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June 10, 2021

Navigating Dementia

Written by Kimberly Felice, CCO, Visiting Angels Tallahassee

Greek philosopher Heraclitus said the only constant in life is change. Few sentiments better describe the experience of caring for a parent or loved one as they age. Physical appearance, capabilities, behaviors, likes and dislikes can all become altered traits as we age. These changes are particularly noticeable for those diagnosed with dementia. Navigating the changing waters of a dementia diagnosis can be overwhelming; however, resources are available to help understand, process, and manage a dementia diagnosis.

Person-Center Care Approach

One resource is found in the work of Thomas Kitwood, a social psychologist. Kitwood helped develop a revolutionary method called the Person-Centered Care Approach (PCCA) to reframe how we approach dementia. It places high value on the person with dementia, not the person with dementia. Personhood, unique needs, and individualized care are foundational to PCCA. This allows loved ones to remain at the center of the care plan. 

Within PCCA, treating people with dignity, compassion, and respect as well as positivity and reality validation all hold significant weight. Research on this approach revealed that agitation and negative emotions are reduced. Therefore, they also experienced an overall increase of well-being and quality of life. A retirement community closely aligned with this approach of navigating dementia is Beatitudes, in Phoenix, AZ. Trained in this method, their staff offers individualized care for each member of their community. As a result, they continue to foster an encouraging and comforting environment.

Examples of Using PCCA

By giving power back to seniors, they are able to play an active role in their day-to-day lives. This results in increased enjoyable moments throughout the day. Simple choices such as picking a movie or choosing an activity can mean the world to someone with dementia who may feel that all control is lost. Additionally, studies show the endorphins we receive when enjoying a moment or activity last well beyond the activity itself, increasing the longevity of positive feelings.

Another tenant of PCCA achieved by the Beatitudes staff is reality validation, instead of denial or re-orientation. For those with dementia, thought processes may not be linear. Memories shift over time and even whole identities can change. Instead of taking a ‘no’ approach or consistently denying their reality, further adding self-doubt to an already fragile existence, staff members play along with the delusion, indulging in their memories instead of constantly correcting or negating them.

Applying PCCA as a Caregiver

Imagine for a moment a reality wherein you are constantly told what you thought or remembered was simply wrong. Understandably, this would be extremely difficult for anyone. When applied in a safe environment, the PCCA approach helps caregivers understand the nature of dementia and adjust to the diagnosis. It can even make the diagnosis more manageable, and more enjoyable, both for you and your loved one.

The constant nature of change, though fearsome at times, should be a welcomed part of life. With change comes possibility, the prospect of new, an opportunity to see the world through someone else’s eyes. When navigating dementia, you too can change as your loved one changes. Being flexible in the face of dementia, saying yes instead of no, is not giving in. It’s giving yourself permission to truly acknowledge, understand, and adapt to your loved one’s new understanding of life – changes and all. 

Continued readings:
  • Dementia Reconsidered: The Person Comes First. Thomas Kitwood; published 1997.
  • The Sense of an Ending: An Arizona nursing home offers new ways to care for people with dementia. Rebecca Mead; The New Yorker, published May 13, 2013.
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