Caring for and living with a person with dementia is challenging but it does not have to overwhelm the caregiver, Cyndy Luzinski, Executive Director of Dementia Together, told the Estes Valley Voice. “We teach practical strategies for life-long well-being,” she said, adding, “We turn ‘I’ into ‘we.’”
Dementia Together works with both the individual with dementia and the at-home caregiver. They are called “care partners,” and Dementia Together shows how their lives can be improved through knowledge, acceptance, and learning new skills.
Dementia is the medical term for any condition in which a person loses the intellectual function they once had. Alzheimer’s disease is just one form of dementia. Dementia Together focuses on solutions, not on studying any particular illness.
Dementia Together offers workshops, seminars and regular peer-support meetings based on the SPECAL® model, first developed in England. “We consider dementia to be a simple disability that can be managed,” Luzinski said. “In dementia, the facts of what happened are not stored, but the feelings are stored.” Once this concept is understood and accepted, the SPECAL® strategies make sense.
In the standard model of medical care and home care for persons with dementia, the person with the disability of dementia is given instructions, restricted, and often reprimanded, and treated as a child incapable of understanding. The caregiver’s focus is in trying to get them to function as they once did.
The Dementia Together approach is to accept the situation as it is and discovering how to thrive, not just survive.
A person with dementia is unable to store new information from current experiences. What they do store are the feelings they have about those experiences. Their remote memory is usually preserved, so they remember how they used to be. What is past is experienced as present.
Luzinski gave several examples.
After a lifetime of driving a car, the person with dementia is no longer able to drive safely and may have been in an accident. They have not stored the information about that accident, and only remember that they have driven a car their entire life. Therefore, they see no reason they should not be driving.
Luzinski cautioned not to say “You had an accident. You can’t drive anymore.” Instead, she advised emphasizing the shared experience, saying, “I know you hate it that you can’t drive any more. I hate that too.”
Care partners inevitably have serious conflicts over autonomy and decisions. Luzinski teaches care partners how to deal with these conflicts by acknowledging their feelings without either agreeing or disagreeing. “Use the information that they have,” she said. “Give them answers that make sense on a feeling level.”
“Let them lead the way,” she said, acknowledging that this approach is counter intuitive. “You let the person who is no longer storing the facts, win.”
While these approaches help care partners cope, they inevitably experience frustration, anger, and complacency, known as “compassion fatigue.”
“It is not a character flaw for you to be tired,” Luzinski said.
Dementia Together helps care partners develop strategies for avoiding and combating compassion fatigue. She advises keeping a journal. “Keep track of what happened today that worked, where I made a difference,” she said. “There is no right or wrong—just what works.”
The Estes Valley Community Center will host a Dementia Together conference Oct. 23, from 8:30 a.m. to 2 p.m. This is an opportunity to learn more about dementia care, support groups, and community resources. Conference attendance is free.
More information and the form to register for the conference can be found at https://dementiatogether.org, or by calling 970-305-5271.