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.

Parkinson Psychosis Treatment for Caregivers

A Caregiver’s Guide to Parkinson’s Disease Psychosis Treatment
By Andrew J. Ridder, MD. Published by Michigan Health, Brain Health Blog, February 16, 2017
More than 50% of those taking carbidopa-levodopa may experience psychosis (a break with reality) and medication management of symptoms is a balancing act, but families must first bring psychotic behavior (hallucinations, delusions and illusions) to the attention of their medical team. Medical causes of psychosis (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.

General Dementia Caregiving Tips

Fact Sheets for Dementia Caregivers
Published by Family Caregiver Alliance
Caregiver’s Guide to Understanding Dementia Behaviors, 2016
Read or listen to this fact sheet which includes ten tips for communicating with a person who has dementia and handling difficult behaviors.
Dementia, Caregiving, and Controlling Frustration, 2003
Frustration is a normal and valid emotional response to the challenges of being a caregiver. If you experience extreme frustration or anger, you may want to explore these techniques for coping.
Ten Real-Life Strategies for Dementia Caregiving, 2011
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.

Ten Tips for Communicating with a Person with Dementia
Published by California Department of Social Services, October 2013
Although this four-page fact sheet is written for caregiving professionals, the information applies to family caregivers as well. These ten tips summarize all the information provided in caregiver education courses.

Tips for Caregivers and Families of People With Dementia
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.

Dementia Care Training Videos

Alzheimer’s Education Center
By Alzheimer’s Association
Alzheimer’s 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, understanding and responding to dementia behaviors, and more.

Caregiver College Video Series
Published by Family Caregiver Alliance, October 26, 2018
Caregiver College is a selection of five-to-seven-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.

Caregiver Connections Educational Webinar Series
Published by Duke Dementia Family Support Program, starting in 2020
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.

Dementia Careblazers
By Natali Edmonds, PsyD ABPP, Careblazers.com
Hundreds of free dementia training videos on YouTube from 2018-present.

Dementia Caregiver Training Videos
By UCLA Health
This series of 18 videos was created to help family caregivers understand challenging behaviors associated with dementia and provide 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.

Navigating Family Dynamics in Dementia Care
By 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.

Books

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, September 2025
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 fifth 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. Also available as an audiobook.

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. Also available as an audiobook.

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.” Also available as an audiobook.

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. Also available as an audiobook.

Organizations that Provide Caregiver Education

Alzheimer’s Association
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 in-person and virtual support groups, online information, and educational courses for every stage of care.

Family Caregiver Alliance
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 virtual caregiver education, including Powerful Tools for Caregivers and There Must Be a Better Way than This.

Online Caregiver Support Communities

Mayo Caregivers: Dementia
This online forum provides support, practical information, and answers to questions about caring for someone living with any type of dementia at any stage. The group is hosted and moderated Mayo Clinic so no question goes unanswered. Must be a member to post to the forum. Anyone may read posts. Nearly 800 members in July 2022.