Five years ago, before the early symptoms of Alzheimer’s set in, Frances Vittum was lively, energetic and young for her age, a dedicated mother and wife, a passionate gardener and a gifted homemaker with a flair for style and design.
“She was the type of person that, if friends came over and she had an onion and a pound of hamburger, she would make a great, full-course meal for everyone,” said her son, Michael Vittum, Jr., who is 49 and lives in Brewer. “She loved nothing better than to make massive meals for everybody.”
The wife of a state trooper who was often away from home, Frances was “very self-sufficient,” keeping close tabs on her two growing sons. When they were older, she worked as a school cook and later as a window dresser and salesperson in a popular Bangor home decor shop.
“She was a very capable, creative person,” Michael said.
But in her late 60s, Frances started to change.
“You think at first it’s just old age,” he said, “but, really, she was still fairly young.” For example, though she had always been inventive and enthusiastic in the kitchen, Frances suddenly couldn’t remember how to cook an egg.
“We’d find her in the kitchen, just staring at a recipe and not knowing what to do next,” he said.
Then she started losing things, and hiding things, including money. They found her purse stashed in the oven, clean laundry stuffed into the kitchen cupboards. She took to carrying all her jewelry in her pockets so family members wouldn’t steal it.
Later, she began wandering, sometimes storming out the door in a huff over some perceived criticism and other times just slipping out quietly to wander the Brewer neighborhood where she and her husband, Michael Vittum, Sr., lived. She was fearless of traffic, and once was found crossing five busy lanes at rush hour. She grew delusional, convinced that her sister Anita, who had died years earlier, was her daughter and being held captive in a neighbor’s basement. She would sometimes march over to the neighbor’s house and pound on the door, angrily demanding the release of her daughter.
By this time, Frances had been diagnosed with Alzheimer’s disease. Despite the loving oversight of her husband and now-adult sons, despite the support and understanding of friends and neighbors, her behaviors worsened to the point that she could no longer be cared for safely at home.
“My dad felt like a failure,” Mike Jr. said. “But you just can’t watch someone every single minute of the day and night. Sometimes you have to go to the bathroom. You have to go to sleep.”
About a year ago, Frances Vittum’s family made the tough decision to move her into Woodlands Senior Living, a locked “memory-care” facility in Brewer. And they became committed advocates for Alzheimer’s, dedicated to boosting research funds, family support services and public awareness about this merciless disease that affects millions of Americans, that steals away their memories, their independence and their lives, and for which there is, still, no cure.
What do we know?
More than 5 million Americans are living with Alzheimer’s disease, which is the leading cause of dementia. The number of cases could rise as high as 16 million by the year 2050, according to the Alzheimer’s Association, which predicts that this year Alzheimer’s and other forms of dementia will cost the nation $259 billion.
In Maine, an estimated 26,000 people have Alzheimer’s. Most are 75 or older. Caring for Alzheimer’s patients in 2016 cost the state’s Medicaid program $180 million, much of it for specialized nursing home care. Additionally, many Maine families care for a loved one at home as long as possible, often at great sacrifice, without receiving any payment.
Early symptoms include general forgetfulness, especially the ability to recall recently learned information such as the name of a new acquaintance. Over time, symptoms worsen to include episodes of disorientation to time and place; confusion about events; the inability to carry on a coherent conversation; suspicion toward family, friends and caregivers; and behavioral changes such as aggression or withdrawal. In its final stages, Alzheimer’s causes profound memory loss; the inability to recognize or respond to loved ones; an inability to walk or care for oneself; and an inability to speak or swallow.
Alzheimer’s is considered a terminal diagnosis. Medications can help slow the progression of the disease in some people, but there is no cure and no reversing of symptoms. Palliative care aimed at maintaining safety and comfort while minimizing risks and complications is generally considered the best clinical approach to managing the disease. As Alzheimer’s patients near the end of their lives, typically four to eight years after diagnosis, many will qualify for hospice care, either in their own homes or in a nursing facility.
Scientists know that people with Alzheimer’s develop certain “bio-markers,” including microscopic deposits of a protein called beta-amyloid in their brains, along with strands of another protein, called tau protein. The disease is also marked by brain tissue inflammation, the death of brain cells and pronounced shrinkage of the brain over time.
What triggers these changes is still not well understood, though researchers have identified specific gene variants that are linked to a higher risk of developing the disease, perhaps in concert with environmental factors. They have also found a group of genes that appear to directly cause rare cases of familial, or inherited, Alzheimer’s, which account for fewer than five percent of Alzheimer’s cases worldwide.
Hope in treatment research
In Bangor, psychiatrist Clifford Singer said there’s reason to be hopeful that new technologies and therapeutics are on track to improve the timely diagnosis and management of Alzheimer’s.
New scanning technologies can detect the early buildup of amyloid deposits and tau protein strands in the brain long before patients develop symptoms of Alzheimer’s. These scans are not yet approved for routine screening or diagnostics and are used primarily for research purposes. Using these scans, researchers can identify high-risk human subjects to test emerging therapeutic approaches, including new drugs that target the buildup of dangerous proteins.
Early results of clinical trials in Alzheimer’s patients already exhibiting dementia have been disappointing, Singer said.
“We now think these interventions [in patients with dementia] are too little, too late,” he said, “so we are now studying them in patients with mild [pre-dementia] symptoms in hope that they can prevent progression to dementia.” Several clinical trials are under way in Maine, he said, including at Acadia Hospital.
In contrast to the important, cutting-edge technologies and medications being developed and tested by research institutions, Singer said scientists and clinicians also believe that more basic interventions are protective against developing Alzheimer’s disease and slowing its progression. Eating a healthy, plant-based diet, exercising for 30 minutes five days a week and getting six to eight hours of quality sleep each night may be low-tech, but “really does seem to be surprisingly effective,” he said. Staying active socially and cognitively is also protective.
The burden of Alzheimer’s disease falls heavily on the shoulders of family caregivers, who often don’t get the recognition or support they should for the hard work they do. Singer said spouses, partners, adult children, siblings and others who undertake the care of an Alzheimer’s patient often fall victim to feelings of depression, isolation and guilt.
“They are overwhelmed, exhausted and sleep-deprived,” he said, and the decision to place a loved one in institutional care can be wrenching. “People know it’s time when their own health and well-being are compromised or when the person with Alzheimer’s can no longer be cared for safely at home.”
A necessary evil
For the Vittum family, the decision to move Frances into a nursing facility was tough, but it appears to be working out. During a recent visit, she seemed happy and cheerful, chatting animatedly with staff and visitors alike as she showed off the fenced courtyard flower garden and the pleasant bedroom she shares with another resident. It was impossible to follow her train of thought, but that didn’t prevent her from interacting cheerfully and collecting hugs from workers at the facility.
“The staff here is phenomenal. They give her lots of contact and affection,” Mike Jr. said. “She used to be so angry and anxious, but now when we see her she seems happy and content.”
Mike Sr. visits every day, clearly a little at sea without the companionship of his wife of 53 years. “This was a necessary evil,” he said. “She was wandering all the time and getting worse. You have to do something.”
But for the Vittum family, it doesn’t stop there. They and many of their friends have made a commitment to boosting research funding and support services for people living with Alzheimer’s. Mike Jr. is a volunteer advocate with the Alzheimer’s Association and has lobbied Maine’s congressional delegates in person to build support for funding and legislation.
A bill being considered by the United States Congress known as PCHETA — the Palliative Care and Hospice Education and Training Act — has broad bipartisan support, including all of Maine’s delegation, and would enhance support services, build a trained direct-care workforce and expand research at the national level.
He also has lobbied in Augusta to build awareness of the disease’s impact here in Maine, especially on family caregivers.
On Oct. 21, the Vittum family and their team of friends will lace up their sneakers and take part in the 2017 Walk to End Alzheimer’s. Their team has raised a total of more than $8,000 over the past four years and hopes to up their contribution this year.
Mike Jr. said the walk is an important way to raise public awareness and reach out to people who are struggling to cope with an Alzheimer’s diagnosis.
“We need to let people know there is help and support out there,” he said. “We really have to help other families deal with this.”