Expert Briefing: Living Alone: Home Safety & Management
Parkinson's disease (PD) can impact a person's ability to live safely and independently in their home. This presentation will provide people with Parkinson's disease, their care partners, and health professionals with information and ideas to help them manage home safety problems associated with PD. It will focus primarily on falls but will also address other potential safety problems related to the motor and non-motor aspects of Parkinson's disease. It will cover risk factors for home safety problems and strategies to prevent them.
At the end of this presentation, participants will:
Describe person, activity and environment-related risk factors and contributors to home safety problems associated with Parkinson's disease.
Understand the impact of home safety problems on daily function and quality of life among people with Parkinson's disease.
List potential strategies for managing home safety risks.
Presenter
Erin Foster, PhD, O.T.D., M.S.C.I., O.T.R./L Assistant Professor, Occupational Therapy, Neurology and Psychiatry Washington University School of Medicine
This series is made possible by educational grants from AbbVie, Inc., Sunovion and Lundbeck LLC.
The Parkinson's Foundation designs Expert Briefings in collaboration with the Dallas Area Parkinsonism Society (DAPS); the Houston Area Parkinson Society (HAPS); the Michigan Parkinson Foundation (MPF); Northwest Parkinson's Foundation (NWPF); Parkinson Association of the Carolinas (PAC); the Neuro Challenge Foundation (NCF); the Parkinson Association of the Carolinas (PAC); the Parkinson Association of the Rockies (PAR); the Parkinson's Association (PA); and the Parkinson Support Center of Kentuckiana (PSCKY).
Raise Awareness
PD Dementia: An Important Conversation
Many people with Parkinson’s disease (PD) experience some degree of cognitive change, such as slowness of memory, changes in thinking, trouble focusing or difficulty finding words. Dementia is a permanent cognitive change that interferes with daily activities and quality of life. Identifying thinking changes early and discussing them with your doctor are the first steps in treating or ruling out PD-related dementia.
This article is based on a Parkinson’s Foundation Expert Briefing Let’s Talk About Dementia presented by Dr. James Leverenz, Director, Lou Ruvo Center for Brain Health at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence.
Slowed movement, tremor and stiffness are some of the visible movement signs of Parkinson's disease. Though not visible, the impact of non-movement symptoms can be even more challenging for people with PD and their loved ones — this includes issues with thinking and memory. While PD-related cognitive change can be mild, between 60 to 80% of people living with PD for 15 years or more can experience disease-related dementia. Awareness of thinking changes can ensure early treatment.
Lewy Body Dementias
In Parkinson’s, the protein alpha-synuclein misfolds and forms clusters in the brain called Lewy bodies. These sticky clusters upset normal brain function. Lewy bodies are strongly linked to PD and dementia.
Nearly 1.5 million Americans are impacted by Lewy body dementias, including those living with:
Parkinson’s disease dementia (PDD): diagnosed when significant cognitive decline occurs in someone living with Parkinson’s movement symptoms for a year or more (usually several years).
Dementia with Lewy bodies (DLB): diagnosed when cognitive decline occurs before or at the same time as motor symptoms.
Almost 50% of people with Alzheimer's disease also have some Lewy body brain abnormalities. These are frequently seen in both people who live with sporadic and familial forms of Alzheimer's. When these changes go beyond a part of the brain called the amygdala, people often have some of the same symptoms as people living with dementia with Lewy bodies , frequently developing Parkinson's-like motor symptoms. This is known as the Lewy body variant of Alzheimer disease.
Some researchers theorize that Alzheimer's disease may drive clumping of Lewy bodies. New therapies designed to slow Alzheimer's progression could also hold possibility to slow Lewy body development — another reason for the importance of an early and correct diagnosis, and early treatment.
Dementia Signs and Symptoms
In addition to memory, thinking and behavior changes, other symptoms include:
Despite many shared symptoms across Lewy body dementia diseases, people often store and recall information differently, depending on which cognitive disorder they are living with.
Adding and retaining new memories is often difficult for people living with Alzheimer's disease. It may be challenging for someone with Alzheimer's to remember a question or conversation just minutes after, or they may have forgotten events from the previous day. Encoding new information can be an issue. However, if a person experiencing PD thinking changes struggles retrieving a memory, they can often pull it up with a clue or a reminder.
This means people with PD dementia can store memories. Rather than primary encoding difficulty, they often experience retrieval challenges — an executive dysfunction similar to difficulty multitasking or staying on track during conversations.
People with Alzheimer’s disease tend to have less awareness that they are hallucinating. A person with PD dementia or dementia with Lewy bodies can more often recognize that they are experiencing hallucinations. It’s important for the care provider to ask the person experiencing changes “Do you see things?” People with PD-related dementia will often acknowledge that they do see things, are aware the hallucinations are not real and are not bothered by what they see.
Diagnosing Lewy Body Dementias
Ensuring the person living with thinking changes receives the correct diagnosis is important. When diagnosing dementia, a doctor, neurologist or other healthcare expert will look for the ability to retrieve retained memories, early executive dysfunction or multitasking difficulties.
A review of symptoms, medications, medical history and more are also key to an accurate diagnosis. Your doctor will also rule out other medical illnesses — urinary tract infections or pneumonia can be related to sudden confusion and agitation.
Work with your doctor to identify any medications that might impact symptoms. Some medicines can cause or worsen confusion and hallucinations, including:
Certain dopamine-boosting medications that ease movement at lower doses but may worsen thinking problems at higher doses
Old antipsychotics, such as haloperidol, and anticholinergic (acetylcholine-blocking)
Medications, such as trihexyphenydil, sometimes used to treat tremor
Therapies
Medications used in Alzheimer’s disease have benefits in PD dementia, including rivastigmine, donepezil and galantamine. Selective serotonin reuptake inhibitors (SSRIs), used for depression, may also be beneficial.
For people with Parkinson’s experiencing rapid eye movement (REM) sleep behavior disorder, your doctor might recommend the over-the-counter sleep aid melatonin. Clonazepam is frequently used if melatonin is not effective, although it can cause confusion, daytime sleepiness and other side effects.
Cognitive remediation, provided by a neuropsychologist or speech-language pathologist, focuses on strengthening cognition.
Behavior management modifies activities and environments to improve abilities and independence. It includes creating a daily routine, decluttering living spaces, increasing lighting and using assistive tools to reduce confusion.
Exercise, physical activity and social connection can also benefit cognitive health.
On the Horizon
Research is currently underway to better understand dementia and discover disease-specific therapies. Diagnosing and treating the earliest stages of thinking change can ensure early lifestyle adjustments and the best chance for responsive therapy.
Understanding the biological differences behind the development and onset of all Lewy body dementias will be essential to future disease-specific therapies.
Scientists are currently working to standardize testing of blood and body fluids to reveal amassed Lewy body alpha-synuclein. This could serve as an early detection tool for neurodegenerative disorders related to the protein, such as PD.
People who experience rapid eye movement (REM) sleep behavior disorder (RBD) are at risk for developing Lewy body dementias. This risk factor might be another potential early diagnosis clue or cue to begin preventative future preventative therapies as they become available.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and dementia by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) or visiting Parkinson’s Foundation resources below.
Driving is a complex task involving many physical skills and mental processes. Age, along with a chronic or progressive illness like Parkinson’s, affects these critical driving skills, making a driver less safe on the road. But giving up the keys is an emotionally charged issue. Lissa Kapust created DriveWise, a program that involves a multidisciplinary team of health professionals who do objective assessments of the many skills and mental abilities needed for safe driving.
Released: August 15, 2017
Giving up the keys can be both an emotional and practical loss – of independence, mobility, and even your sense of youth. It is a marker of aging, and in the case of Parkinson’s, an indicator of disease progression. Instead of thinking about “giving up the keys,” it can be helpful to frame the situation as “driving retirement.” Life will change, but you can plan for it and look forward to new ways to spend your time.
Lissa has been an educator, program developer, researcher, writer, and clinician in the Department of Neurology at Beth Israel Deaconess Medical Center (BIDMC), a Parkinson’s Foundation Center of Excellence, for over 30 years, and over the past several years, she has focused her activities in the field of Parkinson’s. With funding from the Parkinson’s Foundation, she developed an educational video on driving safety for Parkinson's patients. She is founder and clinical coordinator of “DriveWise,” a nationally-acclaimed, hospital-based assessment of driving safety for those with underlying medical problems. In 2010, she became program coordinator for “Wellness Works,” which offers a broad range of exercise and therapeutic programs to patients and family members. She takes leadership within the interdisciplinary team that provides integrated services for people with PD, including the assessment of patients for deep brain stimulation. Lissa has a keen interest in ethics and how principles of ethics intersect with clinical care of patients. She regularly attends monthly Ethics Rounds at BIDMC and has presented cases on several occasions.
When a person shows up in a doctor’s office with symptoms that may be related to Parkinson’s disease (PD), the diagnosis may not be obvious since symptoms often differ from person to person or could be indicative of other conditions. It’s not uncommon for people go from doctor to doctor over months or even years before they get a correct diagnosis. A visit to a movement disorders neurologist may result in a faster PD diagnosis, but unless PD is suspected, that may not be the first medical specialist on someone’s list.
For some, a Parkinson’s diagnosis comes as a relief; an explanation for previously unexplained symptoms. Others may be stunned, struggling with what the future may look like. As you begin processing your emotions, which can be wide-ranging, it’s important to know you are not alone. In this episode, Gretchen Rosswurm describes her experience with getting a PD diagnosis and how she dealt with it. One way was to take advantage of many of the resources of the Parkinson’s Foundation. Gretchen is now the Chair of the People with Parkinson’s Council of the Foundation. Certainly not everyone accepts or approaches a new PD diagnosis in the same way. So Anna Hedges relates some of the questions she has fielded from newly diagnosed callers as a Parkinson’s Foundation Helpline Information Specialist for the past ten years.
Released: October 6, 2020
Gretchen Rosswurm was diagnosed with Parkinson’s Disease in 2017 at the age of 52. Her commitment to the Parkinson’s community springs from a deep history of PD in her family while at the same time believing that what seems an impossible challenge creates opportunities for connection, healing and hope. Professionally, Gretchen’s work experience centers around corporate philanthropy. She also blogs and writes short fiction. She lives with her family in Dallas. Gretchen was selected to join the Parkinson’s Foundation People with Parkinson’s Council in 2018 and was elected as Chair in 2020 after serving as vice chair.
Anna Hedges, MSW is a Parkinson's information specialist with the Parkinson's Foundation Helpline. She has a Master of Social work from Washington University in St. Louis and has been working on the Parkinson's Helpline for over 10 years. She enjoys interacting with patients and families and witnessing their amazing resiliency.
En este webinar, diseñado para los aliados en el cuidado que enfrentan el agotamiento mientras apoyan a su ser querido, aprenderán a reconocer las señales de agotamiento del cuidador, comprender qué es y explorar herramientas y estrategias prácticas para manejar el estrés y mantener su bienestar mientras brindan cuidados.
10 a.m. Hora del Pacífico (Los Ángeles) 11 a.m. Hora de la Montaña (Colorado, Phoenix y Nuevo México) 12 p.m. Hora del Centro (Texas y Ciudad de México) 1 p.m. Hora del Este (Nueva York , Peru y Colombia) 2 p.m. Hora de Venezuela 3 p.m. Hora de Chile y Argentina
*Por favor, verifica su zonas horarias.*
Presentadora
Edna Hutchinson
CCHW-S3
Gerente de programa, Programa de Educación para la Autogestión de Enfermedades Crónicas
Instructora de formación en primeros auxilios para la salud mental
Instructora del programa PEARLS, Presbyterian Community Health
Community Partners in Parkinson’s Care is a program designed to educate and prepare care staff to provide optimal care for people with Parkinson’s disease living in care communities.
Living with Parkinson’s can be challenging, but many resources are available to help you live your best quality of life. This program will provide important information, resources, and strategies to live well with Parkinson's. We invite you to register early and stay tuned for full details!
The event is free and is open to people with Parkinson's, their family, friends and the community. Registration is required as in-person seating is limited.
Thank you to our event partner, the Greater Fresno Parkinson’s Support Group.
Community Partners in Parkinson’s Care is a program designed to educate and prepare care staff to provide optimal care for people with Parkinson’s disease living in care communities.
Our Parkinson’s Foundation Ambassadors are the backbone of our outreach, bringing awareness about Parkinson’s disease (PD) directly into local communities. From leading community walks, to staffing tables at resource fairs, to starting meaningful conversations about the urgency of PD -- there are many ways to get involved with the Foundation.
Each of our ambassadors has their own story and special reason for choosing to volunteer with us. In this special episode, we speak with Holly Bloom, who was recently recognized as a Rising Star in the South Central Chapter. She shares her volunteer experience with the Foundation and her personal journey as a care partner.
Released: September 8, 2025
Holly Bloom is a dedicated caregiver to her husband, Tim, who was diagnosed with young-onset Parkinson’s disease at age 38. Her personal journey has inspired her advocacy as an Ambassador for the Parkinson’s Foundation, where she supports awareness and education efforts. Holly also volunteers as a committee member for Moving Day San Antonio, helping organize community events that unite and empower those affected by Parkinson’s. Through her roles, she brings compassion, strength, and a deep commitment to making a difference.
Empiece a prepararse al menos dos semanas antes de su próxima cita de la enfermedad de Parkinson (EP) para estar listo para hablar de lo que más le importa.
Utilice esta hoja de trabajo para elegir los tres temas principales para su cita. Considere completarlo con alguien de confianza para tener otro punto de vista.
Parte 1: Piense en cómo impacta el Parkinson en su vida
Anote sus inquietudes acerca de la EP entre una cita y otra. Puede utilizar un diario, enviarse un correo electrónico, grabar una nota de voz o utilizar una aplicación del móvil. Esto le ayudará a identificar sus principales preocupaciones antes de cada cita. Considere cada una de las siguientes áreas.
Salud física
Salud mental
Familia y amigos
Trabajo o finanzas
Tareas diarias
Gustos y tiempo libre
Paso 1)Síntomas: Reflexione sobre los cambios.
¿Qué síntomas le resultan más molestos? ¿Cómo afectan su vida diaria?
¿Qué cosas empeoran o mejoran los síntomas?
¿Los ajustes del tratamiento de su última cita (medicamentos, terapia, dieta) le ayudaron?
¿Sus familiares o amigos han notado algún cambio?
Paso 2) Metas: Considere lo que más le importa.
¿En qué está enfocado ahora mismo (trabajo, familia, pasatiempos, viajes)?
¿Qué actividades quiere seguir haciendo?
¿Los síntomas le dificultan hacer las cosas que disfruta?
Paso 3)Inquietudes: Piense en sus mayores preguntas o inquietudes.
¿Le preocupan los medicamentos (que su efecto no dure tanto, costos, efectos secundarios)?
¿Cómo afecta el Parkinson sus relaciones?
¿Necesita ayuda para encontrar recursos y apoyo para el Parkinson?
Parte 2: Decida qué es lo más importante para esta cita
Paso 4) Elija sus 3 temas principales para la cita.
Ahora que ha reflexionado, piense en lo que está afectando su vida diaria y qué necesita abordar cuanto antes. Termine esta frase:
"Si sólo puedo hablar de tres temas con mi equipo de atención médica durante esta cita, los más importantes son ______________.”
Paso 5) Escriba sus 3 temas a continuación.
Anote los temas por orden de importancia. Esté preparado para compartir su lista al inicio de su próxima cita. Sea lo más específico posible, incluyendo la frecuencia de los síntomas y a qué hora del día suelen aparecer. Considere llevar un video de los síntomas motores para mostrárselo a su equipo de atención médica.
Recordatorios importantes
Comparta cualquier síntoma que le moleste, aunque no sepa si está relacionado con la EP.
Lleve una lista de todos sus medicamentos, incluidos los que no son para la EP. Incluya la hora a la que los toma y la dosis (ej: 2 x 100 mg).
Si puede, pida a alguien de confianza que lo acompañe.
Aprenda acerca de los síntomas y tratamientos de la EP para hablar con su equipo de atención médica.
¿Necesita ayuda?
Comuníquese a la Línea de Ayuda de la Parkinson’s Foundation al 1-800-4PD-INFO (473- 4636) opción 3 para español o Helpline@Parkinson.org.
Nuestra Línea de Ayuda puede:
Ayudarle a prepararse para su cita.
Responder a las preguntas sobre la EP que no haya abordado durante sus citas.
Localizar especialistas, grupos de apoyo y clases de ejercicio para la EP cerca de usted.
Videos & Webinars
Resources for Veterans with Parkinson’s 2025
August 28, 2025
More than 110,000 U.S. veterans living with Parkinson’s disease (PD) receive care through the Department of Veterans Affairs (VA), which offers access to specialized treatment, financial benefits, and dedicated support services. In this webinar, we’ll explore the wide range of resources available to veterans with PD through the VA system, including Parkinson’s Disease Research, Education and Clinical Centers (PADRECCs), affiliated sites, and Veteran Service Organizations (VSOs). Participants will also learn how the Parkinson’s Foundation partners with the VA to provide additional education, tools, and support for veterans and their families.
Presenters
Gretchen Glenn, LCSW
Associate Director of Education
Corporal Michael J. Crescenz VA Medical Center
Philadelphia Parkinson's Disease Research, Education, and Clinical Center
Chair of the National VA Parkinson’s Disease Consortium Education Subcommittee
Helen R. Komninos (McHugh)
NSO Assistant Supervisor
DAV National Service Officer
Cuidar de alguien que tiene problemas de memoria o de pensamiento conlleva desafíos diarios únicos para los aliados en el cuidado y las familias. Acompáñenos en este webinar diseñado especialmente para aliados en el cuidado. Exploraremos estrategias prácticas para promover la movilidad diaria conservando la independencia de su ser querido, prevenir caídas, iniciar conversaciones abiertas con su familia y seres queridos acerca de los servicios de apoyo disponibles para ayudar a guiar un mejor cuidado de su ser querido, y aprender a navegar desafíos frecuentes que los cambios de conducta y cognitivos pueden traer a la experiencia de cuidado.
9 a.m. Hora del Pacífico (Los Ángeles y Phoenix) 10 a.m. Hora de la Montaña (Colorado, Nuevo México y Ciudad de México) 11 a.m. Hora del Centro (Texas, Colombia y Perú) 12 p.m. Hora del Este (Nueva York y Venezuela) 1 p.m. Hora de Chile y Argentina
Presentadores
Dra. Tais Protasio
Especialista en medicina geriátrica
Ilian Mino
Asistente de investigación
División de Medicina Geriátrica,
CU Anschutz School of Medicine
Joanna Fitzgibbons, Maestra en Ciencias
Coordinadora del programa,
División de Medicina Geriátrica,
CU Anschutz School of Medicine
Community Partners in Parkinson’s Care is a program designed to educate and prepare care staff to provide optimal care for people with Parkinson’s disease living in care communities.
