Caregiving for Dementia
In the middle to late stages, it is common for Parkinson's to cause changes in cognitive function, including forgetfulness and trouble with concentration. One large study found that about three-quarters of people who live with Parkinson's for more than 10 years will develop dementia.
Caregiving for someone with Parkinson's and dementia is stressful, which can negatively impact health. Learning how to best communicate with someone who has dementia and to manage dementia behaviors will reduce caregiver stress. The resources listed here provides tips from experts and other dementia caregivers so you can more calmly and confidently care for your loved one.
Published by California Department of Social Services, October 2013
Although this 4-page fact sheet is written for caregiving professionals, the information applies to family caregivers as well. These 10 tips summarize all the information provided in caregiver education courses.
By Andrew J. Ridder, MD. Published by Michigan Health, Brain Health Blog, February 16, 2017
While more than 50% of those taking carbidopa-levodopa may experience psychosis (a break with reality), medication management of these symptoms is a balancing act. First, families must bring psychotic behavior (primarily hallucinations, delusions and illusions) to the attention of your medical team. Medical causes of the behavior, like infection must be ruled out, followed by a review of medications and possible medication adjustments before a lifestyle changes and possible medications for treatment are added.
Published by Family Caregiver Alliance
Read or listen to this fact sheet which includes ten tips for communicating with a person who has dementia, handling troubling behavior, wandering, incontinence, agitation, repetitive speech or actions (perseveration), paranoia, sleeplessness/sundowning, eating/nutrition and bathing, and additional dementia caregiving problem areas.
Published by Family Caregiver Alliance
Caring for an individual with dementia can be challenging and, at times, overwhelming. Frustration is a normal and valid emotional response to many of the difficulties of being a caregiver but feeling extreme frustration can have serious consequences for you or the person you care for. If your caregiving situation is causing you extreme frustration or anger, you may want to explore these techniques for coping.
Published by Family Caregiver Alliance, 2011
As caregivers, we often use intuition to help us decide what to do. No one ever gave us lessons on how to relate to someone with memory loss. Unfortunately, dealing with Alzheimer’s disease and other dementias is counterintuitive; i.e., often the right thing to do is exactly opposite that which seems like the right thing to do. This article offers some practical advice.
Published by Alzheimers.gov, managed by NIH
This comprehensive article includes bullet point tips on caring for people with dementia, including everyday care, changes in communication & behavior, maintaining health and an active lifestyle, home safety, taking care of yourself as a caregiver, and planning for the future.
By the Alzheimer's Association
The Association offers a number of Alzheimer’s and dementia programs online, including difficult conversations, effective communication strategies, living with Alzheimer's for caregivers of early, middle, and late stages, and understanding and responding to dementia behaviors.
Published by Duke Dementia Family Support Program, 2020-present
Duke partners with experts in the fields of caregiving and dementia to create this ongoing webinar series. Dementia caregiving topics include what to expect in middle stages, communication tools & strategies, nutrition, dementia 101, difficult decisions, and more. In addition, this webinar series includes talks on care strategies, long term care options, end of life, and more.
Published by Family Caregiver Alliance, October 26, 2018
Caregiver College is a selection of 5-7 minute long videos designed to show caregivers essential skills for taking care of their loved ones, including transfer skills, nutrition, dental care, bathing and dressing, toileting and incontinence, behavioral issues, and self care.
By the Lewy Body Dementia Association, 2023
In this 90-minute webinar Julia Wood, Occupational Therapist defines the various changes to thinking that may present with LBD and offers useful strategies to help you cope with these changes in your daily life.
By UCLA Health
This series of 18 videos was created to help family caregivers understand behaviors associated with dementia and provide you with practical tools to manage them. Topics include aggression, agitation and anxiety, alcohol abuse, driving, lack of eating, paranoid thoughts, depression and apathy, hallucinations, home safety, refusal to bathe, refusal to take medications, repetitive behaviors, repetitive phone calls, repetitive questions, sexually inappropriate behaviors, sleep disturbances, sundowning, and wandering.
By the Mayo Clinic
A series of seven videos is focused on Lewy Body Dementia with experts from Mayo and collaborating partners presenting on LBD and ways to manage symptoms and improve quality of life for the person with dementia and their caregivers. Topics include an overview of LBD, medications, fluctuations and hallucinations, after the diagnosis, the art of communication, and more.
By the UCSF Memory and Aging Center, May 8, 2020
This series of five webinars is intended for family caregivers. Topics include an overview of Lewy Body Dementia (LBD) and how its treated, behavior and mood symptoms, managing daily activities and fall prevention, advocacy, and advanced stage and end-of-life care.
By the Alzheimer's Foundation of America, May 3, 2022
In this one-hour webinar Jennifer Reeder, LCSW, acknowledges that not only does the person with dementia change, but family dynamics also change. She discusses the importance of family meetings and how to prepare for and hold a family meeting. Also provided are tips for long distance caregiving and home safety.
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias
By Nancy L. Mace and Peter V. Rabins. Published by Johns Hopkins Press, August 2021
The 36-Hour Day has been guiding caregivers of those with dementia for 40 years. Any edition will be helpful, but newer editions include new content. The central idea, that much can be done to improve the lives of people with dementia and of those caring for them, remains the same.
The Caregiver Helpbook
By Marilyn Cleland and Vicki L. Schmall. Published by Powerful Tools for Caregivers, January 2013
Developed as part of the family caregiver education program, "Powerful Tools for Caregivers," this book is designed to provide caregivers with tools to increase self care and give them confidence in handling difficult situations, emotions, and decisions. Topics are designed to help caregivers reduce personal stress, communicate feelings and needs, use community services, deal with emotions such as anger, guilt, and depression, and make tough caregiving decisions
Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and Caregivers
By Jolene Brackey. Published by Purdue University Press, November 2016
Originally published in 1999, the 5th edition of Creating Moments of Joy is revised and expanded. The premise of the book is that when people have memory loss, their lives are made up of moments. We cannot create perfectly wonderful days for people with dementia, but we can create perfectly wonderful moments.
The Dementia Handbook: How to Provide Dementia Care at Home
By Judy Cornish. Published by CreateSpace Independent Publishing Platform, March 2017
Judy Cornish is the founder of the Dementia & Alzheimer’s Wellbeing Network® (DAWN). She approaches dementia care with clear and empathetic methods that improve the lives of the person with dementia and those caring for them. Judy has identified a pattern in the abilities and disabilities of people living with dementia. Based on this, she developed methods for caregivers to ease emotional distress, which can quickly and safely resolve challenging behaviors.
Thoughtful Dementia Care: Understanding the Dementia Experience
By Jennifer Ghent-Fuller. Published by CreateSpace Independent Publishing Platform, April 2012
The author explains the loss of different types of memory and other thinking processes and describes how that affects someone’s daily life and their understanding of the world around them. She also shares practical suggestions based on the way people with dementia view common life situations and real-life experiences.
This book is an expansion of the free paper by the same author, "Understanding the Dementia Experience.”
When Reasoning No Longer Works: A Practical Guide for Caregivers Dealing with Dementia & Alzheimer's Care
By Angel Smits. Published by Pink Giraffe Books, August 2022
The author, a gerontologist with over 20 years of experience, wrote this book to be like a training manual for family caregivers caring for someone with dementia. It gives an easy-to-understand view of what dementia does to the brain, how it’s diagnosed, and most importantly, how to deal with its effects.
Founded in 1980 the Alzheimer's Association provides education and support for people caring for all types of dementia. The website is accessible in both English and Spanish. In addition to the 24/7 Helpline (800-272-3900), you will find support groups, online information, and educational courses and conferences for every stage of care, including the Savvy Caregiver course.
For more than 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments. Services include assessment, care planning, respite grants, and legal/financial consultation vouchers and caregiver education, including Powerful Tools for Caregivers and There Must Be a Better Way than This.
Last updated October 2023 by Stanford Parkinson's Community Outreach