Recent statistics by the World Health Organization reveal that more than 55 million people worldwide are living with dementia. Cognitive brain disorder is perhaps one of the most stressful aspects of aging. Reaching beyond the usual consequences of growing older, dementia delivers a host of other problems: physical, psychological, social and economic. These not only affect the person living with dementia but also their family members, who often serve as caregivers.
When it comes to caring for individuals living with dementia, Presbyterian SeniorCare Network’s Dementia Care Center of Excellence and its Dementia360 program stand out. Both Carrie Chiusano, executive director for the Dementia Care Center of Excellence and Amy Kowinsky, executive director of the Dementia360 program, are passionate about the work they do.
“Presbyterian SeniorCare Network’s Dementia Care Center of Excellence encompasses all the dementia care across our network from Erie to Washington, PA,” said Chiusano. “Dementia360 is an important element of our program that reaches out into the community.”
The story began on July 1, 1991, when Woodside Place of Oakmont opened its doors to people living with dementia. “It was one of the first in the country and, honestly, led the world in caring for this population,” said Chiusano.
Catering to individuals living with dementia in the early to middle stages of their journey, Woodside Place presents a social model focused on the philosophy of helping the person thrive. “We live in their world as soon as we step over that threshold,” said Chiusano. “We don’t focus on what they can’t do; we encourage them to explore their surroundings, focusing on their strengths.”
Dementia360 extends the Woodside Place philosophy into the community and the homes of families caring for those living with dementia. “We want caregivers to understand that they are not alone in this journey,” said Kowinsky. “We can help.”
Designed to support families who want to keep their loved ones at home as long as possible, the focus is two-fold. “We want to assist them with the goal of keeping their family member home in a way that is both safe and comfortable,” said Kowinsky. “That comfort encompasses both the person living with dementia and the caregiver.”
The program begins with a comprehensive assessment by a care coordinator. “Our coordinators get to the know the family to determine several things: how dementia has affected their lives, what’s working well, and areas where they are struggling,” explained Kowinsky.
One common mistake caregivers make is the perceived need to correct and reorient the individual living with dementia. “Well-intentioned families think if they keep correcting the person, they will remember,” said Kowinsky. “They may remember at that moment, but five minutes later, they’ll forget again.”
This futile tactic breeds frustration for both parties, with family members experiencing feelings of grief and loss as they watch their loved ones slip away. “When a person living with dementia says the sky is green and the caregiver continually says ‘No, it’s blue,’ the natural response is to get agitated,” said Kowinsky. “It’s not helping; it’s hurting you and it’s hurting them.”
Chiusano agreed. “If you’re constantly correcting a person, they are going to withdraw and not want to be a part of the conversation any longer.”
Dementia360 also aims to change the conversation about dementia by helping families recognize the positives in the situtation. “Conversations center around what the individual living with dementia can do rather than what they cannot,” said Chiusano. As dementia progresses, adjustments are made.
“Family members often vow to take care of their loved ones,” said Kowinsky. “As a result, they will keep holding on to their own detriment, rather than ask for help.
“If you’re questioning if the time is right, that’s the perfect time to call us,” she added. “We can teach you new skills and approaches.”
Eventually, the time at home may come to an end, which may mean moving the individual into another safe, comfortable place. “Families who have had the difficult decision of moving a family member into Woodside Place now express rave reviews,” said Kowinsky. “One man even exclaimed, ‘My wife does so well there, what did you do?’
“Sometimes they think it’s all magic and pixie dust,” she laughed.