National Alliance for Caregiving
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of more than 80 state and local caregiving coalitions and serves as Founder and Secretariat for the International Alliance of Carer Organizations (IACO).
Caregiver Action Network
The Caregiver Action Network connects caregivers to an online resource for those experiencing needs from diseases such as ALSP. You can access direct assistance on the home page via the Family Caregiver Toolbox or review the 10 tips for the Family Caregiver fact sheet. Caregivers have an opportunity to subscribe to a newsletter and email news updates each month. There are forums with videos designed and targeted to a specific ailment affecting your loved one (See the Rare diseases section by scrolling down from About Us). You can find other agencies or organizations near you for more resources. Check out the Caregiver Help Desk at 855-227-3640 (800am-700pm EST) for more information.
Founded in 1995 was established due to a long-distance caregiver need. The website quickly became a wealth of information for those caring for others and continues to this day. The website offers archived eMagazines with celebrity interviews. As well as reports on Long-term care, Care for the Caregiver, Caregiver 101, and other topics focusing on assisting a loved one. Due to the abundance of information offered here, the eNewsletter subscription includes a checklist for ailments before applying. Check out the Fearless Caregiver Conference dates in Florida in September and October 2022!
The Caregiver Space
The Caregiver Space champions the caregiver and offers partnerships. You can share your story, find community, and discover current information written by experienced caregivers. Furthermore, you can investigate articles and research in the library to facilitate the caregiver’s needs. This is a service to find advocacy for similar situations that you might have. The Caregiver Space motto is "we share real advice from real caregivers."
Well Spouse Association
This association teaches and promotes caring for a partner who may be chronically ill or disabled. The website offers validation for those caregivers in the home. Although this is a membership-based organization, there are still contributions online for articles, webinars, and podcasts. In addition, the association connects caregivers with mentors. Finally, the group brings together spousal caregivers for respite weekends and even a national conference to encourage and assist those who experience the challenge of supporting a partner.
Caregivers play an important role in the lives of individuals with ALSP. A diagnosis of ALSP can be difficult, emotional, and overwhelming for everyone involved, especially caregivers. As a caregiver, you will have questions and concerns of your own. It is important to know that while your loved one’s life may change, and yours with it, you are not alone.
By educating yourself on ALSP symptoms, long-term effects, and potential treatments, you will have information to help your loved one and yourself deal with the daily impact of ALSP on your lives. The following websites have education on caregiving and caregiver support.