Alzheimer’s Disease: Communication Techniques for Caregivers

(Alzfdn.org)

“It’s not what you say, but how you say it.”

This expression holds doubly true when communicating with individuals with dementia. Alzheimer’s disease or related illnesses impair a person’s ability to understand words and to speak. However, they can still benefit from non-verbal communication—body language, voice tone and facial expressions. As the individual’s ability to process verbal information declines, the importance of how caregivers communicate with them, verbally and non-verbally, increases.

Here are some tips to enhance interactions:

  • Remember that the individual with dementia might be feeling confused, anxious, irritable and depressed, and suffering from low self-esteem.
  • Speak clearly, slowly, and in a calm and friendly tone.
  • Be aware of body language. Individuals with dementia are very receptive to body language. They are often able to detect if a person’s body language depicts happiness, anger or other emotions, and then mimic the cues they see. If a frustrated caregiver, for example, gives off a certain negative energy, the individual with the disease might mirror back the emotion and respond with an equal amount of anger or impatience.
  • Use visual cues, pointing to things to show what you mean. Instead of saying, “Please brush your teeth,” pick up the toothbrush and demonstrate, for instance.
  • Make certain that the person with dementia has the best chance of seeing and hearing you. This involves checking that the person is wearing glasses and hearing aids, if necessary, and that talking occurs in a quiet environment.
  • Approach the individual from the front. An unexpected touch or drawing near from behind may startle and upset the person.
  • Before asking the individual to do something, address the person by name to get his attention. While you are speaking, maintain eye contact to help him focus.
  • Ask only one question at a time and allow time for an answer. If he does not seem to understand, repeat the question using the same wording. If this does not work, after a few minutes, rephrase it.
  • Allow the individual adequate time to respond in conversation or when performing an activity. Rushing will increase confusion.
  • If the individual repeatedly asks a question, keep in mind that he cannot remember the response you have just given him. Instead of answering the question after a second or third repetition, reassure the individual in some way-everything is fine, you will be with him, you will help him.
  • Eliminate distractions, such as the TV or radio, when talking to the person with dementia.
  • Avoid statements that sound negative. For example, instead of “Don’t go outside,” say, “Stay inside.”
  • Use humor whenever possible, though not at the individual’s expense.
  • Break down all tasks into simple steps. Tell the individual one step at a time what to do. Giving too many directions at once or too quickly will increase confusion. If the individual gets upset and becomes uncooperative, stop and try again later.
  • Keep on talking, even when a person may no longer be verbal. Chat about things that mattered to the person and mention names of family and friends. Even if communication is one-sided, it can loudly show that you care.

Communication also plays a big role in behavior management.

  • Assess the situation. Once you have observed the person’s behavior, try to find out what might have caused it. Ask yourself questions such as “Why is my loved one upset?” or “What happened in the last few minutes that could have prompted this behavior?” Also, do a basic evaluation to cover all your bases: consider that the person could be cold, hungry, in pain, bored, threatened, sleepy, frightened, etc. Once you assess the root cause of this behavior, you can communicate accordingly.
  • Offer comfort. Caregivers can provide comfort or reassurance through validation—a technique that allows the person to stay in the moment without being proven wrong or brought back to reality. For instance, if an older man becomes upset because he cannot find his mother, an effective response might be: “I know you miss your mother very much, and she loves you too. You were always your mother’s pride and joy.” This will help the individual feel understood and safe.
  • Distraction is a powerful tool that diverts a person’s attention and can help minimize disruptive behaviors. Since individuals with dementia have a very small window of short-term memory, changing the subject will help the individual focus on something positive while leaving sadness or anger behind. Any distraction topic could work, as long as it is pleasant for the individual with the illness. This could range from the weather outside, to the painting on the wall, to the wedding story that the individual loves to tell over and over again. During a state of agitation, a caregiver might say “I can tell you are upset, but always know that your family loves you dearly. In fact, we really miss those family dinners we had every Sunday. Why don’t you tell me all about that time you surprised us with a pot roast?”

For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers. Click here or call 866.232.8484. Real People. Real Care.

Citation

http://www.alzfdn.org/EducationandCare/techniques.html

©2016 Alzheimer’s Foundation of America. All rights reserved.

 

Talking With Your Parents About Independent Living

(AARP) Your parents might have lived in their home for decades, so it’s understandable that they are not eager to move to a new place when they get older. Even if the house is getting difficult to maintain or doesn’t meet their needs, there are years of memories there. Change can be hard.

t’s good to talk with your parents while they are still healthy about what might be needed to remain living independently — often parents and loved ones find some peace of mind in discussing those issues when things are going well. If you wait until a crisis occurs, you will have to make decisions quickly and you might not know your loved one’s wishes.

Many adult children don’t know how to bring up the subject of independent living with their parents. Here are some tips for starting this difficult dialogue, keeping focused and dealing with resistance.

Beginning the Conversation

Raise the issues indirectly
Mention a friend’s mother who recently hired in-home help, or an article that you read about programs at a nearby senior center. Example: “Is that something that you might be interested in learning more about?”

Find small ways to bridge the issue
Example: “I know you’re taking pills for arthritis, your heart and cholesterol. Would it help if you had one of those medication organizers you can buy in the drugstore?”

Share your own emotions
Example:  “Dad, it’s hard for me to see you slowing down and I know you’ve always prided yourself on being independent. I imagine it’s difficult for you to ask for help, but what are some things that we can do?”

Set the right tone
Once the topic has been brought up, listen to how your parents feel about their current needs, concerns, worries and hopes for the future. Don’t guess or make assumptions about your parents’ preferences. Ask open-ended questions that get them to express their perceptions.

Use communication that states your concern and avoids criticism
Example: “I’m feeling concerned that you may fall coming down the stairs. I could put a 100-watt bulb at the bottom of the stairs and install a handrail.” Don’t say: “Going upstairs in your condition is ridiculous. You’re sure to fall.”

Avoid role reversal
Helping out doesn’t mean you are “parenting” your parents. The most productive interactions come when parents and adult children are equal in the relationship.

Focus on These Key Issues

While each situation is unique, here are some common issues that can affect an older person’s ability to remain independent that you may want to discuss as your parents’ situation changes.

Where they live
Ask: Is your home still appropriate for your needs?
Are there any safety hazards in the house that could be removed?
Have you thought about eventually living somewhere else?

Their everyday activities
Ask: Do you need help with household chores?
Does impaired vision interfere with your cooking?
Can you hear a knock at the door or the telephone ring?

How they get around
Ask: Do you feel comfortable driving?
Would you like me to take you to your doctor appointments?
Are there vans or discounted senior taxi services you could use for shopping or to get to religious services?

Their health
Ask: Are your prescriptions current?
Have you been to your doctor lately? What did he or she say about your health?

Their finances
Ask: What are your current bills like and can you cover everything you need?
Have you thought about how you might need money in the future to help pay for assistance with everyday activities you might not be able to do yourself?
Would it be useful to consult with a financial planner?

How they pay for health care
Ask: What kind of health insurance do you have? Has it paid your health care bills so far? Do you have any questions about Medicare or Medicaid?

Dealing with Resistance

Your parents may not want to talk about these issues. Some resistance is normal.

  • Respect your parents’ feelings when they make it clear they want to avoid a subject. Try again later using another approach.
  • Consider pushing the issue if your parents’ health or safety is at risk. While your parents have a right to be in charge of their own lives, some crisis situations — such as health care expenses depleting a bank account — may call for you to intervene. If so, act firmly but with compassion.
  • Involve other family members or friends. You may want to hold a family meeting where everyone can discuss concerns and develop a plan to help.
  • Find out about community resources to help your parents remain independent, such as transportation or home health care, and share the options with them.
  • Be prepared to let your parents make their own life choices, even if you don’t agree with them. You should set your own limits as to how involved you can be. If the living situation is unsafe, you may need to bring in a third party to intervene.
Citation

http://www.aarp.org/home-family/caregiving/info-05-2012/talking-about-independent-living.html

Copyright 2017 AARP

 

Medios para una comunicación eficaz para proveedores de atención médica y cuidadores

(Family Caregiver Alliance) Cuando un ser querido necesita atención médica, tradicionalmente recurrimos a profesionales para despejar dudas, obtener un diagnóstico certero y opciones de tratamiento. En el pasado, los médicos eran la autoridad indiscutible que llevaba la voz cantante en las discusiones con sus pacientes sobre atención médica. Pero las cosas han cambiado, y la relación con el médico también.

Dada la gran cantidad de información y recursos que se ofrecen en línea, los pacientes y sus cuidadores pueden informarse, buscar especialistas, investigar sobre enfermedades, medicamentos y tratamientos, explorar alternativas, saber qué han hecho otros en una situación similar, entre otras cosas. Por su parte, los profesionales de atención médica tienden a formar una alianza con sus pacientes y cuidadores para optimizar el tratamiento y la atención.

En su calidad de cuidador y representante de un ser querido, usted desempeña un papel fundamental en esta alianza. Es probable que usted sea quien recabe información, hable con los médicos, traslade al paciente, garantice que se realicen todos los análisis de laboratorio, acompañe al paciente, prepare y administre medicamentos, investigue opciones de tratamiento, se ocupe de las cuestiones administrativas del seguro médico y de un sin fin de otras tareas relacionadas. En este folleto administrativo le presentamos algunos consejos para eliminar obstáculos y promover una comunicación eficaz con el médico y otros profesionales de la salud.

Preparación para la consulta con el médico

Una pequeña preparación ayuda a que la interacción con el personal médico sea más eficaz. Estos son consejos que pueden resultar útiles:

  1. Redacte una lista de sus preocupaciones por orden de prioridad. Sea franco y directo. ¿Ha observado nuevos síntomas que le preocupan? ¿Reacciones a medicamentos? ¿Alguna duda sobre una próxima cirugía? ¿Preocupado por la prognosis para el futuro y cómo puede seguir ofreciendo la mejor atención? Incluya temas delicados como la incontinencia, aun cuando le resulte incómodo abordar estas cuestiones. No siempre es posible despejar todas las dudas en una sola consulta, por este motivo le aconsejamos preguntar primero sobre los temas más acuciantes.
  2. Reúna todos los medicamentos que toma su ser querido y llévelos a la consulta o bien, confeccione una lista de los medicamentos que incluya también las dosis. Incluya los medicamentos recetados, los de venta libre, las hierbas medicinales y las vitaminas.
  3. Lleve consigo la información sobre el plan de seguro y el nombre de otros profesionales de atención médica que hayan tratado recientemente a su ser querido.
  4. Lleve consigo un dispositivo de grabación o un anotador y un bolígrafo para tomar nota de la información que le suministre el médico, de modo que pueda tenerla como referencia y compartirla con los miembros de la familia o pareja después de la consulta. Puede resultar útil llevar un calendario de bolsillo o un dispositivo móvil (smart phone o tableta) con calendario para agendar futuras consultas en el momento. La aconsejamos que le comunique al médico de su intención de registrar la entrevista y confirmar que el médico está de acuerdo con ello.
  5. Averigüe qué permisos deben quedar documentados en la historia clínica de modo un profesional de atención médica pueda compartir información con usted. (Véase la información HIPAA siguiente.)

Preguntas para realizar en la consulta médica

  • ¿Cuál es el diagnóstico? ¿Se trata de una dolencia permanente o reversible? ¿Es progresiva (es decir, ¿va a empeorar?)? ¿Cuál es la causa de esta enfermedad? Recuerde que es posible que el médico haya informado de esta enfermedad varias veces a otros pacientes, es decir que para él es una situación de rutina, pero no para usted, y que puede resultarle confuso o perturbador oírlo. Haga tantas preguntas como necesite para comprender el diagnóstico.
  • ¿Cuáles son los tratamientos disponibles? ¿Cuáles son los beneficios o riesgos? ¿Por qué es éste el enfoque preferido, y cuál es la probabilidad de beneficio (éxito)?
  • ¿Cuáles son los efectos secundarios de la medicación recetada? ¿El seguro cubre la medicación? De no ser así, ¿hay algún otro medicamento aprobados por el panel igual de efectivo que lo reemplace? ¿Existe alguna alternativa más económica? ¿Este medicamento está contraindicado para los medicamentos que ya toma el paciente? ¿Cómo se lo debe administrar (intervalos, con las comidas o fuera de ellas, por cuánto tiempo)? ¿Cuándo se verán los resultados?
  • ¿Qué nos permitirá saber este análisis? ¿Qué es? ¿Cuáles son los riesgos o efectos secundarios? ¿Es absolutamente necesario? ¿Cuándo se verán los resultados? ¿El seguro cubre el costo?
  • ¿Es necesario concertar una consulta de seguimiento? ¿Cuál es la mejor manera de comunicarse con usted si tengo alguna duda? ¿Usted (el médico) contesta los mensajes de correo electrónico?
  • ¿Es necesario ver a un especialista? ¿Cuáles son nuestras opciones para obtener una segunda opinión?

En el hospital o en la sala de emergencias

  • Si su ser querido es ingresado en el hospital, probablemente será revisado por los “médicos de guardia” del hospital y no por el médico que lo atiende habitualmente. Lo más probable es que no cuenten con ninguna información sobre la persona que usted cuida, su historia clínica ni de las enfermedades que padece más allá de lo que indique el informe de admisión. Usted, por su condición de cuidador, tendrá que informarles de los antecedentes médicos, las reacciones alérgicas, enfermedades crónicas, síntomas y otros datos especiales. También tendrá que suministrar esta y otra información a enfermeros, terapistas físicos, dietistas y demás profesionales. Aun cuando el hospital cuente con información digital compartida, es posible que deba repetir sus preguntas si no puede estar presente en el hospital cuando los médicos realicen sus rondas, solicite a un enfermero que le pida al médico a cargo que lo llame para ponerlo al tanto del estado de su ser querido. Cuando llame el médico, tome nota del nombre y averigüe cómo comunicarse con él si fuera necesario. Asegúrese de que todos tengan sus número de teléfono particular y/o de teléfono móvil.
  • Averigüe cuánto tiempo permanecerá su ser querido en el hospital, y comience a averiguar cómo se planificará el alta tan pronto como sea posible durante la estadía en el hospital.
  • Trate de informarse si existe alguna POLST (Orden médica para tratamientos para el sostén vital) u otro documento vigente respecto de medidas de sostén vital o si se ha tomado alguna decisión sobre la terminación de la vida.
  • Designe un sola persona para sea el nexo de comunicación con el médico y el resto de la
  • familia. Una cantidad de sitios web le permitirán formar un grupo para recibir actualizaciones del estado de su ser querido, como por ejemplo,
  • www.LotsaHelpingHands.com, CaringBridge.org.
  • Si el médico de cabecera de su ser querido acepta recibir mensajes de correo electrónico, podría comunicarse con él para informar a los demás que su ser querido está internado en el hospital y el motivo de la internación. De no ser así, podría haber cierta demora en recibir esa información.
  • Si la persona a su cuidado tiene algún trastorno de la memoria, asegúrese de informar de ello al personal del hospital, de modo que no le comuniquen solo él detalles médicos importantes ni tampoco el historial de medicamentos. Tenga en cuenta que quienes padecen Alzheimer u otra enfermedad cognitiva suelen estar más confundido y desorientados que lo habitual cuando están internados en el hospital.
  • Asegúrese de comprender todas las instrucciones cuando le den el alta a su ser querido. Solicite que le suministren todas las instrucciones y consejos por escrito.
  • Por ser el representante de su ser querido, usted tiene derecho a apelar la decisión de darle el alta si considera que es un decisión apresurada. Lo primero que debe hacer es hablar con el médico o el planificador de altas y hacerle saber su inquietud. Si con eso no basta, tendrá que comunicarse con Medicare, Medicaid o con su compañía de seguro. Las apelaciones formales se gestionan por medio de la Organización de mejora de la calidad de atención centrada en el beneficiario y la familia (BFCC-QIO, por sus siglas en inglés). Para obtener el número de teléfono de su BFCC-QIO, visite www.Medicare.gov/contacts, o llame al 1-800-MEDICARE.

Transición al hogar o a una institución: comunicaciones al momento del alta

DEL HOSPITAL AL HOGAR

  • Debe contar con documentos de alta legibles escritos en su idioma principal; el planificar de altas debe repasarlos con usted.
  • Si su ser querido vuelve a su casa ¿quién estará allí para ayudarle? Si usted tuviera alguna limitación física, trabaja, tiene que cuidar a sus hijos o algún otro factor que le impidiera atender a su ser querido, comuníqueselo al personal de alta. Puede contar con la asistencia de enfermeros, terapistas físicos u ocupacionales o de otros auxiliares en el hogar. Solicite información sobre cómo se pagan estos servicios.
  • ¿A qué posibles problemas relacionados con la recuperación de su ser querido debe estar atento?
  • ¿Debe utilizar algún dispositivo respecto del cual deba recibir alguna capacitación? ¿Es necesario que deba recibir capacitación para la realización de ciertas técnicas como medición de la presión arterial, mantenimiento de tubos de alimentación o catéteres, cuidado de heridas, uso de respiradores, aplicación de inyecciones o traslado del paciente de la cama a la silla? Solicite una capacitación completa de modo que pueda ofrecer la mejor atención en el hogar.
  • ¿Tiene alguna duda respecto de los nuevos medicamentos que necesitará su ser querido y de la forma de administrarlos? (Los errores en la medicación son el motivo principal de reingreso en el hospital.) ¿Tiene información sobre los posibles efectos secundarios?
  • ¿Su ser querido debe seguir alguna dieta especial?
  • ¿Tiene algún número de teléfono para comunicarse con el personal de atención médica en caso de que tenga alguna duda después de que su ser querido haya sido dado de alta? ¿Hay alguien disponible para hacerle preguntas todos los días, las 24 horas?
  • ¿Ha programado una consulta de seguimiento con el médico de cabecera de su ser querido?

DEL HOSPITAL AL CENTRO DE REHABILITACIÓN (REHAB) U OTRA INSTITUCIÓN

  • ¿Cómo se seleccionará la institución? ¿Presta una atención de alta calidad? (Puede consultar las calificaciones en el sitio web de comparación de centros de convalecencia de Medicare.)
  • ¿Los familiares y cuidadores cuentan con medios de transporte a la institución?
  • ¿Necesitará un intérprete?
  • ¿Cómo y cuándo se comunicará a la institución la información sobre el paciente?
  • ¿Qué comunicación se establecerá entre el hospital (o la sala de emergencias), la institución y el médico de cabecera?
  • ¿Se sabe aproximadamente cuánto tiempo deberá permanecer en la institución su ser querido? (Medicare cubre en general 20 días de atención cuando el paciente es conducido directamente a la institución una vez dado de alta del hospital.)
  • ¿Cuál es el nombre del médico que supervisará a su ser querido en la institución?
  • ¿Existe algún gerente de cuidado con el que pueda hablar si tiene alguna duda?

Cuestiones legales que afectan al cuidador

HIPAA: Ley de Transferencia y Responsabilidad de Seguro Médico

Es posible que haya oído hablar de las restricciones de HIPAA. HIPAA rige el impacto que implica compartir información sobre pacientes en la atención médica. Si bien cuando se promulgó la ley hubo cierta confusión respecto de cuánta información podían recibir los familiares y cuidadores sobre la situación médica del paciente, ahora se sabe con claridad qué información se debe compartir. El Departamento de salud y servicios de humanos de EE.UU. establece: Si el paciente está presente y está en condiciones de tomar decisiones sobre la atención médica, un profesional de atención médica podrá discutir la información médica del paciente con un familiar, amigo u otra persona si el paciente está de acuerdo o dada la oportunidad de hacerlo no se opone. Un proveedor de atención médica también puede compartir información con esas personas si, según su criterio profesional, entiende que el paciente no se opone. En cualquiera de los casos, el profesional de atención médica solo podrá compartir o discutir la información que esa persona necesita saber sobre el cuidado del paciente o de los pagos relativos al cuidado. En particular, si usted ha sido designado en las Instrucciones anticipadas, no habrá ningún problema en que reciba información sobre su ser querido o lo represente. Verifique que en la historia clínica del paciente haya una copia actualizada de las Instrucciones anticipadas.

Instrucciones anticipadas sobre la salud

Estos documentos establecen quién representa al paciente si éste no puede actuar por sí mismo. En ellos se indica qué tipo de atención el paciente desea recibir si está muy enfermo o agonizante. (También se los puede llamar testamento vital, poder para cuestiones relativas a la salud, etc) Estos documentos solo se pueden completar cuando el paciente es competente (es decir, no está demente). Muchos consultorios u hospitales disponen de los formularios correspondientes.

Derecho a contar con un intérprete

En Estados Unidos se hablan más de 200 idiomas y aproximadamente 25 millones de personas hablan inglés con un nivel inferior a “muy bueno”. Sabemos que es difícil comprender información médica compleja aun cuando uno hable bien en inglés. Para aquellos cuya lengua principal no es el inglés, y el médico no habla su idioma, la compresión no solo resulta difícil sino imposible, y la falta de comprensión pone en riesgo la vida. Afortunadamente, de conformidad con la Ley de Derechos Civiles de 1964, el paciente tiene derecho a contar con los servicios de un intérprete, incluso en idioma de señas, en situaciones de atención médica.

Si bien existen programas nacionales de certificación que garantizan la idoneidad del intérprete para traducir terminología médica/de atención médica, la disponibilidad de interpretes varía en gran medida entre los distintos estados. Algunas familias recurren simplemente a un pariente para que oficie de intérprete, pero a menos que esté familiarizado con la terminología médica, no sería la mejor opción en los casos en que la información sea. compleja y se deben tomar decisiones respecto del tratamiento. Asegúrese de solicitar los servicios de un intérprete si fuera necesario.

Recomendaciones adicionales para maximizar la comunicación con los profesionales de atención médica

  • A muchos cuidadores les resulta útil llevar un registro de datos médicos (sea en papel o electrónico) de la persona a su cuidado. En él deben constar fechas, actividades, síntomas, tratamientos, visitas al médico, visitas a la sala de emergencias, futuras citas con el médico, medicamentos y cualquier otra información que ayude al médico a hacer un seguimiento de la salud del paciente. También incluye información tomada de la web y preguntas para la próxima visita o conversaciones con el médico.
  • Respecto de la información médica en Internet: recuerde que no toda la información es igual. Algunos sitios venden productos; algunos autores no cuentan con credenciales legítimas, algunos sitios o grupos solo se refieren a los malos resultados o complicaciones o se valen de pruebas de “curas” no comprobables. Obtenga información de sitios gubernamentales importantes (por ejemplo, National Institutes of Health, National Institute on Aging, MedLine), organizaciones sin fines de lucro sobre enfermedades específicas; facultades de medicina o centros de atención médica de renombre (p. ej., Mayo Clinic, Johns Hopkins, Kaiser Permanente) u otras fuentes reconocidas de información médica de calidad.
  • Los errores en la medicación son una causa común de reingreso en el hospital, y a veces estos errores son producto de una comunicación ineficiente. Muchos medicamentos funcionan distinto en los ancianos que en los jóvenes. Es importante contar con una explicación completa de por qué, cómo, cuánto y cuándo se deben tomar los medicamentos e informar al médico de cualquier efecto secundario o reacción. Si su ser querido sufre de demencia, mantenga todos los medicamentos bajo llave en un lugar seguro. Los farmacéuticos son una buena fuente de información sobre la interacción medicamentosa y efectos secundarios. Los dispensadores de pastillas y pastilleros diarios pueden ayudar a los cuidadores, agotados por todas las tareas que deben realizar, a mantenerse organizados.
  • Si no está conforme con la atención, sea porque no responden a sus llamadas, porque la persona de informes tiene malos modales, no se da respuesta a sus preocupaciones o recibe instrucciones de tratamiento poco claras, exprese sus necesidades de forma directa. Si bien los profesionales de atención médica son objeto mucha presión, si su ser querido no recibe la atención que necesita, usted tiene todo el derecho de quejarse. Si está preocupado por la atención recibida en un centro de rehabilitación o de convalecencia, comuníquese con el representante del ciudadano: theconsumervoice.org/get_help.
  • Usted tiene un objetivo común con la mayoría de los profesionales de atención médica y del personal de las distintas instituciones: recibir tratamientos y atención de excelencia. Cuanto mejor sea la comunicación, mayor será la posibilidad de recibir atención de calidad y de obtener la respuesta que está buscando.

Recursos

Family Caregiver Alliance
National Center on Caregiving

785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
Sitio web: www.caregiver.org
Correo electrónico: info@caregiver.org

Family Caregiver Alliance (FCA) se propone mejorar la calidad de vida de los cuidadores mediante la educación, los servicios, la investigación científica y la protección de sus intereses.

El National Center on Caregiving (FCA) ofrece información actualizada sobre problemas de carácter social, políticas públicas y cuidado a los pacientes, y también brinda ayuda para la elaboración de programas públicos y privados relacionados con los cuidadores, y asiste a los cuidadores de todo el país en la búsqueda de recursos en su comunidad.

Para los residentes de la zona metropolitana de la bahía de San Francisco, la FCA proporciona servicios de apoyo familiar directo a los cuidadores de las personas con enfermedad de Alzheimer, accidente cerebrovascular, ALS, lesiones en la cabeza, enfermedad de Parkinson y otros trastornos cerebrales debilitantes que aquejan a los adultos.

FAMILY CARE NAVIGATOR

Creada por Family Caregiver Alliance, ésta una amplia guía en línea que permite a los cuidadores buscar servicios y programas en los 50 estados. Incluye una sección de preguntas frecuentes y un glosario.
https://caregiver.org/family-care-navigator

FOLLETOS INFORMATIVOS DE LA FCA (https://caregiver.org/fact-sheets)

Caregivers’ Guide to Medications and Aging

Hospital Discharge Planning: A Guide for Families and Caregivers

Making Decisions: What Are Your Important Papers?

OTROS

Medicare
1-800-MEDICARE (1-800-633-4227)
http://www.medicare.gov

MedlinePlus
1-888-FIND-NLM (1-888-346-3656)
1-800-735-2258 (TDD)
www.medlineplus.gov
Este sitio web de la National Library of Medicine cuenta con información sobre una variedad de enfermedades y dolencias, así como también descripciones de estudios médicos.

National Institutes of Health (NIH)
1-301-496-4000
1-301-402-9612 (TTY)
www.nih.gov
NIH, el organismo nacional de investigaciones médicas, realiza y apoya investigaciones sobre las causas, tratamientos y cura de enfermedades comunes y raras.

NIHSeniorHealth.gov
http://nihseniorhealth.gov
Este sitio web de NIA y de la National Library of Medicine, ambas pertenecientes a National Institutes of Health, ha sido especialmente diseñado para adultos mayores. Ofrece también videos cortos y un botón para agrandar el tamaño de la letra.

NIA Information Center
P.O. Box 8057
Gaithersburg, MD 20898-8057
1-800-222-2225
1-800-222-4225 (TTY)
www.nia.nih.gov
NIA ofrece información sin cargo tanto en inglés como en español, en línea e impresa. Ofrece un folleto, Talking to your Doctor: A Guide for Older People.
Folleto: http://www.nia.nih.gov/sites/default/files/talking-with-your-doctor-nia.pdf

National Institute on Aging (NIA, perteneciente a National Institutes of Health)
1-800-222-2225 (llamada gratuita)
1-800-222-4225 (TTY/llamada gratuita)
www.nia.nih.gov
Ofrece Advance Care Planning: Tips from the National Institute on Aging, End of Life: Helping With Comfort and Care, and Talking with Your Doctor: A Guide for Older People.
Departamento de salud y servicios sociales, Oficina de Derechos Civiles
Communicating with a Patient’s Family, Friends, or Others Involved in the Patient’s Care
Esta guía explica en qué oportunidades el profesional de atención de la salud está autorizado a compartir información médica sobre el paciente de conformidad con la Norma sobre privacidad de la Ley de transferencia y responsabilidad de seguro médico (HIPAA) de 1996.
www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/provider_ffg…

Next Step in Care
HIPAA: Questions and Answers for Family Caregivers
www.nextstepincare.org


Elaborado por Family Caregiver Alliance, revisado por Jean Coleman, Jean Coleman, R.N., M.S., N.P. (retirado) con fondos del Departmento de adultos y servicios para la ancianidad (DAAS, por sus siglas en inglés) de San Francisco. ©2015 Family Caregiver Alliance Reservados todos los derechos.

Citation

https://www.caregiver.org/medios-para-una-comunicacion-eficaz-para-proveedores-de-atencion-medica-y-cuidadores

Copyright © 1996–2016 Family Caregiver Alliance. All rights reserved.

 

How to Communicate Better with Someone Who Has Early-Stage Alzheimer’s

(Caring.com) It’s so easy to become frustrated when talking to someone with dementia or Alzheimer’s. It’s hard to know the “right” way to respond to the repetitive or odd things he sometimes says. You won’t be tongue-tied if you keep these simple communication techniques in mind.

How to Start a Conversation

When you want to start a conversation or ask a question, get the person’s attention in an obvious, direct way. Start by approaching him from the front and saying his name. This will help him focus on you and prevent catching him by surprise, which may set him on edge and make him less able to concentrate on the conversation. Someone who’s older may be somewhat deaf, and this direct approach also makes it easier for him to hear you.

Slow down your usual speaking style a bit. Enunciate your words to be as clear as possible. Also stay conscious of giving the person plenty of time to think about what you’ve said and to reply. Many people have a tendency to rush in and fill a silence with more words, which often only serves to agitate someone with Alzheimer’s or other dementias.

Another way you might need to alter your usual conversational style is to stick to common, plain words and short sentences whenever possible. (It’s like talking to a young child, though without using singsong baby talk.) Try to construct sentences that include only one main thought, ask only one question at a time, and give instructions one step at a time.

If the person doesn’t understand something you’ve said, repeat it exactly the way you said it the first time; that will give him more opportunities to figure it out. If you’ve asked a question that’s not connecting, ask it again the same way. Do this within reason, of course — if two or three repetitions fail, try rewording the message in different, simpler terms.

Rely on Nonverbal Communication

Words are only a part of the way that all humans communicate with one another. Facial expressions are especially important for someone who has trouble following a conversation and remembering what was just said. So try to face the person as much as possible, and look directly in his eyes.

You can also signal that you’re friendly, interested, and approachable with physical cues such as your facial expression, gestures, and posture. Smile or look concerned as you talk to underscore your message. Point to the thing you’re talking about; for example, point to the kitchen as you say, “Lunch is ready.” Use other gestures such as shaking or cocking your head or raising your hands palms-up when asking a question. Beware of accidentally sending negative signals: a blank apathetic expression, brows knitted in frustration, crossing or folding your arms in front of you, and placing your hands on your hips.

Giving a gentle, encouraging touch can help guide the person when you give him instructions or when you’re trying to direct his attention to something. Don’t underestimate the benefit of physical affection when you talk, from touching his knee lightly to rubbing his back or ending a conversation with a kiss. All these gestures can help keep him feeling relaxed and less frustrated.

Your tone speaks louder than words, too. So try to keep your voice pleasant and inviting, not overly loud (unless deafness is a real issue). Be careful not to express anger or frustration — even when you’re reaching your limits.

Provide Conversational Crutches

You can improve verbal exchanges in lots of casual ways. Refer to people by their name and, when appropriate, their name and relationship to the person with Alzheimer’s (such as “your daughter, Anna”) rather than using pronouns such as “him” or &q uot;her.” Use simple, consistent labels for objects (“your white tennis shoes,” “the blue pillbox”) and avoid identifying things as “this” or “that.”

Stick to familiar, easy-to-understand topics, too. A person with Alzheimer’sor other forms of dementia is less likely to be confused if you talk about his favorite subjects or things he’s demonstrated he remembers or relates to well — the weather, what’s for lunch, the birds at the feeder, a ball game. Discussions that require abstract thinking or a great deal of concentration — politics and current events, for example — may prove too complicated.

Expect to carry the conversation yourself. It’s not that the person doesn’t like to chat, but initiating talk can be too much for him now. Also avoid asking too many open-ended questions, which may feel like “tests” of his memory — causing him to become frustrated and angry and want to withdraw from the conversation. A better solution is easier yes-or-no questions or those with limited multiple-choice answers: “Do you like the robins or the cardinals best?” Best of all is to mostly lead the discussion by providing information rather than asking for it: “I just saw a big squirrel climb into the bird feeder. Maybe we need to put more seed in there.”

Reduce background distractions, too. It’s easier to connect without the noise and commotion of a TV, radio, or crowd of people, for example.

Be Considerate of Gaffes

Inevitably the person you’re talking to will repeat the same conversation you just had a few minutes earlier. Above all, refrain from pointing this out. Memory lapses are a physical glitch beyond his control, and emphasizing his impairment is likely to make him feel embarrassed or frustrated. Instead, give simple, polite responses (even if they’re the same responses you just gave five minutes earlier). Alternately, if appropriate, redirect the conversation — but if he fixates on getting an answer from you, go ahead and give it. His insistence means the subject is important to him.

An occasional prompt is OK if he’s having trouble finding the right word or remembering something — but tread lightly. Frequent corrections, correcting in a critical or patronizing manner, or showing your disappointment or frustration all eat away at his self-esteem. Responding in these ways just makes him less likely to want to open up and communicate. Use his reactions as your guide. You may just choose to limit corrections to times when it’s absolutely necessary.

If you do need to intervene, use “I” statements: “I’m sorry. I’m just having trouble understanding today.” Putting the onus on you is far less intimidating than being told, “What do you mean? You’re not making sense.”

Other Helpful Tips

Humor is a vastly underrated way to keep the mood light and to encourage someone to open up. Don’t laugh at him, obviously, but make light of situations where it’s appropriate.

Even if you live nearby, cards and letters can be a concrete way of communicating instead of always relying on phone calls and in-person visits. People with Alzheimer’s-related memory problems often appreciate having a written record of what you’ve “said” to go back to, as it relieves them of the burden of trying to remember. Consider a spiral notebook or datebook in which you can jot down helpful items (whether they’re critical or not): “October 30. Mike raked leaves. Tomorrow is Halloween.”

Above all, have realistic expectations. Even early on in the disease process, someone with Alzheimer’s may occasionally use the wrong word, get confused, or forget what was said just a few minutes ago. Don’t let these slips rattle you. Such cognitive problems aren’t under his control, and probably already cause him considerable stress and frustration — he doesn’t need to see you upset as well.

Realize that language problems are likely to increase over time. Your patience and understanding now will help cut down on the frustration and irritability these changes create in the person you care about — and protect him against withdrawing from social situations.

Citation

https://www.caring.com/articles/how-to-communicate-with-alzheimers-patients

© Copyright 2007-2016 Caring, Inc. All Rights Reserved.

 

 

 

Alzheimer’s and Communication

(Alzheimer’s Association) Alzheimer’s disease and other dementias gradually diminish a person’s ability to communicate. Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. The strategies below can help both you and the person with dementia understand each other better.

Changes in Communication

Changes in the ability to communicate are unique to each person with Alzheimer’s. In the early stages of dementia, the person’s communication may not seem very different or he or she might repeat stories or not be able to find a word. As the disease progresses, a caregiver may recognize other changes such as:

  • Using familiar words repeatedly
  • Inventing new words to describe familiar objects
  • Easily losing his or her train of thought
  • Reverting back to a native language
  • Having difficulty organizing words logically
  • Speaking less often

Helping the Person with Alzheimer’s Communicate

People with Alzheimer’s and other dementias have more difficulty expressing thoughts and emotions; they also have more trouble understanding others. Here are some ways to help the person with Alzheimer’s communicate:

  • Be patient and supportive.
    Let the person know you’re listening and trying to understand. Show the person that you care about what he or she is saying and be careful not to interrupt.
  • Offer comfort and reassurance.
    If he or she is having trouble communicating, let the person know that it’s okay. Encourage the person to continue to explain his or her thoughts.
  • Avoid criticizing or correcting.
    Don’t tell the person what he or she is saying is incorrect. Instead, listen and try to find the meaning in what is being said. Repeat what was said if it helps to clarify the thought.
  • Avoid arguing.
    If the person says something you don’t agree with, let it be. Arguing usually only makes things worse — often heightening the level of agitation for the person with dementia.
  • Offer a guess.
    If the person uses the wrong word or cannot find a word, try guessing the right one. If you understand what the person means, you may not need to give the correct word. Be careful not to cause unnecessary frustration.
  • Encourage unspoken communication.
    If you don’t understand what is being said, ask the person to point or gesture.
  • Limit distractions.
    Find a place that’s quiet.The surroundings should support the person’s ability to focus on his or her thoughts.
  • Focus on feelings, not facts.
    Sometimes the emotions being expressed are more important than what is being said. Look for the feelings behind the words. At times, tone of voice and other actions may provide clues.

Best Ways for You to Communicate

While a person with later-stage Alzheimer’s may not always respond, he or she still requires and benefits from continued communication. When communicating with a person with dementia, it’s especially important to choose your words carefully.

  • Identify yourself.
    Approach the person from the front and say who you are. Keep good eye contact; if the person is seated or reclined, go down to that level.
  • Call the person by name.
    It helps orient the person and gets his or her attention.
  • Use short, simple words and sentences.
    Lengthy requests or stories can be overwhelming. Ask one question at a time.
  • Speak slowly and distinctively.
    Be aware of speed and clarity. Use a gentle and relaxed tone — a lower pitch is more calming.
  • Patiently wait for a response.
    The person may need extra time to process what you said.
  • Repeat information or questions as needed.
    If the person doesn’t respond, wait a moment. Then ask again.
  • Turn questions into answers.
    Provide the solution rather than the question. For example, say “The bathroom is right here,” instead of asking, “Do you need to use the bathroom?”
  • Avoid confusing and vague statements.
    If you tell the person to “Hop in!” he or she may interpret your instructions literally. Instead, describe the action directly: “Please come here. Your shower is ready.” Instead of using “it” or “that,” name the object or place. For example rather than “Here it is” say “Here is your hat.”
  • Turn negatives into positives.
    Instead of saying, “Don’t go there,” say, “Let’s go here.”
  • Give visual cues.
    To help demonstrate the task, point or touch the item you want the individual to use or begin the task for the person.
  • Avoid quizzing.
    Reminiscing may be healthy, but avoid asking, “Do you remember when … ?”
  • Write things down.
    Try using written notes as reminders if the person is able to understand them.
  • Treat the person with dignity and respect.
    Avoid talking down to the person or talking as if he or she isn’t there.
  • Convey an easygoing manner.
    Be aware of your feelings and attitude — you may be communicating through your tone of voice. Use positive, friendly facial expressions and nonverbal communication. For communication tips from other caregivers, join ALZConnected, our message boards and online support community. Every day, caregivers like you share new ideas and encourage one another.
Citation

http://www.alz.org/care/dementia-communication-tips.asp

Copyright © 2015  Alzheimer’s Association®. All rights reserved.

 

Conversation Starters for Talking with People with Dementia

(AboutHealth.com) Let’s imagine you’re going to visit your mother who has Alzheimer’s and lives in a nursing home, or your brother who’s at home with his wife but is quite confused and forgetful. Are you wondering how to pass the time there, or what you should say? Have you been holding off on visiting because you don’t know what to talk about? While not all of these strategies will be effective, here are some conversation starters and activities you can try during your visit.

Remember When?

Choose a memory from long ago to talk about, such as the vacations your family used to take together, or the day when the car broke down in the middle of the blizzard. Don’t quiz the person; rather, start out by saying that you had been thinking about that particular event and then share some of the details related to it, such as the fish you caught on that vacation or the type of car the family drove back in the day.

Address Book, Social Directory or School Yearbook

Find an old address book, church directory or school yearbook and go through the book together. Those names might trigger various memories for your loved one that she’ll enjoy talking about with you.

Photo Albums

Bring pictures that you can go through together. You may be surprised at how good his memory is for names and details of older photos.

Recipe Box or Book

Find your mother’s old, often-used recipes and bring them along on a visit. Reminisce together about her favorite ones to cook, as well as which ones made the family cringe when she made them. You could even make one of her favorites and bring some to her to enjoy, if her diet constraints allow.

Tell Me About When You First Fell in Love

Ask her to recall when she first met the person and fell in love, and what she liked most about him.

Read Together

Bring her favorite classic literature book or a book on faith that is meaningful to her. Read through familiar passages together.

Bring Items of Interest

Perhaps your brother has a longstanding hobby of collecting baseball cards.

Bring some along to look through and ask his opinion about the value and importance of the cards.

Bring Your Pet if Your Loved One Is an Animal Lover

If your mother loves cats, bring yours to visit her. The benefits of pet therapy are well-established so take the opportunity to encourage her in this way. Of course, if your loved one resides in a facility, be sure to check with them to learn what guidelines are in place for animal therapy.

Citation

http://alzheimers.about.com/od/communication/a/Conversation-Starters-For-Talking-With-People-With-Dementia.htm

Sources:

Dear Abby Column. Address book names unlock mother-in-law’s memories. http://www.uexpress.com/dearabby/?uc_full_date=20120108

© 2015 About.com — All rights reserved.

 

Alzheimer’s and Changes in Communication Skills

(NIH) Communication is hard for people with Alzheimer’s disease because they have trouble remembering things. They may struggle to find words or forget what they want to say. You may feel impatient and wish they could just say what they want, but they can’t.

The person with Alzheimer’s may have problems with:

  • Finding the right word or losing his or her train of thought when speaking
  • Understanding what words mean
  • Paying attention during long conversations
  • Remembering the steps in common activities, such as cooking a meal, paying bills, or getting dressed
  • Blocking out background noises from the radio, TV, or conversations
  • Frustration if communication isn’t working
  • Being very sensitive to touch and to the tone and loudness of voices

Help Make Communication Easier

The first step is to understand that the disease causes changes in communication skills.

The second step is to try some tips that may make communication easier:

  • Make eye contact and call the person by name.
  • Be aware of your tone, how loud your voice is, how you look at the person, and your body language.
  • Encourage a two-way conversation for as long as possible.
  • Use other methods besides speaking, such as gentle touching.
  • Try distracting the person if communication creates problems. To encourage the person to communicate with you:
    • Show a warm, loving, matter-of-fact manner.
    • Hold the person’s hand while you talk.
  • Be open to the person’s concerns, even if he or she is hard to understand.
  • Let him or her make some decisions and stay involved.
  • Be patient with angry outbursts. Remember, it’s the illness “talking.”

To speak effectively with a person who has Alzheimer’s:

  • Offer simple, step-by-step instructions.
  • Repeat instructions and allow more time for a response. Try not to interrupt.
  • Don’t talk about the person as if he or she isn’t there.
  • Don’t talk to the person using “baby talk” or a “baby voice.”

Be Direct, Specific, and Positive

Here are some examples of what you can say:

  • “Let’s try this way,” instead of pointing out mistakes.
  • “Please do this,” instead of “Don’t do this.”
  • “Thanks for helping,” even if the results aren’t perfect. You also can:
  • Ask questions that require a yes or no answer. For example, you could say, “Are you tired?” instead of “How do you feel?”
  • Limit the number of choices. For example, you could say, “Would you like a hamburger or chicken for dinner?” instead of “What would you like for dinner?”
  • Use different words if he or she doesn’t understand the first time. For example, if you ask the person whether he or she is hungry and you don’t get a response, you could say, “Dinner is ready now. Let’s eat.”
  • Try not to say, “Don’t you remember?” or “I told you.” If you become frustrated, take a timeout for yourself.

For more caregiving tips and other resources:

  • Read “Caring for a Person with Alzheimer’s Disease”: www.nia. nih.gov/alzheimers/publication/ caring-person-alzheimers-disease
  • Call the Alzheimer’s Disease Education and Referral (ADEAR) Center toll-free: 1-800-438-4380
Citation

https://d2cauhfh6h4x0p.cloudfront.net/s3fs-public/caregivingtips_communicationskills-final_7-18-12_0.pdf

National Institute on Aging

 

Alzheimer’s Communication and Behavior Problems: A Resource List

(NIH) Caregivers face a variety of challenges when a loved one develops Alzheimer’s disease or another dementia, including communicating with the memory-impaired person and responding to difficult behaviors. This resource list offers a selection of articles, books, videos, and other materials that may help.

Some resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online bookstores.

The items in this resource list are organized in three categories:

Communication Resources

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging (2013, 104 p.)

This free guide helps caregivers understand and cope with the many challenges of caring for people with Alzheimer’s disease. Among other topics, it provides caregiving strategies for coping with changes in communication skills and changes in personality and behavior, such as agitation, sleep problems, and hallucinations.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800- 438-4380. Email: adear@nia.nih.gov. Free online access.

Changes in Communication Skills (2012, 2 p.)

This 2-page tip sheet explains common communication problems in people with Alzheimer’s disease and how caregivers can help make communication easier. It gives specific examples of requests and questions caregivers can use and which ones to avoid.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Communicating (2009).

This online guide offers suggestions to improve communication with people who have Alzheimer’s disease. It explains how Alzheimer’s affects a person’s ability to communicate. It also provides guidelines for enhancing communication and specific tips for helping people with the disease express themselves and understand others.

Published by the Alzheimer’s Association, New York City Chapter. Phone: 1-646-744-2900. Email: helpline@alznyc.org. Free online access.

Communicating with Patients who Have Dementia (2013, 1 p.)

Learn what works and what doesn’t in this brief but informative tip sheet. Specific tips for communicating verbally and nonverbally with a person who has Alzheimer’s emphasize the importance of using simple, nonpatronizing language.

Published by the Arizona Geriatric Education Center. Free online access.

Communication: Tips for Successful Communication at All Stages of the Disease (2013, 8 p.)

This booklet suggests ways to improve two-way communication with a person with Alzheimer’s disease who has difficulty expressing thoughts and emotions and understanding others. The booklet provides additional suggestions for communicating with people who have hearing or visual limitations.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access.

Communication: Techniques

This online tip sheet has several tips for communicating with a person with Alzheimer’s disease or a related dementia. It discusses tone of voice, word choice, eye contact, body language, and more.

Published by the Alzheimer’s Foundation of America. Phone: 1-866-232-8484. Email: info@alzfdn.org. Free online access.

Creating Moments of Joy for the Person with Alzheimer’s or Dementia. 4th ed. (2007, 306 p.)

Jolene Brackey’s guide explores ways to help individuals with dementia experience moments of joy by reliving favorite pastimes and fond memories. It discusses the importance of patience and understanding, letting go of high expectations, and providing structure and routine. Also described are suggestions for positive verbal and nonverbal communication and for keeping a positive attitude and mood.

Published by Purdue University Press. Paperback $24.95.

Enhancing Communication.

Created by a group of people with dementia, this online booklet outlines the main communication-related challenges of people with dementia. One of three “By Us For Us” guides, it provides practical solutions and strategies to make opinions, feelings, and experiences known. It also suggests ways family caregivers and health professionals can enhance communication with people with dementia.

Published by the Murray Alzheimer Research and Education Program. Phone: 1-519-888-4567. Free online access.

How to Communicate with Alzheimer’s: A Practical Guide & Workbook for Families (2004, 152 p.)

This book by a speech pathologist Susan Kohler is designed to help family members communicate with a loved one who has Alzheimer’s disease, another dementia, confusion, or memory loss. In an easy-to-read format, it discusses the communication strengths and weaknesses of people with Alzheimer’s and effective communication strategies for them and friends and family.

Published by Granny’s Rocker Publishing. Phone: 1-866-743-9624. Email: susankohler@grpublishing.com. Spiral-bound $17.95, e-book $9.95.

Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease (2004, 241 p.)

This book by Joanne Koenig Coste describes the “habilitation” approach to caring for a person with Alzheimer’s disease, in which caregivers relate to the person with dementia’s current reality and abilities to promote emotional well-being. Caregivers can learn practical tips for communicating with individuals with Alzheimer’s and for reducing anxiety, agitation, and aggression.

Published by Houghton Mifflin. Available from online booksellers. Paperback $12.76. A related video is available from Terra Nova Films.

Validation Techniques for Dementia Care: The Family Guide to Improving Communication (2008, 144 p.)

This handbook teaches family and professional caregivers how to use the “validation” approach to overcome the communication and relationship challenges of caring for older adults with dementia. This approach was developed to help caregivers improve communication, avoid conflict, and maintain connections by validating expressed feelings rather than by focusing on the person’s confusion. Verbal and nonverbal communication techniques are illustrated in real-life case studies.

Published by Health Professions Press. Phone: 1-888-337-8808. Email: custserv@healthpropress.com. Paperback $22.95.

When Words Have Lost Their Meaning: Alzheimer’s Patients Communicate Through Art (2004, 224 p.)

Art can give people with Alzheimer’s a way to express their thoughts and emotions when they can no longer communicate well verbally. This book describes the cognitive, emotional, and behavioral changes that can affect a person’s ability to communicate. Guidelines for conducting art therapy with individuals and groups, case studies, and more than 70 drawings and paintings are included.

Published by ABC-CLIO. Phone: 1-800-368-6868. Email: customerservice@abc-clio.com. Hardcover $55; call for e-book price.

Behavior Resources

Bathing Without a Battle: Person-Directed Care of Individuals with Dementia. 2nd ed. (2008, 208 p.)

This book for professional and family caregivers offers an individualized approach to bathing and personal care of individuals with dementia. Its purpose is to change bathing practices that create unnecessary distress and discomfort for people with dementia. The strategies and techniques have been shown to work in both institutional and home settings.

Published by Springer Publishing Co. Phone: 1-877-687-7476. Email: cs@springerpub.com. Paperback $60.

Behavioral and Psychiatric Alzheimer’s Symptoms (PDF, 501K) (2011, 4 p.)

Many caregivers find behavioral symptoms to be the most challenging effects of Alzheimer’s disease. These symptoms are often a key factor in the decision to place a loved one in residential care. This fact sheet helps people recognize the behavioral symptoms of Alzheimer’s, understand the causes, and learn about medication and nonpharmacological treatments.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access.

Behaviors: How to Respond When Dementia Causes Unpredictable Behaviors (PDF, 868K) (2012, 16 p.)

This booklet describes difficult behaviors—aggression, anxiety, agitation, confusion, repetition, and suspicion—seen in people with dementia and how to respond to them. It outlines factors such as physical discomfort or frustration that may cause the behavior and describes how to identify common behaviors, determine their triggers, and respond effectively.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access.

Coping with Agitation and Aggression (PDF, 1.2M) (2012, 2 p.)

This tip sheet defines agitation and aggression, lists their possible causes, and gives caregivers suggestions for coping by, for example, making changes in the environment and giving reassurance.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Family Guide to Alzheimer’s Disease: Volume 2—Behavior Issues (2004, 67 min.)

Part of a series for families affected by Alzheimer’s disease, this video describes typical behavior issues, approaches to dealing with behavior problems, and possible causes of these behaviors. Specific topics addressed include agitation, aggression, hallucinations, wandering, sleeplessness, sundowning, incontinence, and socially inappropriate behaviors. The video also describes the use of redirection and “fiblets” as responses to challenging behaviors.

Published by LifeView Resources. Phone: 1-800-395-5433. Email: info@lifeviewresources.com. $24.95.

Hallucinations, Delusions, and Paranoia (PDF, 616K) (2012, 2 p.)

This tip sheet succinctly describes these behaviors and offers tips for coping with them. It explains that in some cases there may be a good reason for a person with Alzheimer’s to become paranoid, for example, if she or she has been a victim of abuse.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Managing Personality and Behavior Changes (PDF, 977K) (2012, 2 p.)

Common changes in personality and behavior are described in this online tip sheet, along with their possible causes, which may be related to the person’s health or environment. It offers concrete tips for responding to these changes.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Rummaging and Hiding Things (PDF, 608K) (2012, 2 p.)

A person with Alzheimer’s may start searching through cabinets and drawers or hiding things around the home. This tip sheet offers steps to allow the person to rummage while protecting belongings and keeping the person safe.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Safe Return: Alzheimer’s Disease Guide for Law Enforcement (PDF, 231K) (2006, 5 p.)

This guide is designed to help law enforcement personnel understand Alzheimer’s disease and how it affects a person’s thinking and behavior. It discusses situations—such as a person wandering and getting lost, auto accidents, false reports, indecent exposure, and shoplifting—that may be encountered. The guide also discusses what to do when a person with dementia is reported missing and lists the 10 warning signs of Alzheimer’s.

Published by the Alzheimer’s Association. Phone: 1-800- 272-3900. Email: info@alz.org. Free online access.

Sundowning (PDF, 216K) (2013, 2 p.)

In this brief tip sheet, sundowning is defined as restlessness, agitation, irritability or confusion that can begin or worsen as daylights begin to fade. The tip sheet tells caregivers how to spot signs of sundowning and what to do when they occur. Tips for preventing the behavior are also given.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

General Resources

Activities of Daily Living: An ADL Guide for Alzheimer’s Care. (2006, 93 p.)

This book by Kathy Laurenhue offers practical advice to help people with Alzheimer’s disease or a related dementia with basic activities of daily living. The author emphasizes that “problem” behaviors of people with Alzheimer’s are often attempts to communicate, and that caregivers should try to look at situations from the person’s perspective.

Available from online bookstores. Paperback $7.16.

Alzheimer’s Basic Caregiving: An ABC Guide (2006, 127 p.).

Kathy Laurenhue offers practical advice on caring for a person with Alzheimer’s disease or a related dementia. The book addresses, for example, effective communication and understanding agitated and aggressive behaviors

Available from online bookstores. Paperback $7.16.

Caregiver’s Guide to Understanding Dementia Behaviors (Guia del cuidador para entender la conducta de los pacientes con demencia) (2004)

This online guide offers practical advice for dealing with common communication and behavioral problems when caring for a person with dementia. General guidelines for understanding and coping with difficult behaviors are followed by suggestions for specific problems such as wandering, incontinence, agitation, sleeplessness, sundowning, and hallucinations.

Published by the Family Caregiver Alliance. Phone: 1-800- 445-8106. Email: info@caregiver.org. Free online access.

Navigating the Alzheimer’s Journey: A Compass for Caregiving (2004, 688 p.)

This guidebook draws on the author Carol Bowlby Sifton’s professional and personal experience in dementia caregiving, offering practical advice about managing the daily care of a person with dementia while caring for oneself to avoid burnout. Topics covered include communicating with someone who has dementia and understanding, preventing, and responding to behavioral symptoms.

Published by Health Professions Press. Phone: 1-888-337-8808. Email: custserv@healthpropress.com. Paperback $26.95.

Remembering Home: Rediscovering the Self in Dementia (2008, 144 p.)

Research has shown that stimulating early memories can have positive effects for people with dementia and can energize their relationships. This book by gerontologist Habib Chaudhury emphasizes the importance of home in the lives of adults with memory disorders and suggests ways that caregivers can use that concept to spark conversation and encourage reminiscing. The author encourages healthcare professionals and activity leaders to embrace a person-centered approach to care and provides tools and information for family caregivers.

Published by The Johns Hopkins University Press. Phone: 1-800-537-5487. Paperback $40.

Citation

https://www.nia.nih.gov/alzheimers/communication-and-behavior-problems-resources-alzheimers-caregivers

National Institute on Aging