Dementia a Heartbreaking Reality for Many Montanans
Laurie Miller swears she’s not one who is prone to cry in public when talking about the issues of everyday life.
But she couldn’t help but tear up the other week when talking about Gary and Marie.
A registered nurse and manager with ResCare Home Care and based in Great Falls, Miller’s voice cracked recently when talking about an elderly couple struggling to get by.
“I got a little sappy,” she said later. “Your heart breaks for these individuals. I cannot imagine walking a mile in their shoes.”
Gary and Marie, both 79, have been married for 60 years and live in northwestern Montana.
Last year, Marie suffered a stroke and now has dementia.
Gary works a couple of jobs outside the home to make ends meet and help pay for the care Marie desperately needs, Miller said.
Gary, who asked their last name not be used in this story to protect their privacy, said in a telephone interview from his home that he doesn’t mind the challenge, adding he likes to work.
He mows lawns and provides maintenance for apartments with such tasks as fixing the locks.
Gary said at one time he put Marie in a nursing home that costs $7,000 a month. She became combative and was removed from the facility.
“She hit somebody and they put her in a hospital and said they would not put up with that,” Gary said. He brought her back to their home.
“I am here alone by myself,” he said. “I can’t get out and do anything; she has to have full-time care.”
And applying for help has been challenge.
“Medicaid is so complicated, it would take a raft of Philadelphia lawyers to figure it out,” he said.
That’s where Miller came in. Gary said she was able to guide him through the maze, and he now gets help for 30 hours every two weeks. When the aide comes to be with Marie, he goes out to raise money.
“She’s been wonderful,” Gary said of Miller. “I’ve learned more from her than all the state people put together.”
Gary and Marie are part of a growing number of Montanans dealing with Alzheimer’s and dementia.
On June 20, the Montana Alzheimer’s/Dementia Work Group, a panel of about 40 volunteers who met periodically over a two-year period, unveiled the Montana Alzheimer’s and Dementia Action Plan, saying that Montana’s health care system for people living with Alzheimer’s and dementia is poorly coordinated and does not meet the needs and desires of Montanans.
In 2016, Montana had 19,000 people with Alzheimer’s, according to statistics provided by the Alzheimer’s Association of Montana. That’s expected to grow by 42 percent to 27,000 by 2025. Nationally, that number is expected to increase from 4 million to 16 million.
Alzheimer’s is the sixth-leading cause of death in Montana, and attributed to 267 deaths in 2013.
In terms of money, in 2016 there were $150 million in Medicaid costs in Montana. In 2015, it was estimated that Montana’s 49,000 caregivers had 55 million hours of unpaid care for $679 million.
“Montana faces significant public health and financial crises due to the projected prevalence of these diseases in the near future,” the action plan’s executive summary states. “Because Alzheimer’s disease and related dementias predominately affect the elderly, we can expect staggering increases in prevalence as the baby boomer generation ages. This will result in enormous impacts on families, caregivers and health and social service providers, and will cause uncontrolled increases in public health care costs.”
Alzheimer’s and dementia are degenerative brain diseases that damage nerve cells responsible for cognitive function.
Lynn Mullowney of Alzheimer’s Association of Montana.
Lynn Mullowney of Alzheimer’s Association of Montana. (Photo: File photo)
The Montana Alzheimer’s/Dementia Work Group was established in June 2014 as a response to the diseases, said Lynn Mullowney, executive director of the Alzheimer’s Association of Montana. Leadership was also provided by the Billings Clinic and Dr. Patricia Coon, who received some funding to help the group. Additional support was given by the AARP and the statewide and national Alzheimer’s Association and area agencies on aging.
The panel represented groups such as the Alzheimer’s Association, the Montana Department of Public Health and Human Services, the governor’s office, other government agencies, patient advocacy groups, caregivers assisted living/long-term care facilities, senior services groups, regional health care organizations and providers, Veterans Affairs, educators, researchers, legislators, Montana’s Native American population and the lesbian, gay, bisexual, transgender community.
It developed an action plan that includes promoting public awareness and understanding about Alzheimer’s and dementia, education to help health care providers, maintaining adequate numbers of health care workers and promoting dementia-friendly communities.
Alzheimer’s is a story Mullowney said she struggles to tell. For a lot of families, there is a stigma of shame and frustration to overcome.
She said there is a challenge to find families willing to talk publicly about Alzheimer’s.
“There is a lack of people to put a face on the disease,” Mullowney said. “That helps keep it hidden.”
She said when there is a disaster in the world, the community responds.
“But we have a real difficult time getting this story told,” Mullowney said. “It’s embarrassing. It’s highly stigmatized. It’s the very thing that defines you.”
She noted the June 28 death of University of Tennessee women’s basketball coach Pat Summitt after a five-year battle with early-onset Alzheimer’s disease will help put a face on the issue.
People with Alzheimer’s and dementia become compromised and have difficulty with simple tasks, such as remembering how to get home or how a coffee maker works.
“Our memories, relationships reflect what we are,” she said.
Dr. Roman Hendrickson, president of the Montana Medical Association and one of 20 geriatricians in the state, said Montana ranks high in terms of older population and therefore has more cases of Alzheimer’s and dementia per capita than other states.
A 2013 survey by WorldAtlas.com stated 16.5 percent of Montana’s population was 65 or over, ranking it sixth in the nation. Florida was No. 1 (19.06 percent), followed by Maine (18.24), West Virginia (17.78), Vermont (17.02) and Pennsylvania (16.69).
“We have a significant high number of elderly individuals, especially in rural areas,” Hendrickson said, adding it provides additional challenges, getting services to that area.
He said the resources to diagnose it are stretched as Montana has a shortage of primary care doctors and neurologists.
Hendrickson called it “a very resource-demanding diagnosis,” adding that when the diagnosis is made, there is a high likelihood of a hospital, nursing home or more care in the home.
He said families need to sit down and determine the legal and financial ramifications.
Mullowney said Alzheimer’s is not a natural part of aging.
“It is an illness,” she said, noting the number of Alzheimer’s cases has increased as the life span has increased.
“More people are now at risk for Alzheimer’s because age is the single-greatest risk factor,” she said.
Mullowney said families dealing with Alzheimer’s are overwhelmed by the experience of caregiving.
“They call it the 36-hour day,” she said, noting the added stress, the pressure and challenges of paying.
“They are grieving, but they do not know they are grieving,” Mullowney said. “They are losing their loved one.”
Miller was on the Alzheimer’s/Dementia Work Group. In her job she helps place caregivers in homes.
She said caregivers are struggling and need assistance in many ways such as education and extra skills training. There is a lot of burnout and turnover.
Miller said Montana providers need to improve in situations where people are being discharged from nursing homes/facilities because they have behavior changes related to their disease that facilities are unprepared to manage.
“With more robust training programs and education for caregivers and professionals, individuals at all levels of care would be more likely able to stay in the setting of their choice throughout much if not all of the disease process,” Miller stated.
She said caregivers who understand and have the skills can effectively manage their care are desperately needed.
She said volunteer respite programs need to be established to help families find the time for the much-needed breaks without more financial burdens.
Miller said more Medicaid waiver slots to help serve more people in the community are needed. And there needs to be a statewide facilitator position at the state level to oversee the coordination of services.
Hendrickson said it’s good when others can come in and give caregivers some help or a few days off to catch up on sleep.
Miller and Mullowney talk about making Montana communities “dementia friendly.”
That means training first-responders, police, firefighters, bus drivers and taxi drivers and even Transportation Security Administration workers how to deal with people with dementia.
It also means training pharmacies filling out prescriptions to drop a little note in the bag on how to deal with caregiver burnout.
Mullowney remembers an incident in California in which officers were called because a person refused to pay a barber for a haircut. Officers realized the customer had dementia and was confused as to how to pay.
For Mullowney, the action plan is a launching pad, not an end.
“It starts here,” she said. “This is the beginning. This gives us a starting point. The real work starts now.”
“It’s a murmur today and we want to turn up the volume and make it an outcry,” she said. “It’s not until we get angry about it or loud about it that something will happen.”
And maybe that will help folks like Gary and Marie.
In the mornings, Gary and Marie get up and he helps her dressed. He said they have a beautiful rock garden in the backyard of their house.
“It’s the prettiest in town,” he said. “We go back there and pick strawberries and raspberries. She helps me. I take her out there in her walker.”
The flower beds are raised and they work around the edge and pick the fruit. He said he doesn’t give in to anger or bitterness.
“We’ve had a lot of happy times,” he said.
The 11 major goals of the Montana Alzheimer’s and Dementia Action Plan are to:
- Promote public awareness and understanding about Alzheimer’s and related dementia diseases.
- Provide education, training and tools to help health care providers in making early and accurate diagnoses and to introduce interventions and community resources.
- Ensure that Montanans with Alzheimer’s disease and related dementias and their caregivers are aware of, and have access to, Montana-specific materials regarding legal and financial planning.
- Promote person-centered care, ensuring that Montanans with Alzheimer’s disease and related dementias can age in a least-restrictive setting while maintaining a high quality of life.
- Maintain adequate numbers of health care workers who are trained to meet the needs of the population experiencing Alzheimer’s disease and related dementias.
- Promote dementia-friendly communities in Montana where people and their caregivers are treated respectfully and have opportunities to actively participate in community life.
- Reduce caregiver burden and stress by promoting changes in medical, social system and employment practices that will support and empower caregivers.
- Expand the availability of high-quality, affordable home and community-based services that meet the needs of people living with Alzheimer’s and related dementias, allowing them to live in the most appropriate and least-restrictive setting.
- Ensure that residential care facilities promote wellness and maintenance of cognitive function through activities tailored to each individual, and employ staff trained in person-centered interventions and models of care.
- Provide high quality palliative and hospice care to people with Alzheimer’s disease and related dementias during end of life.
- Improve Alzheimer’s disease and related dementia data collection and research efforts in Montana
Source: Montana Alzheimer’s/Dementia Work Group, Alzheimer’s Association of Montana
Call the Alzheimer Association’s 24-hour hotline at 1-800-272-3900, go to alz.org or go to http://www.alz.org/montana/.
The Montana Alzheimer’s and dementia state plan has a website at mtalzplan.com. The panel’s plan will soon be posted at the site.
Written by Phil Drake, Great Falls Tribune,