Caregiver Corner: Person-Centered, Person-Appropriate Activities and Parkinson’s Disease

Many families and caregivers seek the answer to the question, “What should I do with Dad? He just wants to sit and watch TV all day.”

The simple answer - whatever he enjoyed doing throughout the course of his life, of course!  Was it golf, puzzles, coin collecting, dancing, writing short stories, or creating wonderful pieces of art?  It does not matter what the “thing” is. What matters is finding a topic for an activity that interests him based on personal preferences (person-centered). This is the First Pillar of Activities – Knowing Your Loved One. With that knowledge, you can modify an activity based on his remaining abilities so that he can engage (person-appropriate).

Everyone’s Parkinson’s disease is different. It can be a challenge sifting through items to find what works best for you and your loved one. The key is that you try. An emerging theme across various publications and associations is the need for activities and engagement for a better quality of life for all. Please do not give up, and do not let your loved one give up either.

To move forward with any type of activity or engagement, we must accept and understand that activities and engagement can be many things such as listening to music, watching and discussing a movie, telling stories, reminiscing, baking or even folding clothes. An activity is anything your loved one might enjoy based on a topic they recognize and have a preference for.  This is where you and all caregivers must start. Ensuring that all caregivers get to know your loved one - their hobbies, interests, likes, loves, careers - these are the foundation for communication, planning and engagement. 

One proven tool to help accomplish this task is a Personal History form. This form helps organize a lifetime of accomplishments, likes and pastimes. From favorite foods, to things they liked to do, this form should be filled out by as many friends and family as possible because everyone has a different memory of your loved one.

The information should be available to all caregivers. Why?  Because if they do not know where to begin or if they do not feel like they have something in common to talk to your loved one about, connecting and engaging will be difficult.

Let us use golf as an example. Your loved one’s PD has progressed, and they can no longer make it out to the golf course to play on their own. That does not mean that the sport is lost to them forever. There are many activities related to golf that you can engage them in:

  • Take an outing to a driving range and let them coach you
  • Play golf trivia games
  • Play golf video games
  • Discuss the best place in the world to golf
  • Work on a golf-themed puzzle

Knowing your loved one is the start – The First Pillar of Activities and Engagement. Once you know the person and what they enjoyed throughout their life (person-centered), activities can be chosen based on their abilities (person-appropriate).

If you need more information, please check our book designed for families of those with PD: Activities for the Family Caregiver: Parkinson’s Disease – How to Engage, How to Live.

Alisa Tagg, BA, ACC/EDU, AC-BC, CDP, is the President of the National Association of Activity Professionals which has been the training and education authority for quality of life and leisure engagement in senior care since 1982.  Scott Silknitter, inventor, author, and speaker is the founder of R.O.S. Therapy Systems which began as a 2010 project to help his mother and father in a 25-year battle with Parkinson’s disease and dementia.

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