Living Fully With Dementia
Living Fully With Dementia
While there currently is no cure or effective treatment for the neurocognitive brain changes brought on by dementia, compelling evidence shows that the individual’s perception and understanding of living with the condition as well as how others perceive and treat them impacts significantly upon their emotional and social well-being.
The internet has provided an opportunity for people living with dementia in the early stages to write about their experiences and perspectives of living with a neurocognitive health condition. Hearing directly from people living well with dementia early in the condition is hugely beneficial and provides insights on how best to help them continue to live fully when they need support.
How you relate to us has a big impact on the course of the disease. You can restore our personhood and give us a sense of being needed and valued…Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain our social networks. Christine Bryden in her 2005 book, “Dancing with Dementia: My Story of Living Positively with Dementia”.
Robert Bowles, a retired pharmacist living with younger onset dementia, uses the acronym ASAP to help him continue to live a full and meaningful life. For him, ASAP stands for Acceptance, Socialization, Attitude, and Purpose – accepting he has a progressive neurocognitive disorder, staying active socially because this is important to him, keeping a positive attitude about life, and continuing activities that provide him purpose and meaningful things to do.
Living Fully With Dementia
While there are common hallmarks associated with dementia, the individual experience of it is unique to each person. The experience is impacted by a number of factors including the type of dementia they have, their overall health, emotional and social well-being, their support network, and the environment in which they live. In the early stages of dementia what’s most helpful is emotional support and access to information. The Murray Alzheimer Research and Education Program in Canada produced a video in 2014 about living with dementia by people who have taken a positive, proactive approach [Click here for more information about the video]. The individuals interviewed are not only managing the cognitive changes but continuing to thrive with dementia. A positive, proactive mindset is important for emotional and social well-being.
Individuals living with dementia will experience difficulty coming up with some words they want to use or names and can forget information they have just read. As neurocognitive changes advance, the part of the brain that handles executive function is impacted. Executive function abilities include planning, organizing and working memory. Working memory is responsible for temporarily storing and processing information such as selecting the right clothing for the season or for an occasion.
Executive function also controls the ability to self-initiate meaningful and activities. Thus, an individual with dementia could sit in a room full of interesting things to engage in, but the impaired brain wiring is not able to process that information as things for them to do. As a result, the individual could sit for long periods of time unoccupied and bored and possibly become agitated or frustrated if others don’t help by bringing items to them and getting them engaged.
It can become a daunting challenge for care partners to find interesting items to engage them. FIT Kits® were developed to make it simple and easy for care partners to have a variety of interesting items that are interesting and fun. All Kit items have been extensively research-tested.
The key to success when using any of the FIT Kit® materials is your enthusiasm and mindset. Your attitude and behavior sets the stage for positive and fun interactions. Your sense of fun, humor, willingness to ‘go with the flow,’ and patience helps someone who has dementia continue to experience fun and engagement in daily life.
As dementia progresses, ways to engage a person may need to be modified. For instance, a mathematician who never played cards may now really enjoy a set of playing cards – perhaps not to play card games but rather to group similar numbers together or sort by suit. Someone who enjoyed long hikes may now be quite content with a walk around a block. A walk too far and too long can turn from fun to an overwhelming activity. Carefully observing body language including facial expressions can provide information to know when it’s time to rest or stop doing the activity.For ideas about what they might find interesting and meaningful to do, think about things that bring them joy and happiness. It could be enjoying nature, loving a pet, dancing, putting on lipstick, wearing a special hat – the possibilities are endless…and mostly don’t cost anything. New experiences can be fun too. One daughter whose mother is no longer ambulatory has had lots of fun ‘visiting museums’ online with her.
Each FIT Kit® includes FIT’s exclusive handbook, “Understanding Dementia,” that provides additional helpful information.
FIT Kits® are person-centered tools to help you enjoy time together.