As research and trials continue to bring hope for a day when there is a cure for Parkinson’s disease (PD), there are millions of people that live each day feeling isolated for one reason or another. As we are treating the disease, we must not forget the people that have the disease or the millions of unpaid caregivers who care for them. Whether it is feeling like they cannot do anything, or that friends and even family have abandoned them because of the disease, folks with PD and their caregivers can and do feel isolated. One of the ways we can change that is through activities and engagement. Activities and engagement of any type - leisure or daily living – can have tremendous benefits and help us tear down the walls of isolation.
Using person-centered and person-appropriate activities can provide positive effects for those with PD and their caregivers such as:
Decrease Depression and Improve Self-Esteem
Multiple studies have shown that by engaging in structured activities that allow for success, symptoms of A mood disorder whose symptoms can include a persistent sad or empty mood, feelings of hopelessness or pessimism, irritability and loss of interest or pleasure in previously enjoyable activities. and A feeling of nervousness, worried thoughts and physical distress. can be reduced.
Increase Mental and Social Stimulation
Activities can facilitate social interaction with family and friends. This can be anything from a simple conversation to working a puzzle to deciding what to make for dinner and making it.
No matter what activity is chosen, it must be person-centered and person-appropriate. By person-appropriate, we mean a planned activity that your loved one can accomplish based on their remaining abilities.
Using the “deciding what to make for dinner and making it” example, assume that your wife, who has PD, spent most of her adult life cooking meals for the family. The center of your home was the kitchen. Your wife was always in there chopping, preparing and talking to whoever came through. She loved to cook and took great pride in her meals. The past few years, she spent less and less time in the kitchen even turning down offers from your adult kids and friends to cook something together. Everyone assumed that it was because of the progression of the PD and they were right. It did not mean that her love of cooking was diminished in any way. During one visit, you and your adult daughter are discussing your wife’s PD and the need to get her involved in something. Cooking comes up as it always does during these conversations, so you decide to take a different approach. You ask your daughter to prepare all of the ingredients, chopping, cutting and measuring, for your wife’s favorite meal.
When the prepping is complete, instead of asking, “Would you like to make X?” have your daughter ask your wife to come and help her with a recipe. Set up a chair for your wife to supervise. After your wife agrees, she may begin to help with mixing and stirring the ingredients when she realizes she does not have to cut or do any fine chopping. You see life come back in her eyes as everyone is in the kitchen talking and cooking together. You hear laughter that you have not heard in a long time, while stories are being told of meals and events of the past.
The little things matter. The Four Pillars of Activities are the keys:
- Know Your Loved One
- Communicate with Your Loved One
- Know Routines and Preferences
- Plan and Execute
The social model of care and the consistency of approach, communication and execution of any activity, leisure or daily living, with your loved one is vital to your quality of life.
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
Scott Silknitter is the founder of R.O.S. Therapy Systems and co-author of the new book series, Activities for the Family Caregiver. For more information about Scott or the R.O.S. family of companies, visit: www.ROSTherapySystems.com or contact (888) 352-9788.