From Hope to Action:
Goal 2: Ensure that high-quality, responsive FTD care and support are available to anyone in need, at every stage of this journey.
Priority: Quality Care and Support
The disruption and isolation so often brought on by FTD are heightened by a profound lack of high-quality care and support options.
Objective 2.1: By 2025, facilitate the development of a framework to identify and disseminate promising practices in FTD care and support.
- 2.1.1 Establish a task force of key stakeholders (professionals, care partners, persons with FTD) to guide this work.
- 2.1.2 Continuously identify, evaluate, and catalogue promising practices in FTD care.
- 2.1.3 Define and implement the best dissemination options to reach primary audiences: healthcare providers and families including persons with FTD and care partners.
- 2.1.4 Ensure stronger inclusion of multidisciplinary FTD care experts in AFTD’s professional advisory committees.
Objective 2.2: Scale current programs and services to reach more people and underserved communities (including rural, Black, Latinx, AAPI, Veterans, LGBTQ+).
- 2.2.1 Build awareness among AFTD staff in culturally responsive dementia care and provide ongoing staff training.
- 2.2.2 Integrate culturally responsive services into current and new support and education programs and services.
- 2.2.3 Identify and partner with established coalitions and allied groups for each community to understand their needs and educate them about FTD.
- 2.2.4 Identify and engage champions within each community, including professionals and volunteers.
- 2.2.5 Expand HelpLine resources and infrastructure to improve responsiveness to community needs.
Objective 2.3: Develop and provide a menu of supports and services that are responsive to the needs of families facing a genetic variant that causes FTD.
- 2.3.1 Deepen AFTD’s understanding of information and support needs of people who are at risk, mutation positive, and mutation negative.
- 2.3.2 Continue to improve and expand upon information AFTD offers on genetic risk, counseling, and testing.
- 2.3.3 Implement programs to meet needs that genetic-variant facing families identify as priorities.
- 2.3.4 Empower and enable family members to engage in ways they desire to make a difference.
Objective 2.4: Increase the number of ways people can connect to support and resources, more quickly
- 2.4.1 Develop a tool, or tools, to enable access to consumer-recommended, FTD- knowledgeable local resources
- 2.4.2 Expand digital and online support options for persons living with FTD and care partners. Capture metrics on use of social media, website, online groups, and other technologies.
- 2.4.3 Expand the number and type of volunteer roles and activities that provide diversified support options for people with FTD, care partners and family/friends.