Tools, Guides, & How-tos

Alzheimer’s Disease and Down Syndrome, a Practical Guidebook for Caregivers

This guide is very practical and can help family members and other caregivers by walking them through the importance and the process of baseline assessments, possible symptoms, getting a diagnoses, and how to support their family member and themselves through all the stages of the disease.

-created by the National Down Syndrome Society in partnership with the National Task Group on Intellectual Disabilities and Dementia Practices and the Alzheimer’s Association.

Caregiving Life: Fast Tips for Supporting YOU! -these quick-action tips provide solutions for caregiving stresses that go beyond recommendations to “take time to relax”. They have been gathered from organizations such as the Family Caregiver Alliance, Washington State’s Aging and Long Term Services Administration, and AARP.

Dementia Road Map-A Guide for Families and Care Partners is produced by Dementia Action Collaborative, WA.

Dementia Legal Planning Toolkit: to help individuals with mild cognitive impairment or dementia think about the kinds of financial and health care decisions that need to be made. Includes some do-it-yourself legal forms to get started. Produced by Dementia Action Collaborative, WA.

“Let’s Talk Dementia“: Six brief videos featuring Washingtonians with dementia and their care partners, talking about the value of early diagnosis and what they suggest for living well with dementia. Courtesy of Dementia Action Collaborative.

Tip Sheets for Dementia Care: family caregivers will appreciate these short informative one-page documents, which can be read online, downloaded, or printed. Available in English, Español (Spanish), and やまと(Japanese) . Pick just the topic you need, or get them all in one document package (the package is in English and Spanish only at this time). Developed by Alzheimer’s Los Angeles and the Dementia Action Collaborative of Washington State.

Easy Factsheets for Kinship Families

Kinship families are families in which children live with and are being raised by grandparents, other extended family members, or other adults with whom they have a close family-like relationship such as close family friends. Even though most of the challenges that come with raising children are the same for a kinship family, there are two important differences:

• Kinship caregivers do not have automatic legal rights and responsibilities for the children. Raising children when they are not the child’s parent was not necessarily planned or expected. It’s often related to a family crisis, and the child welfare system is not always involved.
• Kinship caregivers can often use help with all of the practical issues surrounding a suddenly larger family: large enough housing, paying for the extra food, ensuring medical care, and registering children at a different school. Legal issues may come up–powers of attorney to get things done, custody, guardianship of the children, parental rights and visitation.

These factsheets can help kinship caregivers find WA-State specific information to help.

A Family Caregiver Decision Guide: This downloadable or online guide leads you through essential steps to help families make decisions about a family member’s care.

Family Caregiver Handbook (online pdf) order a free, printed copy This downloadable handbook is specific, detailed, and practical, written for WA State residents by the Aging and Long Term Support Administration at Washington State Department of Social and Health Services. Topics include, but aren’t limited to:

• Providing Day to Day Care (how to do caregiving tasks safely for you and your loved one)
• Safety in the Home
• Dealing with Challenging Behaviors
• Emotional Challenges of Caregiving
• Where to Turn When You Need Help
• Paying for Services or a Care Facility

Finding Respite in Washington State (article)

Hiring an in-home care provider (online documents):

• Potential questions to ask a Respite Provider Agency
• “The ABCs of Respite for Family Caregivers” – The ARCH National Respite Network & Resource Center provides this checklist and narrative to use in locating, interviewing, and hiring a personal care provider to meet family needs.  It may also be of use in maintaining quality care once you have located a provider.

Get it online at WashingtonLawHelp.org: Dementia Legal Planning Toolkit. Free paper copies: Order Form for Paper Version of Dementia Legal Planning Toolkit

How-to Caregiving Videos: Learning Videos for Adult Care at Home

Internet Safety Resources: So much information for family caregivers is online, and this resource from Washington’s Department of Social and Health Services (DSHS) will help with the security of your online searches, keeping your children safe, and figuring out if information you find online is trustworthy. Includes links to similar information in video format.

Medicaid or Medicare, Which Covers Long-Term Care? (document): A short and specific comparison for individuals and family caregivers on which services are covered by each program. Courtesy of Pierce County Washington’s Aging and Disability Resource Center (ADRC), part of the Aging and Disability Resource Centers network across WA State. Find your area’s ADRC at Community Living Connections.

Pathways to Respite Toolkit (online document and tool): This online tool offers definitions, information, resources, and check-lists for care givers in WA. The Pathways to Respite Toolkit is a good place to start conversations among families, for care givers, and to support one another. 

Parkinson’s Disease

There are many active organizations working on research to treat and cure Parkinson’s Disease and support individuals living with PD and their caregivers. At Lifespan Respite WA, we focus on caregivers. Our team gathered resources from these organizations to help caregivers in their lives and their caregiving work. This list is For Care Partners/Caregivers of Individuals Living with Parkinson’s Disease.