Help & Support #85: Resources & Recommendations for Secondary Care Partners and Caregivers
Typically, managing care for someone with FTD is not a one-person job. In many FTD families, an especially close loved one – a spouse, a parent, an adult child – may serve as a primary caregiver or care partner for a person diagnosed, helping with their care on a daily basis. The Managing FTD and Coordinating Care sections of the AFTD website show how primary caregivers can develop a routine and address the various care needs of persons diagnosed.
But another type of caregiver/care partner exists just outside that immediate orbit: secondary caregivers. Secondary caregivers are loved ones who – due to geographical distance and/or limited availability – are unable to handle the day-to-day care needs for their loved one with FTD but are equally invested in their wellbeing. Each person diagnosed with FTD needs a broad circle of support, comprised of people with different abilities and availability. Secondary caregivers, therefore, can be crucial supports in a family’s FTD journey. Here are some ways that secondary FTD caregivers and care partners can help:
No matter where you are along the journey, it’s important to stay informed about what FTD is and what it can do. The Doctor Thinks It’s FTD. Now What? booklet is a helpful resource in understanding FTD when your loved one is newly diagnosed. You can also follow AFTD on social media, or simply visit the What’s New section of the AFTD website, to stay up to date on the latest FTD news, including research advances, clinical and drug trial developments, non-pharmacological therapy treatments, and other available care/support services that are available.
Secondary caregivers can be essential in helping to minimize the burnout often experienced by primary caregivers and care partners. Talk with your loved one’s primary caregiver about how you can support them. Start by asking if there are specific days or times you can set aside to care for the person diagnosed while the primary caregiver takes time to rest. You can also offer support by helping to advance a day when effective treatments for FTD are a reality: Participate in FTD-specific research studies, join the FTD Disorders Registry, or simply walk or run on behalf of your loved one to raise money for AFTD’s mission, whether in a formal race or by using the Charity Miles app.
Persons living with FTD can become isolated and may feel disconnected from their family and friends. Take the time to stay connected with your loved one throughout their journey. Schedule in-person visits, video chats, or phone calls, and include your loved one in outings and celebrations that can accommodate their current abilities. Going to FTD-specific events with your loved one — such as a support group, Meet & Greet, or the annual AFTD Education Conference — can help to nourish that connection in a positive and meaningful way.
Share Their Story
Your loved one’s FTD story is important, and your voice is crucial in educating others about FTD. Help raise FTD awareness by sharing your loved one’s story. Consider taking part in AFTD awareness campaigns such as February’s With Love and, starting in late September, Food for Thought.
No amount of support is insignificant when facing an FTD diagnosis. For more information on how you can help with caring for your loved one with FTD, visit the AFTD website. You can also access information and support by contacting AFTD’s HelpLine via telephone (1-866-507-7222) or email ([email protected]).