Patient and Family Resources

Welcome to the website of the “Improving Antipsychotic Appropriateness in Dementia Patients (IA-ADAPT)” project. This page provides information and resources for family members of people with dementia, or patients in the early stages of illness.

The information focuses on the use of antipsychotic medicines in dementia. These medicines can sometimes help manage symptoms of dementia, such as dangerous behaviors or thoughts that are scary to the person. However, they can also cause serious unwanted side effects. The risks and benefits of these medicines need to be carefully weighed before deciding to use them. Antipsychotic medicines are usually used as a last resort when behaviors or symptoms cannot be managed using other approaches.

The shared decision making guide, “Antipsychotic Medicines for People with Dementia,” was written to help family members make choices about the use of antipsychotics. It includes information that can be discussed with a health care provider to decide whether to use one of these medicines.

The “Managing a Crisis” link provides a tip sheet for handling a situation when your loved one is very upset. Your response can sometimes help your loved one feel more relaxed and safe. This also provides the phone number for the Alzheimer’s Association hotline, which is available 24 hours a day, 7 days a week. This hotline is staffed by people who provide help and support for caregivers of people with dementia. They can also recommend resources such as support groups.

This website includes three short videos for family members, and links to other helpful websites. Click on the video links on the right to watch the videos. Resources for managing behaviors are listed in the section below. We hope that you find this information useful in caring for your loved one with dementia.

Videos

  1. Introduction and Overview of Resources
  2. Facilitating Shared Decision Making on Antipsychotic Use
    • How to discuss antipsychotic use with your doctor
  3. Antipsychotic Monitoring
    • Describes what benefits and side effects to watch for when an antipsychotic is used

Resources for Learning to Manage Behaviors:

Alzheimer’s Association
http://www.alz.org/
The Alzheimer’s Association offers many useful resources for people with dementia, family members, and caregivers. The caregiver section of their website provides useful information on how to provide care, manage behaviors, and cope with the stresses of caregiving. The ‘behaviors’ links in their caregiver section have especially useful information for managing difficult behaviors.

Family Caregiver Alliance. 2004. Fact Sheet : Caregiver's Guide to Understanding Dementia Behaviors.
https://caregiver.org/caregivers-guide-understanding-dementia-behaviors
The factsheet from Family Caregiver Alliance provides a series of tips for communication with a person with dementia and tips for dealing with problem behaviors without drugs.

Technical Requirements

Viewing the videos requires a broadband Internet connection, sound capability, and one of the following supported browsers, with JavaScript enabled:

  • Chrome 30+ or Firefox 30+ on Windows with Flash 16+
  • Internet Explorer 9 (or later) on Windows with Flash 16+
  • Firefox 30+ or Safari 6+ on Mac OSX with Flash 16+
  • iPad

Viewing and printing the information sheets requires Adobe Reader.