If someone were to call me “demented,” I would most likely feel hurt or upset. Given the meaning of dementia – away from the mind – it might depend on the day. With respect to Alzheimer’s disease or other forms of cognitive impairment, dementia is not a fair word, nor is it a condition literally possible as long as a person is breathing without artificial life support. Alzheimer’s disease (AD) is the most common form of dementia and is characterized by a person’s inability to manage their own affairs due to cognitive impairment. What would it take for us to start using the term “rementia”?
Alzheimer’s disease is a difficult process to witness. My upbeat attitude does not preclude me from seeing the suffering on the part of the family witnessing dramatic changes or the baffled individual who cannot recall what has happened during the past hour or perhaps the past 10 years. But AD should not be synonymous with “away from the mind.” I know plenty of persons with AD who are able to express love, share feelings, and have fun. They are perfectly mindful in the precise moment. Let’s explore living life at “new” normal, emphasizing what is present rather than what is lost. A life with AD is a life worth living.
Caregiving with a rementia approach supports personhood throughout the progression of Alzheimer’s disease. A woman with AD is never less than a whole person. She is different, but she never leads a partial existence. “To be remented is to experience re-establishment of the individual self: to hold beliefs, practice values and have freedom of expression.” (King p. 13) Rementia caregiving promotes living with meaning and purpose and promotes a“return to the wellness of the mind.” (King, p. 13)
The primary tool in rementia caregiving is person centered care. Caregivers encourage freewill by respecting preferences, choices, and abilities. While absolute dependence can be expected during the end stages of AD, independence should be encouraged until then. Caregivers tend to overdo, which leads to burnout, while the care receiver is yearning for shared responsibility. Always with safety in mind, caregivers can bring relief to both sides of the caregiving experience by opening possibilities for partnership. Remember not to expect the clothes to be folded perfectly or the dishes to be spot free.
Dining with a group of residents at a care community, I had a discussion about Alzheimer’s disease with a woman who, unknowingly, has AD. She said “It’s just a problem with memory loss. That’s all.” If we all held this simplified opinion, perhaps the word dementia would disappear.
Blog by Kassandra A. King, the author of “Getting REAL About Alzheimer’s: Rementia through Engagement, Assistance, and Love.” Ms. King is the owner of Alzheimer’s Connection, provider of professional rementia care training for the caregivers of SYNERGY HomeCare in La Mesa, CA, and Broomfield, CO.