
Resources for Family Caregivers
Essential Guides on Caregiving and Respite:
Finding Respite (Respite Offers a Break for Caregivers and Those They Support : Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.
Pathways to Respite Toolkit : 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.
A Family Caregiver Decision Guide: This interactive downloadable or online guide leads you through essential steps to help families make decisions about a family member’s care.
Planning for Lifelong Care: Guiding Questions for Transgender and Non-binary People to plan for Dementia and Other Serious Illnesses. An online resource from Transgender Law Center.
Recorded Webinar on this topic, from SAGE National Resource Center on LGBTQ+ Aging
How to Choose a Respite Provider (ARCH National Respite Network and Resource Center), part of The ABCs of Respite-A Consumer Guide for Family Caregivers (online or pdf download)
Trualta WA Caregivers’ Learning Portal: Log in (or register if it’s the first time) and click on the Learning Tab at the top of the main website page. Scroll down to click on the +Filters button on the right, to select the topic of your interest.
Connect with Other Caregivers for Support
Family Caregiver Support Program: offered through Aging and Disability Resource Centers throughout WA State. Contact information for support groups and other services.
Kinship Caregiver Support Groups: If you are raising a child of a relative or friend you can connect with other kinship caregivers in your region through the Kinship Care Supports and Services at Washington’s Department of Social and Health Services. Contact information for support groups and other Kinship caregiver supports is listed by county or region.
Parent to Parent Support Program: Well-known WA State branch of the national organization offers county or regionally-based support groups, 1:1 support matches with trained parent volunteers who have similar caregiving situations with their children, in-person events, newsletters, and much more.
Trualta WA Caregivers’ Learning Portal: offers both time-limited and ongoing support groups, generally topic-based. Some groups are always anonymous, others give the option to join with or without your camera on. Log in (or register if it’s the first time) and click on the Events tab. You can sign up to get the monthly newsletter with a schedule of all support group meetings and upcoming live webinars.
Financial Help for Caregivers in WA State
Informing Families is a website of the Washington State Developmental Disabilities Council, in partnership with the Developmental Disabilities Administration. Information on services (which may include respite) available through WA State’s Medicaid Waiver Programs for individuals with Intellectual or Developmental disability.
Family Caregiver Support Program offered through Aging and Disability Resource Centers throughout WA State: sliding-scale respite care is offered at some of these programs when funding permits. Contact information for respite and other services.
Finding Respite (Respite Offers a Break for Caregivers and Those They Support): Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.
Financial Support for Caregiving. Being a caregiver for a family member or friend comes with unexpected costs. 4 short articles and videos help family caregivers find financial support options in Washington State:
- Paid Leave and Job-protecting Unpaid Leave in Washington State,
- Job Flexibility
- Offset Some Costs of Family Caregiving, and
- How Can I Afford Long-Term Care?
Medicaid or Medicare, Which Covers Long-Term Care? 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.
WA State and Federal Benefits for Kinship Caregivers at WA’s Department of Social and Health Services.
Safe Living at Home
The HomeFit Guide from AARP: “The AARP HomeFit Guide was created to help people live safely and comfortably in their home by enabling where they live to be a “lifelong home,” suitable for themselves and others in their household, no matter a person’s age or life stage.” Visit AARP.org/HomeFit for related resources and to download or order a print copy of the AARP HomeFit Guid, available in English, Español (Spanish), 中国人 (Chinese), 한국인, (Korean) and Tiếng Việt (Vietnamese).
How-to Caregiving Videos: Learning Videos for Adult Care at Home, AARP. Covers all the essential topics to help with adult and senior care activities in the home
Trualta WA Caregivers’ Learning Portal: Log in (or register if it’s the first time) and click on the Learning Tab at the top of the main website page. Scroll down to click on the +Filters button on the right, to select the topic of your interest. This site has a wider range of topics and methods to learn than the AARP site above but filtering your search is important.
Caregivers in Certain Categories
Kinship families are families where children live with and are being raised by grandparents, other extended family members, or 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 practical issues for a suddenly larger family: big enough housing, food expenses, 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.
WA State Supports for Kinship Families
Temporary Caregivers of Military Children: Guide to Essential Information
LGTBQIA+ Caregivers
SAGE, Advocacy & Services for LGBTQ+ Elders, (organization, website) says “We’re a national advocacy and services organization that’s been looking out for LGBTQ+ [their acronym] elders since 1978. We build welcoming communities and keep our issues in the national conversation to ensure a fulfilling future for all LGBTQ+ people”. Among their many resources and program areas is the National Resource Center on LGBTQ+ Aging, covering: Caregiving, LGBTQ+ inclusion and cultural competency, Elder abuse and neglect, Social security, Medicare, and Medicaid, Health care, Financial security and retirement, Housing, HIV/AIDS.
Military and Veteran Caregivers
Exceptional Family Member Program: Provides all four military branches with care and respite support for families with a member who has a special need or disability. When military respite is not available, military families should know they are also eligible to apply for civilian respite services while living in Washington State. See also: Finding Respite in Washington State.
Coast Guard Special Needs Program: provides Coast Guard family members who have special needs or a disability with care and support. Coast Guard families may also apply to civilian sources of respite care in Washington State. See also: Finding Respite in Washington State.
Your branch of service may have branch-specific resources for respite. Contact the Exceptional Family Member Family Support Office at your nearest installation or Coast Guard Special Needs Program by phone or email.
Veterans Affairs offers two different programs which support family members caring for a veteran. Both offer training and a wide range of supports such as peer mentor support (a caregiver who has ‘been there’ and can help you navigate caregiving), one-on-one or group coaching sessions, resource referral, and respite care.
Program of General Caregiver Support Services (PGCSS)
“PGCSS is the core of VA’s Caregiver Support Program (CSP). The program provides peer support mentoring, skills training, coaching, telephone support, online programs, and referrals to available resources to caregivers of Veterans. The Veteran must be enrolled in Department of Veterans Affairs (VA) health care and be receiving assistance from a caregiver in order for the caregiver to participate.”
Program of Comprehensive Assistance for Family Caregivers (PCAFC)
“PCAFC offers enhanced clinical support and services for caregivers of eligible Veterans who have a serious injury (or illness) and require in-person personal care services among other requirements.
Eligibility Information; Apply for PCAFC; Frequently Asked Questions
To enroll, please reach out to the facility Caregiver Support Team or request a referral from the Veteran’s provider.” -from US Department of Veterans Affairs VA Caregiver Program.
American Indian and Alaska Native Caregivers
Lifespan Respite WA works to increase respite options for American Indian and Alaskan Native caregivers with direct input from Tribal organizations and members, as they have the knowledge and awareness of how to meet this need. The Lifespan Respite WA Voucher Program is open to all eligible American Indian and Alaskan Native caregivers.
Contacts for Tribal programs in WA State can be found on the ALTSA Tribal Affairs website at Washington’s Department of Social and Health Services (DSHS).
See also: Finding Respite (Respite Offers a Break for Caregivers and Those They Support): Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.
Caregiver Resources for Some Medical Conditions
Alzheimer’s Disease and Down Syndrome, a Practical Guidebook for Caregivers This guide helps family members and other caregivers by walking them through the importance and process of baseline assessments, possible symptoms, getting a diagnosis, 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.
Children with Special Health Care Needs: These sites offer other types of help and resources:
- WA Department of Health – Children with Special Health Care Needs
- Family Voices of WA (Family to Family Health Information Center)
- The Lifespan Respite WA Voucher Program serves unpaid, unserved family caregivers caring for individuals of any age with small grants (vouchers) to help them afford respite care.
Dementia Road Map-A Guide for Families and Care Partners is 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).
For Care Partners/Caregivers of Individuals Living with Parkinson’s Disease
- American Academy of Neurology’s Brain&Life website has a quick search function for all types of neurological diseases including Parkinson’s, as well as clinical guidelines (best practices) and information on clinical trials and clinical research.
- Davis Phinney Foundation for Parkinson’s 1-866-358-0285; contact@dpf.org
- “Dedicated to helping people with Parkinson’s disease live well today. Provides information, inspiration, tools, resources, and opportunities to people living with Parkinson’s Disease and care partners to better manage their disease and promote increased engagement in health.”
- Among a list of more traditional resources, the Davis Phinney Foundation focuses in on person-to-person support for those living with Parkinson’s and their care partners:
- Parkinson’s Ambassadors: located in 35 states and Canada (one on one support)
- “We have more than 70 Ambassadors located in 35 states and Canada. Ambassadors are available to connect with individuals, families, and groups to help answer questions about living well with Parkinson’s and connect you with resources and relationships to provide support.”
- Living with Parkinson’s and Care Partner Meetups on Zoom (comes with how-tos for Zoom and access to recordings)
- “Our monthly Living with Parkinson’s Meetup brings together all people diagnosed with Parkinson’s—young, old, early, late—for open, honest, real, and always fun conversations about everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.”
- La Davis Phinney Fundación en Español
- Usted puede Vivir Bien Hoy si ha sido diagnosticado con Parkinson y nuestra misión es acompañarlo y apoyarlo durante este camino.
- A continuación, encontrará una serie de enlaces a distintos espacios y formularios mediante los cuales queremos establecer un puente de comunicación e información con nuestra comunidad de Parkinson de habla hispana.
- Y no olvide que siempre puede contactarnos enviando un correo electrónico a la siguiente dirección: cmartinez@dpf.org.
- Sitio Web : En español
- Contacte a un Embajador Líder
- Inscríbete a la Lista de Correo
- Cuestionario Momentos Victoriosos (personas con Parkinson)
- Cuestionario Momentos Victoriosos (aliados de bienestar/cuidadores)
- ¡Ayúdenos a tener contenido relevante y útil! Llene esta encuesta sobre contenidos en español
- Lifespan Respite WA’s website can link care partners to the Washington Family Caregiver Learning Portal (from TRUALTA), which has free training for the type of care individuals with Parkinson’s may need at home. Once in the Portal, type “Parkinsons” in the search bar.
- The Michael J. Fox Foundation for Parkinson’s Research
- This research-focused organization does have good advice for caregivers, found under the topic “Care Partners”. The “Support Group” page has some specifics for starting a support group. If you don’t find one that works for you, there is this list:
- Parkinson’s Buddy Network is an online community of people impacted by Parkinson’s designed to help you make meaningful connections, engage in important dialogue, find useful resources and build long-lasting relationships.
- NeuroTalk has a robust Parkinson’s disease community.
- Caring.com hosts a Parkinson’s support group.
- HealthUnlocked has Parkinson’s community pages.
- Smart Patients Parkinson’s Disease Community offers self-care tips.
- PatientsLikeMe has a Parkinson’s forum.
- This research-focused organization does have good advice for caregivers, found under the topic “Care Partners”. The “Support Group” page has some specifics for starting a support group. If you don’t find one that works for you, there is this list:
- MyParkinsonsTeam. The website says “MyParkinsonsTeam is a free social network that makes it easy for you to:
- get the emotional support you need from others like you, and
- gain practical advice and insights on managing treatment or therapies for Parkinson’s disease”
- Note that this site is run by a for-profit organization, so you may wish to carefully read the “About” section.
- Northwest Parkinson’s Foundation
- Toll-Free: 1-877-980-7500
Seattle area: 206-748-9481
Email: info@nwpf.org Website: https://nwpf.org - “Our Mission is to transform the way people live with Parkinson’s through awareness, education, advocacy, and care.” They serve in Washington, Alaska, Montana, and Idaho.
- Toll-Free: 1-877-980-7500
- Social Services: “Northwest Parkinson’s aims to fill in the gaps between neurology visits by providing support for People with Parkinson’s, Caregivers, Family members, and Providers in Washington, Alaska, Montana, and Idaho. Social Work is available to provide PD related education and resources or simply lend a listening ear. We offer:
- 1 to 1 phone consultations to navigate life with Parkinson’s and caring for someone with Parkinson’s. During these consultations we can go over a range of resources from Support Groups, in-home care, placement advisory referrals, Neurology/MDS referrals, financial assistance resources, online and local movement/fitness programs, among others.
- Support Groups. NWPF runs a few different support groups for Carepartners, Adult Children, and Lay Facilitators of PD Support Groups. We also keep a listing of Support Groups in each of the 4 states we service.”
- Many other supports and services
- Parkinson’s Foundation Parkinson’s Foundation en Español
- “Parkinson’s Foundation focuses on research and access to healthcare for individuals living with Parkinson’s Disease. The Pacific Northwest Chapter serves residents of Alaska, Idaho, Montana, Oregon and Washington with local resources”
- Support for Care Partners includes among other resources
- Free Care Partner Course
- Books, Audiobooks, Fact Sheets,
- Webinars, Videos (Example video: CareMAP: Advice for Caregivers, from Caregivers)
- Podcasts
- For programs, support groups and specialist referrals, call the Parkinson Foundation’s Helpline at 1-800-473-4636, or by email: Helpline@Parkinson.org.
- Stanford Medicine has the Caregiver Corner with fact sheets, blog, articles, videos, and podcasts.
Organizations with Caregiver Resources
AARP is a nonprofit, non-partisan organization focused on older Americans. “AARP empowers people to choose how they live as they age. More than 100 million Americans are 50 or older, and people want their money, health, and happiness to last as long as they do. We are a wise friend and fierce defender, focusing on the priorities of older Americans.”
AARP’s website has a section of their website for family caregivers who care for older loved ones. Topics: Basics, Care at Home, Medical ,Financial and Legal, Life Balance
Aging and Long-Term Support Administration (ALTSA) (website) (for Washington State residents or caring for individuals who live in WA State): a very wide selection of services and supports, including Long-term Care Services and Information, a Local Services finder, Kinship and Tribal programs and services, and much more. Long-term Services and Supports covers care at home and in facility-based care. ALTSA is the State-level partner in the Lifespan Respite WA program and leads our Statewide Lifespan Respite Coalition.
Arc Washington, The: Information on the statewide Parent to Parent (P2P) program.
ARCH National Respite Network (website): ARCH assists and promotes the development of quality respite and crisis care programs; helps families locate respite and crisis care services in their communities; and serves as a strong voice for respite in all forums. Information, training, and connections for families and the professionals who serve them.
AANE (Association for Autism and Neurodiversity-website) is focused on the autistic adult community, but there are also resources for and about youth and young adults. Their website has some articles and opinion pieces on the topic of adults with autism and caring for older adults with autism. They use identity-first language (“autistic adult”).
All Catholic Community Services of WA are non-denominational in the services they offer. Many other community/social service programs are available such as housing support, mental health support and treatment, food and financial assistance, teen and youth support, and more.
The listings below focus on programs that may help family caregivers get breaks from some caregiving tasks, and for seniors and individuals with disabilities who want to stay independent in their own homes.
Catholic Community Services of Western Washington
In Clallam, Cowlitz, Grays Harbor, Island, Jefferson, King, Kitsap, Lewis, Mason, Pacific, Pierce, San Juan, Skagit, Skamania, Snohomish, Thurston, Wahkiakum, and Whatcom Counties.
Home Care and Community Supports: non-medical assistance to aging persons and those with disabilities living in their homes. Housework, grocery shopping, laundry, dishes, personal care such as dressing and bathing, and transferring from and to a bed. Available for all income levels. Background checked, trained, and supervised professional home care workers.
Volunteer Services: Available for persons 60 years of age and older, living on a fixed income with some health and/or mobility limitations, and adults, age 18 – 59, who have temporary or permanent functional limitations.
2-8 hours a month of no-cost assistances with housework, laundry,shopping/errands; transportation; cooking, household/minor home repairs, yard work, wood provision, and moving assistance. Volunteers are background checked, trained, and provided with insurance coverage.
Catholic Charities of Central Washington
All volunteers are background checked and receive training.
Catholic Charities Volunteer Services help low-income seniors and individuals with limited mobility due to disabilities in many ways – providing rides, delivering groceries or prescriptions, performing household chores or handyman tasks, visiting with seniors in person or over the phone, and more. “Our goal is to help people stay in their homes surrounded by the people and things that give them comfort.” Available in Yakima, Kittitas, Klickitat, Chelan, Douglas, Grant, Benton and Franklin Counties.
AmeriCorps Senior Companions (volunteer services) Similar to the program above, but volunteers may be eligible for a stipend through AmeriCorps. Available in Yakima, Kittitas, Klickitat, Chelan, Douglas, Grant, Benton, Franklin and also Walla Walla Counties. (Walla Walla County residents can also access the Volunteer Chore services and Commodities programs at Catholic Charities Eastern Washington, below).
Catholic Charities Eastern Washington
Volunteer Chore Services: for low-income elderly and disabled individuals to enable them to live in their own homes. Chores include housework, laundry, transportation, shopping and similar independent living tasks. Moving in and/or out and seasonal yard cleanups are also available. Offices are in Colville, Spokane and Walla Walla Counties, and serve Adams, Asotin, Columbia, Colville Reservation, Ferry, Garfield, Lincoln, Okanagan, Pend Oreille, Spokane, Stevens, Walla Walla, and Whitman Counties
Commodities Program: volunteers with Catholic Charities Eastern WA deliver food from the Partners Inland NW (formerly Valley Partners) Food Bank for those who are unable to get to the food bank-Spokane Valley.
Community Living Connections WA State: Use this website to find all sorts of services and get answers to your questions about being a caregiver for an adult or elder. For example, on the home page is a search tool where you can put in your county and a keyword, such as “Adult Day Services”. The search will return a list of programs and companies in that county that offer adult day services.
This is also a site to find respite options available through publicly funded organizations such as Aging and Disability Resource Centers. Options may include expanded Medicaid options such as Tailored Support for Older Adults/Medicaid Alternative Care (for those not qualifying for Medicaid based on income) and COPES (Community Options Program Entry System); the Family Caregiver Support Program respite funding (may be based on sliding income scale), and other potential options for families who are not able to self-pay.
Informing Families is a website of the Washington State Developmental Disabilities Council, in partnership with the Developmental Disabilities Administration. Information on services (which may include respite) available through WA State’s Medicaid Waiver Programs for individuals with Intellectual or Developmental disability.
Family Caregiver Alliance (website): FCA has an extensive set of information for caregivers, with topics ranging from Advanced Illness through Out of Home Care and including Intimacy and Working with Siblings. Note: their website focuses on caring for adults. Many of their resources are available in several languages.
National Council on Aging offers BenefitsCheckup, a quick way to find resources in your state and/or community that can help support your older loved ones (or yourself!).
PAVE (website): Lifespan Respite WA is a program at PAVE, a statewide organization which provides support, training, information and resources to empower and give voice to individuals, youth, and families impacted by disabilities in Washington. Scroll up to the top of any Lifespan Respite WA page or post to see everything else PAVE covers-Learning in School, Parent & Family, Health & Wellness, Young Adults, and the Calendar of trainings, meetings, and events. Click on the button that says “Get Support” for information directly about your individual concerns.
ONEcaregiver Resource Center: (website) “A centralized platform to support caregivers and adults with intellectual and developmental disabilities who may be at risk of, or are living with, Alzheimer’s disease or related dementias”.
