Dementia Resources for Caregivers
The following are Tara's dementia resource recommendations. She has used each one of these resources in her personal and professional life and hopes you find them just as beneficial.
AARP is a non-profit organization that supports Americans 50 years and older. The caregiving section of their website is an excellent source of information and can help no matter where you are in the caregiving journey. It includes the basics of caregiving, caring for someone at home, what to know about long-term care, financial and legal information, creating a life balance, and connecting with local resources in your community.
Learn More: www.aarp.org/caregiving/
The Alzheimer’s Association provides support, education, and research on a global, national, and local level. They have a 24/7 helpline 800.272.3900 that you can call to receive immediate support as well as an entire section dedicated to caregivers. Here you can find support groups, connect with your local chapter, receive tips for caregiver health, and learn how to best care for someone during different stages of their Alzheimer’s and dementia journey.
Learn More: www.alz.org/help-support/caregiving
Caregiver Action Network
CAN is a non-profit organization providing tools, resources, support, and education for all family caregivers. Their family caregiver toolbox is a great starting point. It includes information for new and longtime caregivers, creating balance while still working as a caregiver, and how to help as a long-distance caregiver.
Learn More: www.caregiveraction.org
Hilarity For Charity
HFC is a national non-profit that was founded by Seth Rogen and Lauren Miller Rogen. They provide a wealth of support and information for caregivers including a caregiver respite program, online support groups, and webinars and workshops.
Learn More: www.wearehfc.org/caregivers
Positive Approach to Care with Teepa Snow
PAC provides awareness, knowledge, and support for anyone connected to the dementia community. They strive for a more positive dementia care culture and offer a ton of free and paid resources, webinars, and training for caregivers.
Whole Care Network
WCN strives to provide caregivers with trusted resources and authentic caregiving stories. They have an expansive podcast network and their pillars of care help caregivers balance their physical, social, financial, and spiritual health.
Frontotemporal Degeneration (FTD) Resources for Caregivers
The following are Tara's FTD resource recommendations. FTD and younger onset dementia are often misdiagnosed, can present with a different set of symptoms, and can be a challenge to receive support and services because not everyone in the dementia community is familiar with these types of dementia.
AFTD’s mission is to improve the quality of life for people affected by Frontotemporal Degeneration. They strive to bring awareness to the community and provide support, education, advocacy, and research. On their website, you can find local support groups, resources for the newly diagnosed, guidance for managing care, and legal and financial planning.
Learn More: www.theaftd.org
Dementia UK is a specialist dementia nursing charity. They have an entire section of their website dedicated to younger onset dementia. You can find information on diagnosis and next steps, support for children and adolescents of a parent living with younger onset dementia, and an online network of people who have been affected by younger onset dementia.
Learn FTD is an educational website. Information includes an overview of FTD, the signs and symptoms, and what it means to receive an FTD diagnosis. They also have several discussion guides for how to approach doctor visits and genetic testing.
Learn More: www.learnftd.com
This non-profit organization was founded by the spouse of someone living with younger onset Alzheimer’s. Lorenzo’s House strives to shift the narrative from isolation and suffering to connection and joy. Their website offers virtual and in-person programs for younger families in need of connection, support, and education.
Learn More: www.lorenzoshouse.org
Remember Me Podcast
Rachel and Maria were two strangers who were both caring for a parent living with FTD. They connected over this shared experience and created the Remember Me podcast. Together they raise awareness and have fostered a community where people can feel seen and heard. Their podcast episodes are honest, raw, and emotional in the best way and shine a light on what it is like to care for someone living with FTD.
Learn More: www.remembermeftd.com