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APDA American Parkinson Disease Association
Information & Referral Center

In Home Care

Being a primary caregiver can be overwhelming. At some point you may find you need help with all the tasks that need doing when you are caregiving at home. Whether you are looking for companionship, personal care, respite care, legal advice, tax preparation, meal preparation or delivery, gardening, transportation, etc. these resources will help you find free, private pay and government or private programs to meet your needs. None of these resources are specific to Parkinson's disease.

Relevant Publications - Downloadable

“Caregiver Resource Guides by State”
Published by AARP
Select your state (or, in some states, your city) to view a directory of many government and nonprofit resources accessible both in-person and online with tips to finding services and supports.

Relevant Online Information

“9 Care Options for People Living With Dementia,” by Esther Heerema, MSW
Published by Verywell Health, February 11, 2018
An outline of nine care options for people living with dementia (home health care, home helpers and companions, meal delivery services, rotating family members, adult day care, visiting nurses and physicians, respite care, residential facility options, palliative or hospice care) including where to find care options, how they help and how to pay for them.

“Alternatives to Nursing Homes”
Published by Medicare.gov/Nursing Home Compare
Discharge planners and social workers can explain alternatives to nursing home care including those defined on this page, including community services, home care, accessory dwelling units (ADUs), subsidized senior housing, board & care homes, assisted living facilities, continuing care retirement communities (CCRCs), hospice, respite, Program for All-Inclusive Care for the Elderly (PACE), and home and community-based waiver programs.

“Caregiving at Home: A Guide to Community Resources”
Published by the Family Caregiver Alliance, 2017
Includes information on assessing needs, values & preferences to determine what kind of help/support will best work, and how to hold a family meeting.  Also, community care options, like friends/family/neighbors/religious community, California’s Caregiver Resource Centers, AAAs, senior centers, adult daycare, respite care, meals, Caregiver managers and more.

“Caregiving Question and Answer Tool”
Published by AARP
Choose a topic and click “See all questions” to view all related questions - and answers. Topics include basic caregiving, balancing life and caregiving, insurance and benefits, legal and financial issues, and senior housing and home care. OR find the content you are looking for by using the search box beside “Search Caregiving Q&A.”  Do not be fooled by the ad just above the "Search Caregiving Q&A."

"Outside Help"
Published by the Parkinson’s Foundation
This series of five webpages helps you think through whether getting outside help is right for your situation, where to find help, preparing paid caregivers and if a care facility needed rather than in-home care.  Each page has several links to related information, including PDF worksheets for scheduling friends, family & volunteers to help at your home, orienting and training hired caregivers, a home safety checklist and more.

“Eldercare Locator”
Published by the Department of Health and Human Services Administration on Aging
Connects you to services for older adults and their families.  Call 1-800-677-1116 or use the online finder tool.  Search by location for a list of local agencies and organizations that provide information and assistance for older adults and caregivers.  Search by topic to find national information and resources on topics like adult day programs, food & nutrition, home repair & modification, housing options, in-home services, long term care, nursing home & LTC facilities and transportation.

“Family Care Navigator”
Published by the Family Caregiver Alliance
State-by-state online finder tool helps families locate government programs, non-profit organizations and private groups, including those offering health and disability programs, legal resources, disease-specific organizations and more.  There is a separate finder tool for national resources and organizations.

“Hiring In-Home Help” 
Published by the Family Caregiver Alliance
Includes info on deciding when assistance is needed, addressing obstacles like a loved one who doesn’t want outside help and not wanting a stranger in the house, comparing Home Care Agencies vs. private hire, what will it cost and how to afford it, finding the right person, writing a job description, interviewing, writing a contract for hired help, your responsibilities as an employer, communication with your new helper and resource links, including a state of CA caregiver background check.

“Home Health Compare”
Published by Medicare.gov
If you have doctor’s orders for home health care due to an illness or injury, use this online tool to find the best provider in your area.  Enter your zip code or city, state or just your state.  Filter the resulting list by quality of patient care ratings and patient survey summary ratings.  Alternately, enter the name of a home health agency to see how it compares on a 5-star rating scale.

“How to Hire a Caregiver”
Published by AARP
Defines five types of care for hire and outlines a three-step process for hiring a caregiver. Step 1. Get ready: Identify needs and limitations, likes, dislikes, expectations & Dr. recommendations, review insurance and get a doctor’s report confirming need for in-home care. Step 2. Compare options: agency vs. registry. Step 3. Interview applicants from prepared questions.

“Medicare Interactive”
Published by MedicareInteractive.org
Access an array of Medicare topics or search for your topic or questions in the search bar on this website all about educating Medicare users about their benefits.  Medicare topics include health coverage options, covered services, Medicare Advantage, prescription drug coverage, coordinating Medicare with other types of insurance, cost-saving programs, denials and appeals, fraud and abuse, and planning for Medicare and securing quality care.

“National Respite Locator”
Published by ARCH (Access to Respite Care and Help)
Helps family caregivers and professionals find respite services in their state and local area.  Features both “Search for Respite” and “Search for Respite Funding” online tools.  This database is not a complete list of all respite programs or possible funding resources.  Search results provide contact information for organizations providing short-term respite and long-term care facilities for vacation respite.

Helpful Organizations

“Aging Life Care Association”
Formerly the National Association of Professional Geriatric Care Managers
Geriatric care managers are certified professionals in eight areas: health and disability management, medical billing and insurance concerns, housing options, family communication, local resources, advocacy, elderlaw information and referrals, and medical crisis intervention.  Learn more about Aging Life Care and find a geriatric care manager near you.

This list was compiled by Denise Dagan with the Stanford APDA Information & Referral Center, August 2018.

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