The early signs were subtle.
About seven years ago, Dr. John Newby began noticing that his wife, Venus, would sometimes get lost while driving or forget the names of people she had known for years.
Before too long, it became clearer that Venus was suffering from early-onset dementia, said Newby, of Harpswell Neck. Soon after, she was diagnosed with Alzheimer’s disease.
“It was strange for all of us because she was so young,” he said in a recent interview. “She was only 53.”
Newby left his job as a physician to focus on the care of one person: Venus. The experience also inspired him to write a book, “Brownies and Coffee,” which is available at major booksellers and at browniesandcoffee.com.
“It’s a cookbook; it’s an exploration of caregiving; it’s a love story; it’s science,” he said. “It’s filled with facts, too.”
Newby is among a growing number of Harpswell residents who are caring for a loved one with dementia. It can be a physically and mentally draining experience, but he and others say caregivers don’t have to go through it alone.
One local resident offering assistance is Elizabeth Davis, who runs the Dementia Caregivers Book Group, a support group that meets at 10 a.m. every Tuesday at the Harpswell Town Office.
The nonprofit Harpswell Aging at Home also provides help in the form of free meals, a ride service, affirming notes and phone calls, and even free home repairs for those below a certain income threshold.
“If people meet the income guidelines, the (home repair) team will come to the person’s house and can add things to make the house safer — ramps, railings, smoke detectors — all of which can make things easier for both the patient and the caregiver,” said Lili Ott, co-chair of the organization’s Steering Committee.
A growing concern
Roughly one out of 10 Mainers over age 65 suffers from Alzheimer’s, according to Drew Wyman, executive director of the Alzheimer’s Association, Maine Chapter. That’s about 30,000 residents.
The number of unpaid caregivers to those residents is even higher — more than 50,000, according to Wyman. They provide an estimated 87 million hours of unpaid care annually, valued at around $1.9 billion.
More than 60% of dementia caregivers in Maine have their own chronic health problems to contend with, according to the Alzheimer’s Association. About 38% suffer from depression, and 13% are in poor physical health.
Dementia caregivers often neglect their own care, a growing concern that Wyman, Newby, Davis, Ott and others are trying to help alleviate.
“You have to put your own oxygen mask on first … the same applies when you’re caring for someone with dementia or Alzheimer’s,” Wyman said in an email. “You will only have the patience and energy you need by taking care of yourself, otherwise you could be short-tempered, forgetful, and you wouldn’t be showing up for the person the best you possibly could.”
Davis said it’s impossible to know exactly how many Harpswell residents are caring for a loved one with dementia or Alzheimer’s. But she said it’s likely a significant number, given that Harpswell has the oldest median age of any town in Maine, the oldest state in the nation.
“The largest risk factor is age,” she said, adding that such diseases affect roughly one-third of all people over age 85.
Removing the stigma
Davis, a trained hospital chaplain and emergency medical technician, said she worries that many dementia caregivers in Harpswell need help but are reluctant to seek it out.
She got involved in providing support to caregivers after her husband was diagnosed with Alzheimer’s about five years ago. “The choice I made was to lean into the journey and learn as much about it as I could,” she said.
Davis described the “ambiguous loss” that caregivers can experience when their loved one is still present physically but not mentally. Her support group aims to help them manage grief, solve problems, share wisdom, and read and discuss books on caregiving.
“One of the biggest struggles we have is against the stigma surrounding dementia and cognitive impairment,” she said. “I think it’s a lot like the way we used to talk about cancer in the 1950s, where we couldn’t say the word and would only whisper about it. I want to be a part of the movement that changes the way we think about dementia.”
Davis said about 15 residents regularly attend her weekly support group. She would love to see more people attend, learn what resources are available, and come to value their own care so they’ll be less likely to experience burnout.
“Often, we think where we’re going to find help is from our families,” she said. “That’s not often the place from where the help comes, so sometimes you have to go further afield. If the answer is no, you might not be asking the right people for help.”
Available resources
Wyman said the Alzheimer’s Association offers a free 24/7 helpline for caregivers at 800-272-3900. The association also has a webpage full of resources and information at alz.org/help-support/caregiving.
The helpline is staffed by professionals who can provide information about memory loss, Alzheimer’s disease and dementia; what to do after you or someone you know receives a diagnosis; medical care needs, including medication and treatment options; and many other common questions.
Davis said another group she found particularly helpful when she first learned about her husband’s diagnosis is the Dementia Action Alliance, a national nonprofit that offers help and support to caregivers. Its website is at daanow.org.
Davis said locals are welcome to contact her for help connecting with available resources, including her support group. She can be reached at 207-310-4418 or eallerton237@gmail.com. She said all discussions are kept strictly confidential.
Ott, of Harpswell Aging at Home, said those with questions about her group’s offerings for caregivers and those with Alzheimer’s or dementia can contact Tom Mahoney through the Town Office at 207-833-5771 ext. 108.
Another helpful local service noted by Davis and Ott is Bath-Brunswick Respite Care, which has a day program that provides “joyful hours for participants and time off for caregivers,” according to its website at respite-care.org. More information can be obtained by calling 207-729-8571 or emailing info@respite-care.org.
Ott said Harpswell Aging at Home offers free rides to and from the day program, at 9 Park St. in Bath. The day program itself costs $80 for a half day and $160 for a full day, but the website says, “No one will be turned down on the basis of inability to pay.”
The Anchor is inviting reader feedback on this article. To fill out a brief survey, go to bit.ly/anchorfeedback.
