Dear HelpLine,

We have reached the difficult decision to look for long-term facility care for my sister, and I feel overwhelmed because I don’t know what to look for or where to start. What things should I consider when trying to find a facility for her?

 

The decision to begin looking for professional and facility care options for a loved one can be emotionally and logistically challenging and stressful, especially when you may not have experience navigating these options. There are many important factors to consider when choosing the right care facility for a person with FTD. Since FTD is not as common or as well-known as other types of dementia, FTD-specific facilities are generally not available, and families often find themselves having to advocate for their loved ones by adapting the services to their needs. AFTD published an issue of Partners in FTD Care Finding the Way: Successfully Transitioning to Residential Care, that serves as a guide for families and facilities in navigating the transition to facility care and developing a person-centered care plan.

After an initial phone call, the best way to evaluate a facility is to visit, look around, and talk with the people there. These first visits can be emotionally draining, so make sure to give yourself grace and reach out for support if needed. Remember that you are considering facility care because it might be the best care option for your loved one at this stage in their FTD journey. If possible, bring someone with you for the tour to have a second set of eyes and ears.

Tours of the unit or facility often start with a staff member. Don’t hesitate to ask them questions. If you can, plan a second visit as well, either during a mealtime, on an evening or weekend to see the facility during non-peak staff times. If you have additional questions after your visit, ask for a meeting or phone call with an administrator. Be honest about why you are seeking facility care and about the care needs of the person with FTD to better understand the facility’s approach and ability to provide care. Remember that you are and will continue to be an essential member of your loved one’s care team.

AFTD has developed a list of questions to help guide you in this process. The questions are available as a printable pdf flyer that you can take with you on facility visits.

Considerations for Facility Care Options document

If you have additional questions or need further support, the AFTD HelpLine is here to help. Contact 1-866-507-7222 or info@theaftd.org