer. Los estadounidenses blancos son más propensos a expresar interés en los ensayos (82 %), seguidos por los nativos americanos (81 %), los hispanoamericanos (78 %), los asiaticoamericanos (73 %) y, por último, los afroamericanos (67 %).

La razón que se menciona con más frecuencia para no participar en ensayos clínicos entre todos los grupos raciales/étnicos es no querer ser «conejillos de indias». Este sentimiento fue especialmente fuerte entre los afroamericanos (69 %). Además, a casi la mitad de los afroamericanos (45 %) les preocupa que los tratamientos puedan causar enfermedades. Además, tienen el doble de probabilidades que otros grupos de decir que «no confían en la investigación médica» y más del doble de probabilidades que otros grupos raciales o étnicos de decir que «es posible que no reciban un trato justo».

Como se señaló en el informe 2021 Facts and Figures (Hechos y cifras de 2021), las disparidades socioeconómicas y de salud y el racismo sistémico contribuyen a un mayor riesgo de alzhéimer y demencia en las comunidades de color. Según el informe, los afroamericanos y los hispanos de edad avanzada también son desproporcionadamente más propensos a padecer alzhéimer y otras demencias. Además, ambos grupos tienen más probabilidades de tener diagnósticos erróneos en comparación con los blancos de edad avanzada.

«Debemos seguir acelerando los esfuerzos para involucrar a más personas de poblaciones subrepresentadas en la investigación y los ensayos clínicos de la enfermedad de Alzheimer», dijo María Carrillo, Ph.D., directora científica de Alzheimer’s Association. «Si los ensayos no incluyen a participantes diversos, es imposible obtener una comprensión completa de cómo las diferencias raciales y étnicas pueden afectar el beneficio y la seguridad de los posibles tratamientos. Las futuras estructuras de ensayos clínicos y los esfuerzos de reclutamiento deben generar una mejor representación de toda la población para que todos se beneficien de los avances en la investigación del alzhéimer y la demencia».

El impacto de la COVID-19

El informe también examina el impacto devastador que la pandemia de la COVID-19 está teniendo en las personas que sufren de alzhéimer. Según el informe, hubo al menos 42,000 muertes más por alzhéimer y otras demencias en 2020 en comparación con los promedios de los cinco años anteriores, un aumento del 16 %.

El informe destaca datos preliminares y anecdóticos que indican que la pandemia de la COVID-19 también está teniendo efectos adversos en muchos cuidadores familiares. Indica que los desafíos de la prestación de servicios de cuidado relacionados con la pandemia, incluso el cierre de centros de día para adultos y la incapacidad de las familias para visitar o comunicarse con familiares en entornos de cuidados a largo plazo, han causado «angustia emocional y otros resultados negativos en los cuidadores». 

Alzheimer’s Association y representantes de más de 30 países han formado un consorcio internacional para estudiar las consecuencias a corto y largo plazo de la COVID-19 en el cerebro y el sistema nervioso de personas de diferentes edades y distintos antecedentes genéticos.

Datos y cifras sobre el alzhéimer de 2021: un vistazo

Prevalencia, incidencia y mortalidad

• Se estima que 6.2 millones de estadounidenses de 65 años o más padecerán demencia de tipo alzhéimer en 2021.
• Más de una de cada nueve personas (11.3 %) de 65 años o más padece demencia de tipo alzhéimer.
• Dos tercios de los estadounidenses mayores de 65 años con alzhéimer (3.8 millones) son mujeres.
• Las muertes por alzhéimer entre 2000 y 2019 se han duplicado y superado ese número, y han aumentado un 145 %.
• Uno de cada tres adultos mayores muere con alzhéimer u otro tipo de demencia.

Cuidado

• En 2020, más de 11 millones de cuidadores de personas con alzhéimer u otras demencias proporcionaron aproximadamente 15,300 millones de horas de atención no remunerada, una contribución a la nación valuada en $257,000 millones. 
• Casi la mitad de los cuidadores (48 %) que brindan ayuda a un adulto mayor lo hacen por alguien que padece alzhéimer u otro tipo de demencia. 
• Aproximadamente dos tercios de los cuidadores son mujeres y un tercio de los cuidadores de personas con demencia son hijas de esas personas.
• El 41 % de los cuidadores tienen un ingreso familiar de $50,000 o menos.

Costo de la atención

• En 2021, los pagos totales para todas las personas con alzhéimer u otras demencias se estiman en $355,000 millones (sin incluir el cuidado no remunerado).
• Se espera que Medicare y Medicaid cubran $239,000 millones o el 67 % de los pagos totales de atención médica y atención a largo plazo para las personas con alzhéimer u otras demencias. Se espera que los gastos de bolsillo sean de $76,000 millones. 
• Se prevé que el costo total de la atención médica, el cuidado prolongado y el cuidado paliativo para personas con alzhéimer y otros tipos de demencia aumente a más de $1.1 billones en 2050.
• El costo total de la atención de por vida de una persona que padece demencia se estima en $373,527. 

A continuación, se incluyen datos adicionales del informe. Puede acceder al texto completo del informe 2021 Alzheimer’s Disease Facts and Figures, incluido el informe especial adjunto «Race, Ethnicity and Alzheimer’s in America» en alz.org/facts. El informe también aparecerá en la edición de marzo de 2021 de Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

Otros hallazgos clave del informe «Race, Ethnicity and Alzheimer’s in America»:

• La preocupación por el desarrollo de alzhéimer es menor entre los nativos americanos (25 %), los afroamericanos (35 %) y los hispanos (41 %), especialmente en comparación con los blancos (48 %).
• Más de un tercio de los nativos americanos (35 %) y casi tres de cada diez hispanos (28 %) no creen que vivirán lo suficiente para desarrollar alzhéimer u otra demencia.
• Más de la mitad de los estadounidenses que no son blancos creen que la pérdida significativa de memoria o capacidades cognitivas es «una parte normal del envejecimiento».
• Los hispanos, afroamericanos y nativos americanos tienen el doble de probabilidades que los blancos de decir que no verán a un médico si experimentan problemas de memoria o de razonamiento.
• Uno de cada cinco afroamericanos (21 %) e hispanoamericanos (20 %) dice que se sentiría ofendido si un médico sugiriera una evaluación cognitiva.
• Casi dos de cada tres cuidadores (64 %) en todos los grupos dicen que cuidar es estresante, pero casi todos (92 %) dicen que también es gratificante.

Estadísticas actualizadas del alzhéimer

El informe Facts and Figures de Alzheimer’s Association ofrece una mirada anual de las últimas estadísticas nacionales e información sobre la prevalencia, incidencia, la mortalidad y la morbilidad del alzhéimer, así como también de los costos de atención y cuidado de personas, tanto a nivel nacional como por estado.  

Acerca del informe 2021 Alzheimer’s Disease Facts and Figures 

El informe 2021 Alzheimer’s Disease Facts and Figures de Alzheimer’s Association es una compilación exhaustiva de estadísticas nacionales e información sobre la enfermedad de alzhéimer y las demencias relacionadas. El informe comunica el impacto del alzhéimer en las personas, los familiares, el Gobierno y el sistema de salud nacional. Desde su publicación inicial en 2007, el informe se ha convertido en una fuente preeminente que abarca el amplio espectro de problemas que derivan del alzhéimer. El informe Facts and Figures es una publicación oficial de Alzheimer’s Association.

Acerca de la encuesta

Versta Research realizó dos encuestas en nombre de Alzheimer’s Association: (1) adultos estadounidenses y (2) cuidadores actuales o recientes de adultos de 50 años o más con problemas cognitivos. Se preguntó a los encuestados sobre el acceso a la atención médica y los servicios de apoyo, la confianza en los proveedores y el sistema de atención médica, la participación en ensayos clínicos e investigaciones y las experiencias de los cuidadores. Las encuestas se realizaron del 26 de octubre al 11 de noviembre de 2020. Los datos fueron recopilados por NORC en la Universidad de Chicago a través del panel AmeriSpeak®. AmeriSpeak es un panel basado en probabilidades de todos los hogares estadounidenses. 

La encuesta incluyó a 945 encuestados blancos. Los sobremuestreos de hispanos (n=541), afroamericanos (n=515) y asiaticoamericanos (n=412) se ponderaron contra sus proporciones poblacionales reales para obtener análisis e informes estadísticos. Para la inclusión completa de los nativos americanos, se administró la misma encuesta a una muestra adicional de 406 nativos americanos reclutados a través de paneles en línea (no probabilísticos) con muestreo estratificado y datos ponderados por género, edad, ingresos y educación para alinearlos con los datos de la Oficina del Censo de los EE. UU. Las encuestas se ofrecieron tanto en inglés como en español. Para obtener detalles completos sobre la metodología de la encuesta, consulte la página 73 del informe.

Acerca de Alzheimer’s Association

Alzheimer’s Association lidera el camino para acabar con el alzhéimer y todas las demás demencias, acelera la investigación global, impulsa la reducción de riesgos y la detección temprana, y maximiza la atención y el apoyo de calidad. Nuestra visión es un mundo sin alzhéimer ni todas las demás demencias. Para obtener más información, visite alz.org o llame a la línea de ayuda gratuita las 24 horas del día, los 7 días de la semana: 800.272.3900.

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FUENTE Alzheimer’s Association

CHICAGO, March 2, 2021 /PRNewswire-HISPANIC PR WIRE/ — Findings from two national surveys appearing in the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report reveal that discrimination is a barrier to Alzheimer’s and dementia care. More than one-third of Black Americans (36%), and nearly one-fifth of Hispanic Americans (18%) and Asian Americans (19%), believes discrimination would be a barrier to receiving Alzheimer’s care. In addition, half or more of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient.

The 2021 Facts and Figures report provides an in-depth look at the latest national statistics on Alzheimer’s prevalence, incidence, mortality, costs of care and impact on caregivers. For the first time, the accompanying special report, «Race, Ethnicity and Alzheimer’s» examines perspectives and experiences of Asian, Black, Hispanic, Native and White Americans in regard to Alzheimer’s and dementia care.

Findings in the report, reveal that non-White racial/ethnic populations expect and experience more barriers when accessing dementia care, have less trust in medical research and are less confident that they have access to health professionals who understand their ethnic and racial background and experiences. Among the findings:

• Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias. Likewise, 2 in 5 Native Americans (40%) and Hispanic Americans (39%) believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans (34%).
• Nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%) and Hispanic Americans (36%) as well. Only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity.
• Fewer than half of Black (48%) and Native Americans (47%) feel confident they have access to providers who understand their ethnic or racial background and experiences, and only about 3 in 5 Asian Americans (63%) and Hispanics (59%) likewise feel confident.

«Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,» said Carl V. Hill, Ph.D., MPH. chief diversity, equity and inclusion officer, Alzheimer’s Association. «Clearly, discrimination, lack of diversity among health care professionals and mistrust in medical research create significant barriers to care and demand the country’s full attention.»

Episodes of discrimination, however, extend beyond Alzheimer’s and dementia care, the Alzheimer’s Association surveys found that many non-White Americans say they have experienced discrimination in the broader health care system. Specifically:

• Half of Black Americans (50%) report they’ve experienced discrimination when seeking health care; more than 4 in 10 Native Americans (42%) and one-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced health care discrimination.

The experiences and views of discrimination expressed by respondents in both surveys are also reflected in their views on clinical trial participation.

Black Americans have less interest in clinical research trials to prevent or slow the progression of Alzheimer’s disease. White Americans are most likely to express interest (82%), followed by Native Americans (81%), Hispanic Americans (78%), Asian Americans (73%) and lastly, Black Americans (67%).

The most common reason cited for not participating in clinical trials among all racial/ethnic groups is not wanting to be a «guinea pig.» This sentiment was especially strong among Black Americans (69%). In addition almost half of Black Americans (45%) worry that treatments might cause sickness. They are also twice as likely as other groups to say they «don’t trust medical research.» And they are more than twice as likely as other racial or ethnic groups to say they «might not be treated fairly.»

As noted in the 2021 Facts and Figures report, health and socioeconomic disparities and systemic racism contribute to increased Alzheimer’s and dementia risk in communities of color. According to the report, older Blacks and Hispanics are also disproportionately more likely to have Alzheimer’s and other dementias. In addition, both groups are more likely to have missed diagnoses than older Whites.

«We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer’s disease research and clinical trials,’ said Maria Carrillo, Ph.D., chief science officer, Alzheimer’s Association. «If trials do not include diverse participants, it is impossible to get a complete understanding of how racial and ethnic differences may affect the benefit and safety of potential treatments. Future clinical trial structures and recruitment efforts must lead to a better representation of the entire population, so everyone benefits from advances in Alzheimer’s and dementia research.»

Impact of COVID-19

The report also examines the devastating impact the COVID-19 pandemic is having on people living with Alzheimer’s. According to the report, there were at least 42,000 more deaths from Alzheimer’s and other dementias in 2020 compared with averages over the previous five years — a 16% increase.

The report highlights preliminary and anecdotal data indicating the COVID-19 pandemic is also having adverse effects on many family caregivers. It notes that pandemic-related caregiving challenges, including the shutdown of adult day care centers and the inability of families to visit or communicate with relatives in long-term care settings have caused «emotional distress and other negative outcomes among caregivers.» 

The Alzheimer’s Association and representatives from more than 30 countries have formed an international consortium to study the short- and long-term consequences of COVID-19 on the brain and nervous system in people at different ages, and from different genetic backgrounds.

2021 Alzheimer’s Disease Facts and Figures: At a Glance

Prevalence, Incidence and Mortality

• An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s dementia in 2021.
• More than 1 in 9 people (11.3%) age 65 and older has Alzheimer’s dementia.
• Two-thirds of Americans over age 65 with Alzheimer’s dementia (3.8 million) are women.
• Deaths due to Alzheimer’s between 2000 and 2019, has more than doubled, increasing 145%.
• 1 in 3 seniors dies with Alzheimer’s or another dementia.

Caregiving

• In 2020, more than 11 million caregivers of people with Alzheimer’s or other dementias provided an estimated 15.3 billion hours of unpaid care, a contribution to the nation valued at $257 billion.
• Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.
• Approximately two-thirds of caregivers are women, and one-third of dementia caregivers are daughters.
• Forty-one percent of caregivers have a household income of $50,000 or less.

Cost of Care

• In 2021, total payments for all individuals with Alzheimer’s or other dementias are estimated at $355 billion (not including unpaid caregiving).
• Medicare and Medicaid are expected to cover $239 billion or 67% of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $76 billion.
• Total payments for health care, long-term care and hospice care for people with Alzheimer’s and other dementias are projected to increase to more than $1.1 trillion in 2050.
• The total lifetime cost of care for someone with dementia is estimated at $373,527.

Additional data from the report is included below. Full text of the 2021 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, «Race, Ethnicity and Alzheimer’s in America,» can be viewed at alz.org/facts. The report will also appear in the March 2021 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

Other Key Findings from «Race, Ethnicity and Alzheimer’s in America:»

• Concern about developing Alzheimer’s is lower among Native Americans (25%), Blacks (35%) and Hispanics (41%), especially when compared with Whites (48%).
• More than one-third of Native Americans (35%) and nearly 3 in 10 Hispanics (28%) do not believe they will live long enough to develop Alzheimer’s or another dementia.
• More than half of non-White Americans believe significant loss of memory or cognitive abilities is «a normal part of aging.»
• Hispanic, Black and Native Americans are twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems.
• One in 5 Black (21%) and Hispanic Americans (20%) say they would feel insulted if a doctor suggested a cognitive assessment.
• Nearly 2 in 3 caregivers (64%) across all groups say that caregiving is stressful, but nearly all (92%) say caregiving is rewarding as well.

Updated Alzheimer’s Statistics

The Alzheimer’s Association Facts and Figures report also provides an annual look at the latest national statistics and information on Alzheimer’s prevalence, incidence, mortality and morbidity, costs of care and caregiving, both nationally and state-by-state.  

About 2021 Alzheimer’s Disease Facts and Figures 

The Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.

About the Survey

Versta Research conducted two surveys on behalf of the Alzheimer’s Association: (1) U.S. adults and (2) current or recent caregivers of adults age 50 or older with cognitive issues. Respondents were asked about access to care and support services, trust in providers and the health care system, participation in clinical trials and research, and caregiver experiences. Surveys were conducted October 26 – November 11, 2020. Data was collected by NORC at the University of Chicago via the AmeriSpeak^® panel. AmeriSpeak is a probability-based panel of all U.S. households. 

The survey included 945 White respondents. Oversamples of Hispanic (n=541), Black (n=515) and Asian Americans (n=412) were weighted back to their true population proportions for statistical analysis and reporting. For full inclusion of Native Americans, the same survey was administered to an additional sample of 406 Native Americans recruited through online (non-probability) panels with sampling stratified and data weighted on gender, age, income and education to match U.S. Census Bureau data. The surveys were offered in both English and Spanish. For complete details regarding survey methodology, see page 73 of the report.

About the Alzheimer’s Association

The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia. For more information, visit alz.org or call the 24/7 Helpline at 800.272.3900.

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SOURCE Alzheimer’s Association

CHICAGO, March 2, 2021 /PRNewswire/ — Findings from two national surveys appearing in the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report reveal that discrimination is a barrier to Alzheimer’s and dementia care. More than one-third of Black Americans (36%), and nearly one-fifth of Hispanic Americans (18%) and Asian Americans (19%), believes discrimination would be a barrier to receiving Alzheimer’s care. In addition, half or more of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient.

The 2021 Facts and Figures report provides an in-depth look at the latest national statistics on Alzheimer’s prevalence, incidence, mortality, costs of care and impact on caregivers. For the first time, the accompanying special report, «Race, Ethnicity and Alzheimer’s» examines perspectives and experiences of Asian, Black, Hispanic, Native and White Americans in regard to Alzheimer’s and dementia care.

Findings in the report, reveal that non-White racial/ethnic populations expect and experience more barriers when accessing dementia care, have less trust in medical research and are less confident that they have access to health professionals who understand their ethnic and racial background and experiences. Among the findings:

• Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias. Likewise, 2 in 5 Native Americans (40%) and Hispanic Americans (39%) believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans (34%).
• Nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%) and Hispanic Americans (36%) as well. Only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity.
• Fewer than half of Black (48%) and Native Americans (47%) feel confident they have access to providers who understand their ethnic or racial background and experiences, and only about 3 in 5 Asian Americans (63%) and Hispanics (59%) likewise feel confident.

«Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,» said Carl V. Hill, Ph.D., MPH. chief diversity, equity and inclusion officer, Alzheimer’s Association. «Clearly, discrimination, lack of diversity among health care professionals and mistrust in medical research create significant barriers to care and demand the country’s full attention.»

Episodes of discrimination, however, extend beyond Alzheimer’s and dementia care, the Alzheimer’s Association surveys found that many non-White Americans say they have experienced discrimination in the broader health care system. Specifically:

• Half of Black Americans (50%) report they’ve experienced discrimination when seeking health care; more than 4 in 10 Native Americans (42%) and one-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced health care discrimination.

The experiences and views of discrimination expressed by respondents in both surveys are also reflected in their views on clinical trial participation.

Black Americans have less interest in clinical research trials to prevent or slow the progression of Alzheimer’s disease. White Americans are most likely to express interest (82%), followed by Native Americans (81%), Hispanic Americans (78%), Asian Americans (73%) and lastly, Black Americans (67%).

The most common reason cited for not participating in clinical trials among all racial/ethnic groups is not wanting to be a «guinea pig.» This sentiment was especially strong among Black Americans (69%). In addition almost half of Black Americans (45%) worry that treatments might cause sickness. They are also twice as likely as other groups to say they «don’t trust medical research.» And they are more than twice as likely as other racial or ethnic groups to say they «might not be treated fairly.»

As noted in the 2021 Facts and Figures report, health and socioeconomic disparities and systemic racism contribute to increased Alzheimer’s and dementia risk in communities of color. According to the report, older Blacks and Hispanics are also disproportionately more likely to have Alzheimer’s and other dementias. In addition, both groups are more likely to have missed diagnoses than older Whites.

«We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer’s disease research and clinical trials,’ said Maria Carrillo, Ph.D., chief science officer, Alzheimer’s Association. «If trials do not include diverse participants, it is impossible to get a complete understanding of how racial and ethnic differences may affect the benefit and safety of potential treatments. Future clinical trial structures and recruitment efforts must lead to a better representation of the entire population, so everyone benefits from advances in Alzheimer’s and dementia research.»

Impact of COVID-19

The report also examines the devastating impact the COVID-19 pandemic is having on people living with Alzheimer’s. According to the report, there were at least 42,000 more deaths from Alzheimer’s and other dementias in 2020 compared with averages over the previous five years — a 16% increase.

The report highlights preliminary and anecdotal data indicating the COVID-19 pandemic is also having adverse effects on many family caregivers. It notes that pandemic-related caregiving challenges, including the shutdown of adult day care centers and the inability of families to visit or communicate with relatives in long-term care settings have caused «emotional distress and other negative outcomes among caregivers.» 

The Alzheimer’s Association and representatives from more than 30 countries have formed an international consortium to study the short- and long-term consequences of COVID-19 on the brain and nervous system in people at different ages, and from different genetic backgrounds.

2021 Alzheimer’s Disease Facts and Figures: At a Glance

Prevalence, Incidence and Mortality

• An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s dementia in 2021.
• More than 1 in 9 people (11.3%) age 65 and older has Alzheimer’s dementia.
• Two-thirds of Americans over age 65 with Alzheimer’s dementia (3.8 million) are women.
• Deaths due to Alzheimer’s between 2000 and 2019, has more than doubled, increasing 145%.
• 1 in 3 seniors dies with Alzheimer’s or another dementia.

Caregiving

• In 2020, more than 11 million caregivers of people with Alzheimer’s or other dementias provided an estimated 15.3 billion hours of unpaid care, a contribution to the nation valued at $257 billion.
• Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.
• Approximately two-thirds of caregivers are women, and one-third of dementia caregivers are daughters.
• Forty-one percent of caregivers have a household income of $50,000 or less.

Cost of Care

• In 2021, total payments for all individuals with Alzheimer’s or other dementias are estimated at $355 billion (not including unpaid caregiving).
• Medicare and Medicaid are expected to cover $239 billion or 67% of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $76 billion.
• Total payments for health care, long-term care and hospice care for people with Alzheimer’s and other dementias are projected to increase to more than $1.1 trillion in 2050.
• The total lifetime cost of care for someone with dementia is estimated at $373,527.

Additional data from the report is included below. Full text of the 2021 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, «Race, Ethnicity and Alzheimer’s in America,» can be viewed at alz.org/facts. The report will also appear in the March 2021 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

Other Key Findings from «Race, Ethnicity and Alzheimer’s in America:»

• Concern about developing Alzheimer’s is lower among Native Americans (25%), Blacks (35%) and Hispanics (41%), especially when compared with Whites (48%).
• More than one-third of Native Americans (35%) and nearly 3 in 10 Hispanics (28%) do not believe they will live long enough to develop Alzheimer’s or another dementia.
• More than half of non-White Americans believe significant loss of memory or cognitive abilities is «a normal part of aging.»
• Hispanic, Black and Native Americans are twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems.
• One in 5 Black (21%) and Hispanic Americans (20%) say they would feel insulted if a doctor suggested a cognitive assessment.
• Nearly 2 in 3 caregivers (64%) across all groups say that caregiving is stressful, but nearly all (92%) say caregiving is rewarding as well.

Updated Alzheimer’s Statistics

The Alzheimer’s Association Facts and Figures report also provides an annual look at the latest national statistics and information on Alzheimer’s prevalence, incidence, mortality and morbidity, costs of care and caregiving, both nationally and state-by-state.  

About 2021 Alzheimer’s Disease Facts and Figures 

The Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.

About the Survey

Versta Research conducted two surveys on behalf of the Alzheimer’s Association: (1) U.S. adults and (2) current or recent caregivers of adults age 50 or older with cognitive issues. Respondents were asked about access to care and support services, trust in providers and the health care system, participation in clinical trials and research, and caregiver experiences. Surveys were conducted October 26 – November 11, 2020. Data was collected by NORC at the University of Chicago via the AmeriSpeak^® panel. AmeriSpeak is a probability-based panel of all U.S. households. 

The survey included 945 White respondents. Oversamples of Hispanic (n=541), Black (n=515) and Asian Americans (n=412) were weighted back to their true population proportions for statistical analysis and reporting. For full inclusion of Native Americans, the same survey was administered to an additional sample of 406 Native Americans recruited through online (non-probability) panels with sampling stratified and data weighted on gender, age, income and education to match U.S. Census Bureau data. The surveys were offered in both English and Spanish. For complete details regarding survey methodology, see page 73 of the report.

About the Alzheimer’s Association

The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia. For more information, visit alz.org or call the 24/7 Helpline at 800.272.3900.

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SOURCE Alzheimer’s Association