Carepartner Resources
The CurePSP Carepartner Guidebook is brochure covering all things carepartners should know about dealing with and living with a prime of life brain disease. Chapters include: Making Meaning to Stay Positive, Caregiver Stress and Burnout, Keeping Families Strong, The Seven Deadly Emotions of Caregiving, among others. To have a print copy sent to you contact Joanna Teters, Community Outreach and Resources Manager, at 347-294-2873 or info@curepsp.org. This brochure is made possible with thanks to our caring supporters.
Click here for the CurePSP Carepartner Guidebook
We are proud to bring you the 2018 CurePSP Guidebook. This signature publication features 150 pages of the latest information on PSP, CBD, and MSA and is the perfect reference for patients, family, care partners, and health professionals. The Guidebook is available for a suggested donation of $20 at this page. Alternatively, call Alisa Hansen, at 443-578-5670 or email donations@curepsp.org.
Click here for the 2018 CurePSP Guidebook
Caregiver Advice
National Institute of Aging: Caregiving is a great resources to learn how you can be an effective caregiver for your loved one and how to take care of yourself.
National Institute of Aging: Planning for Long-Term Care will help you prepare for the possibility of long-term care. Though you may never need it, an unexpected accident, illness, or injury can change your needs, sometimes suddenly. The best time to think about long-term care is before you need it, giving you time to learn about services in your community and what they cost. It also allows you to make important decisions while you are still able.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. The information on this page is for reference and educational purposes. There is no substitute for seeing your doctor.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
The Eldercare Locator is a public service of the U.S. Administration on Aging. This searchable website is a first step for finding local agencies in every U.S. community that can help older persons and their families access home and community-based services like transportation, meals, home care, and caregiver support services. To speak to an Eldercare Locator information specialist call toll-free 1-800-677-1116 weekdays, 9:00 a.m. to 8:00 p.m. (ET). Spanish-speaking Information Specialists are on duty.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Share The Care is a non-profit organization that provides information on how to organize a care group for someone who is seriously ill. In addition, their site provides links to other sites caregivers might find useful.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Well Spouse Association (WSA) is A 501(c)(3) non-profit, self-help, and volunteer-based organization whose mission is to provide peer emotional support and information to the husbands, wives, and partners of the chronically ill and/or disabled. WSA is the only national organization which focuses exclusively on spousal caregivers. WSA offers local area support groups, mentors, respite weekends, an online forum, and more.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Respite Services
CurePSP has created the Cherie Levien Quality of Life Fund to ease the financial burden of getting professional, in-home respite care. This fund provides grants of up to $2,500 to be spent on in-home care services to families in need. Our goal in developing the fund is to reduce the stress that is often experienced by caregivers.
Books on PSP
CurePSP has accumulated a collection of books over the years, written from varying points of view: people with PSP, people caring for spouses with PSP, even a book written for toddlers to understand the effects of PSP on their family member. Please follow the link below to see the list of books. If you think we are missing some titles, please email info@curepsp.org.
Bereavement Support Resources
Grief is a very personal journey, often impacted and shaped by different cultural and religious practices and always woven with complex thoughts, feelings, and emotions. CurePSP wants to provide you with our support and perhaps offer some guidance to help you on this journey and transition in your life. CurePSP has collaborated with members of the CurePSP Patient & Carepartner Advocacy Committee to create a list of bereavement resources, articles, books, and online links.
Network of Support
CurePSP encourages and organizes activities that foster face-to-face communication, exchange of ideas and information, and interaction for comfort and mutual benefit to group members. The groups are for caregivers, carepartners, family members, friends, and people with PSP, CBD, MSA, or a related disease. There are three ways to connect.
