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Enjoy Time Together - Tips for Adjusting Activities

People with FTD develop difficulties in communication and behavior that affect participation in employment, family life and leisure activities.  While symptoms impact all types of activities, it is important to find ways to continue to enjoy spending time together. It is the relationships developed through those activities that are most precious and maintaining the relationship will combat the loneliness FTD can bring.

  
Your greatest strengths are knowing the person well over a long period of time and understanding how FTD is changing his abilities.   If you build on strengths and interests, adapt how you approach activities, and adjust expectations, your time together can be enjoyable. 
 
Some suggestions that may help include:   

• Think about what activities have been valued most by the person over the years. Go back to youth and young adult days, career and family life.  Note memories, information and stories that capture the essence of the person.  
• Look at how current symptoms affect activities: Does the person spend time alone or withdraw from others? Has he lost interest, or does he have difficulty joining in? Does he become upset in crowded areas or loud groups?  Do his uncharacteristically rude comments put others off?   
• Plan ahead.  It may take longer to get started or to get places on time.  Having to rush or adjust to unexpected changes can be difficult. 
• Develop a daily routine that includes predictable social activities with family or friends.
• Choose activities with less noise, fewer people and a quieter environment to reduce confusion or overstimulation; one-on-one activities may be most effective.
• Provide directions one step at a time to improve understanding and be patient, processing information can take longer.
• With the loss of executive function and planning, the person with FTD cannot always initiate an independent activity.  Do it with them for a few minutes to get them started.  
• Creativity is the key. The activity, the environment and the level of support must change.  The person with FTD cannot control symptoms of the disease.     
• FTD is not funny, but sometimes there is humor in the situation you find yourself in.  Laugh! It's good for the soul.    
• What works this week may not work six months from now; the rules of the activity can change.
• Adjust expectations -- the goal is not to do things the way you used to; the goal is to create a positive atmosphere for both the person with FTD and the caregiver.

It can feel impossible to keep up with the changes, but keep trying new approaches and remember that each day gives a new chance for success and every small victory deserves a celebration.  

Celebrate Valentine's Day "With Love!" AFTD launched its 2nd annual online fundraising campaign called "AFTD's With Love Campaign 2013" on January 22.  Just like last year, supporters can create a "With Love" fundraising page to tell their own FTD story and engage their circle of family and friends in supporting AFTD's mission. It's a great way to celebrate Valentine's Day and honor loved ones. The campaign  is already underway, and several generous donors  have agreed to match the first $21,000 raised!  To participate, visit our "With Love" page for details.

Other AFTD-Team Events:

• Ongoing: Hiking for Corticobasal Syndrome, Appalachian Trail (Jim Tabor)
• February 21: H'ArtSong - a Celebration of the Arts, Hartsville, SC (Anna Hill)
• May 19: King of Prussia 10-Miler/5K Run & Walk - AFTD Staff will participate in this event in Philadelphia and encourage other local families to join us!  Don't live near Philly?  Visit www.runningintheusa.com to find an event in your area and host your own local team for AFTD!  Let us know about your plans, and AFTD will be glad to help publicize your efforts and recruit team members.
   

More information on grassroots fundraising can be found on our website...simply click here.

Remembering: My Dad is Sick 

In dealing with my dad--who is going on five years post diagnosis, consistently behaves inappropriately and can't seem to do the simplest of tasks--I constantly remind myself, every single time I get frustrated, that he cannot help it.  I think we often get frustrated

Shoshana Derrow

and think that our loved one just isn't trying hard enough, or is potentially milking the disease for attention, instead of thinking of them somewhat like very, very young children who literally do not know any better and cannot help their behavior.  It's my experience that my dad can no longer be taught--his behavior can no longer be changed, and he no longer understands (at all) when things are pointed out to him as being inappropriate.  So every time I get frustrated, I try to count to 10 and remind myself to have empathy for HIM--not just for my own pain--and realize that he isn't purposefully trying to be hurtful or annoying. 

--Shoshana Derrow