Profiles From the Front Lines of Dementia Care
Carrie Hayes’ dedication to working with the elderly began as a nurse’s aide in her teens and endured throughout a nursing career that spanned three decades. Now, as assistant resident care director at Avita of Newburyport, a Northbridge assisted-living memory care community, she shares that passion with her fellow staff members and the families of residents.
A certified dementia practitioner, Hayes provides training for every staff member in the habilitation curriculum provided by the Alzheimer’s Association. This training method runs counter to guidelines at the nursing home where she worked in her youth, when she was taught to correct and reorient memory-impaired residents to the current place and time.
While that approach is well-intentioned, Hayes says she resisted this approach because it causes residents to relive traumatic loss and grief and to suffer further confusion while processing “new” information. Habilitation therapy focuses on making an emotional connection with an individual with memory loss, and then maintaining that positive feeling without the use of unnecessary medication.
“We enter into their world, as opposed to expecting a resident to come into ours,” says Hayes, who has worked at Avita of Newburyport since the residence opened in 2015. “I tell our staff and families, ‘They might not know your name, but your voice and your touch are constants in their life that bring them comfort.’ ”
At Avita, residents live in homelike apartments situated in three different neighborhoods — Spring, Summer and Autumn — that are complemented by a secure courtyard with pathways to maximize the residents’ sense of freedom. Programs emphasize meaningful social engagement, such as intergenerational activities, workshops with an artist in residence, and a chorus that performs in the community. Residents also have the opportunity to attend religious services, dine at restaurants and take field trips.
Recognizing that family members often suffer more emotionally than the individual with dementia, Hayes says spouses, children and grandchildren of residents are welcome to join a field trip or spend an occasional night. She co-leads a monthly support group for family members of loved ones with dementia that is open to the public. The Virtual Dementia Tour, a guided simulation tool, is available to anyone seeking awareness of the importance of direct eye contact, low noise levels, a calm demeanor and a human touch.
Hayes says she feels “privileged to take care of someone at the end of a long life and help their family make it beautiful.”
“With dementia and Alzheimer’s disease, it’s the long goodbye that’s so painful, but I can’t imagine doing any other type of nursing anywhere else,” Hayes says. “Our residents have taught me patience and touched my heart, and when I go home, I know I’ve made a difference for them, too.”
Avita of Newburyport
Tammy Naugler, memory care director at Wingate Residences at Haverhill, says one of the most frequently asked questions about her work is, “How do you do it?”
“People assume it must be so sad, and there are sad times,” she says. “But if I can make somebody smile, or if I can help somebody’s day be purposeful, then I’ve done some good.”
Open since October 2018, Wingate Residences at Haverhill offers assisted-living apartments and a memory care community called The Neighborhood. Designed with input from the Alzheimer’s Association, innovative features include adaptive lighting to minimize “sundowning,” a term used for the worsening confusion and agitation experienced by those suffering from dementia in the late afternoon and evening.
To educate families about this phenomenon and other dementia-related complexities, Wingate Residences at Haverhill hosts a six-week Savvy Caregiver Program. In addition, Naugler co-hosts a monthly meeting to update families about new resources while enabling them to share lessons learned and lend support to one another.
In fact, Naugler’s outreach efforts begin even before a family’s loved one becomes a resident. During in-home assessments, she shares the range of Wingate’s care options, as well as various ways to contribute to a successful transition. While a natural inclination is to purchase new items, for instance, she recommends furnishing a resident’s new apartment with lots of family photos and other familiar items, such as a well-loved bedspread.
Clothing is another important but sometimes overlooked vehicle for promoting comfort and independence. Adaptations include elastic waistbands, shirts without lots of buttons, and shoes that fasten with Velcro instead of shoelaces. Because overhead showers can be frightening, bathrooms in The Neighborhood are equipped with walk-in bathtubs, built-in seats and handheld nozzles.
Despite the best preparation, however, nearly all individuals with dementia experience behavioral changes such as paranoia or increased aggression.
Special dementia programming is interactive and sensory-based to stimulate cognition, spark memories and improve quality of life. According to Naugler, activities can be customized based on a resident’s interests, such as gardening or cooking a familiar food to stimulate nostalgic aromas.
Residents are so active, in fact, that Naugler says her “one wish is that families wouldn’t feel so guilty.”
“I’ll hear someone say, ‘My mother took care of me all of my life, and now I’m not taking care of her.’ But at home, they’re watching a lot of TV, whereas this morning, our residents did tai chi and then listened to a singer with their friends and refreshments,” Naugler says. “This is a safe place where their loved one is well cared for. When they come and see they’re happy and doing well, it’s like a weight is lifted.”
Wingate Residences at Haverhill
As a social worker at the nonprofit Edgewood LifeCare Community in North Andover, Jennie True matches residents with independent living options, in-home assistance, on-site health care and other support services according to their changing needs.
A growing part of her role is educating families about care options for dementia, while also guiding them in effective communication with loved ones who are experiencing declining mental function.
The educational component of her duties continues to grow as Edgewood — A LifeCare Community offering predictable monthly rates regardless of the level of care required — is expanding its Woodlands Inn residences for memory care and enhanced living in order to meet demand. Both 10-suite dwellings introduced last year are full, and a third dwelling is expected to be available Spring 2019.
“It speaks to the increase in awareness of dementias, including Alzheimer’s disease, that people are planning ahead for a greater level of care,” True says. “It’s scary for those going through these changes, and for their family members, as well.”
At Edgewood, the first retirement community in the nation to receive the Hearthstone Foundation’s “I’m Still Here” Center of Excellence certification, the staff is specially trained in caring for those with Alzheimer’s disease. While the occasional forgotten name or misplaced item is typical of aging, disruptive declines in memory, thinking and reasoning skills characterized by the brain disease are not.
As the disease progresses, True counsels family members to put a loved one struggling with recognition and routine at ease by smiling, making eye contact and introducing themselves and the task: “Hi, Mom. It’s your daughter, Jennie. We’re going to sit down now and have breakfast.”
Even after 18 years in the geriatric field, True says she is “astounded” by the ability of those with memory issues to recall music and even lyrics. Other activities that can be joyfully shared include talking about past careers and hobbies, looking at picture books, reminiscing with photo albums and engaging in a repetitive task — such as folding clothes — that produces feelings of productivity.
Recognizing the importance of continued exercise and socialization, True is available to help residents organize an activity calendar and coordinate whatever help is required to attend the programs. She also leads support groups for residents in the early stages of memory loss, residents caring for their spouses, and family members of residents at all levels of care.
An additional source of respite is a social day program for people with memory impairment that’s open to community members every day of the year.
“There is a lot of fear about the future,” True says, “but people with dementia are the same people, and they still live meaningful lives.”
Edgewood LifeCare Community
North Andover, Mass.