Living Well with Dementia: Valuable Lessons from Kate Swaffer April 14, 2015 | 0 Comments

By Karen Love

This is Part I of a two-part series on “living well with dementia”.


Seven years ago at the age of 49 Kate Swaffer was given a diagnosis of younger onset dementia and told to quit her job, put her affairs in order, and look into long-term care options. This spunky Australian lady decided not to heed the doctor’s advice. “If I had received a diagnosis of a stroke or brain injury, I would have been enrolled in various therapies to address symptoms of the condition. Dementia is the only illness I know of where we are basically told to go home and give up.”

Kate came to label this egregious mentality ‘prescribed disengagement’. Prescribed disengagement™ establishes a mindset for individuals diagnosed with dementia that they have no future and destroys his/her sense of well-being. This mentality lowers a person’s own expectations about how they can live and what they can do, and it lowers other’s expectations about how a person who has dementia can function and live.  

Kate realized the devastating effects prescribed disengagement™ would have on her emotional well-being. “Being meaningfully and positively engaged is essential to humans’ well-being, our ability to be resilient, our motivation to stay positive, and our ability to better manage the emotional toll of the condition.” She decided not to give up or consider any boundaries to what she could do or achieve, and instead has become an active advocate. Kate now speaks all over the world about how to live well with dementia. She was invited last month to speak at the first World Health Organization’s Ministerial Conference on Dementia in Geneva, Switzerland. Kate writes a poignant and powerfully insightful blog about her journey with dementia titled, “Creating Life with Words: Inspirations, Love and Truth,” at http://kateswaffer.com/daily-blog.

Kate is still capable of managing her activities and being involved in things she finds meaningful and interesting. When cognitive changes impact her ability to process the steps needed to engage herself throughout the day, Kate’s family and friends will help her continue to take an active part in her daily life in ways that are interesting and meaningful to her. Kate is an active and social person. This knowledge cues her family and friends about what will continue to be meaningful and fun for her so they can help her live well with dementia when she needs assistance managing daily engagement.  

The majority of people who care about someone living with dementia don’t realize that active efforts to keep the individual engaged are not only needed but are essential to the individual’s emotional well-being.  Most of us are quick to recognize when a person needs help with something obvious such as when we see a person trying to open a door with arms full of groceries, we help by opening the door for them. The realization someone needs assistance is not as obvious when the help needed is a result of invisible brain changes. When an individual living with dementia is no longer able to process the cognitive steps for staying meaningfully engaged, they can become marginalized and diminished without help.

A study conducted by Harris Interactive in 2012 found that a little over 10 percent of care partners realize the importance of helping keep the individual actively engaged throughout the day. With other caregiving duties, care partners are challenged being creative and coming up with ways to engage them. FIT Kits® were created to address this by providing fun, interesting, and research-tested engagement items. With a wink to Kate Swaffer, FIT’s dementia products are prescribed engagement!  

 

Be sure to tune in for Part II of “Living Well with Dementia” in next month’s eNewsletter.