“I have Alzheimer’s, and every now and then I’ll be telling my daughter something and I know what I want to say, I just can’t say it,” said Richard St. Jean of Coventry. “It takes a little bit, and then I’ll say it afterwards.”
Instead of getting frustrated, he just smiles. Having a good outlook, he said, is important.
“If I don’t, I’ll get too burned up,” said St. Jean. “I’m on medication and I’m feeling a lot better. I’m starting to read again and do different things, which is really good. I ski all week long. If I don’t think positive, I’ll get nervous.”
St. Jean was diagnosed with Alzheimer’s disease two years ago. Alzheimer’s disease is a form of dementia that gets worse with time, and affects memory, thinking and behavior. Dementia is a loss of brain function that occurs with certain diseases.
The Alzheimer’s Foundation of America reported in 2011 that the disease affects 5.1 million Americans, and is the sixth leading cause of death in the United States. While it primarily impacts people 65 and older, a rare form occurs in people as young as 30.
To give caregivers, health care providers, family members and anyone impacted by the disease an opportunity to tell their stories and provide vital input to a comprehensive state plan for Alzheimer's Disease and related disorders, Lt. Gov. Elizabeth Roberts, along with Catherine Terry Taylor, the director of the Division of Elderly Affairs for the Rhode Island Department of Human Services, has scheduled six free “Listening Sessions” throughout the state.
One was held Friday afternoon at the Kent County YMCA. More than 25 people, including St. Jean, were in attendance.
Roberts and Taylor began the session by sharing their personal stories. Roberts cared for her ailing mother-in-law who was diagnosed with Alzheimer’s years ago. These days, her stepfather, who is 96, is dealing with dementia.
Taylor discussed early childhood memories of visiting her grandfather in a nursing home, who had vascular dementia, a form of Alzheimer’s caused by conditions that block or reduce blood flow to the brain, depriving brain cells of vital oxygen and nutrients. Now, her child has Down syndrome, a genetic condition in which an individual has 47 chromosomes instead of 46. People with Down syndrome have 100 percent chance of developing Alzheimer’s as they age.
“I have a very vested interest in this,” Taylor said. “Part of the issue with Alzheimer’s is that none of us tell our stories. We’re just so isolated in care-giving that we don’t get a chance, so this is your chance to tell us your experience and inform us.”
“Our experiences are unique to us, but there are common things we learn,” she said. “We know that the bulk of the care rests with the family. Our challenge and opportunity is to help people.”
Their plan is to develop a statewide inventory of what resources are available, what works well, and what the gaps are.
Some of those gaps include issues for early onset cases, as people younger than 65 don’t qualify for Social Security and health benefits. Taylor said one-sixth of all cases are early onset.
“It’s not insignificant,” she said.
Other gaps include transportation to daycare services, misdiagnosis, a lack of research and research funding, a lack of universal education about the topic for health care providers and students in the field, lack of respite care and coping with the general stress it causes.
While many people shared their experiences, most wished to remain nameless out of respect for the privacy of their families.
One Warwick woman is a caregiver for her 88-year-old mother and her 62-year-old brother, a Vietnam veteran, who both have Alzheimer’s. She has two areas she finds frustrating, the first being that her brother had been a state employee and was short by a small margin to qualify for early retirement. He submitted an application that is yet to be reviewed by the Department of Treasury.
“They told me it is normal to have a six-month waiting period,” she said. “What this will do is guarantee him health insurance at a reasonable rate. Getting him in to be reviewed by a doctor is a very lengthy process.”
Another area of concern is transportation. He lives in West Warwick and is transported by RIde to a daycare facility in Cranston at a cost of $8 per day. But there are days he waits to be dropped off for at least two hours.
Taylor advised her to speak to RIde about the issue. Also, Taylor said there is hope, as the state has gone out to bid for transportation brokers, who will be working with RIde to correct these types of problems.
For Judy Spremulli of Cranston, her sister and mother were diagnosed with Alzheimer’s around the same time, and they recently passed away within seven weeks of one another.
“I’ve seen every aspect of this – home care and facility care, differences in coverage – one had good coverage, one not so much,” she said. “And I’ve seen the diagnosis piece.”
She explained that her sister went to a psychiatrist and was misdiagnosed with bi-polar disease without being vetted for physical problems or any kind of testing. Doctors started her on medication, which led to all kinds of additional problems.
“We need some consistency in the way this is diagnosed,” Spremulli said. “We need more mental health and physical health coordination. We need more research and more research funding. I’d like to see a centralized clinic for dementia care. Wouldn’t it be great if we could get training for health care workers that was consistent with this disease?”
She also doesn’t think there is enough awareness for the disease.
“There are pink ribbons on my eggs – can we get purple ribbons on milk cartons?” she said, as the color associated with Alzheimer’s awareness is purple.
Taylor offered comfort, noting that during five days in October the State House was lit purple to promote Alzheimer’s. Additionally, she said President Obama has a “robust commitment” to funding research for the disease.
Stephanie Culhane, a case manager for Westbay Community Action and a member of the Cranston School Committee, has a lot of experience with the disease.
Culhane volunteered at the Cranston Senior Center as a teenager, worked in assisted living and nursing homes, and was a caregiver for her father, who had vascular dementia, as well as her mother-in-law, who had Lewy Body dementia, which is closely associated with Alzheimer's and Parkinson's disease. She agreed that having a centralized form of training for ER doctors, nurses and CNAs is vital.
“If we had a program where everyone is trained in the same or similar ways, we could have more consistency,” she said, noting that there are many resources for people available at West Bay Community Action. Learn more about West Bay Community Action at westbaycap.org or by calling 732-4666. “We need more education out in the fields to understand these diseases.”
A young woman studying social work pointed out that classes involving the aging, elderly and their diseases aren’t available at her college.
Like Culhane, Annie Murphy of the Alzheimer’s Association said resources are available. Murphy, the coordinator of Live & Learn, a social program for people in the early stages of the disease, said the Association offers 24-hour support and resources. To find out more, visit alz.org/ri/ or call the help line at 1-800-272-3900.
“Our goal is to help people in the state understand what their resources are,” she said. “We are available for families. We continue to fundraise so we can tunnel that money into research dollars. We are also trying to help families understand what clinical trials are. One of the reasons our clinical trials are folding is because we don’t have enough participants.”
Speaking of resources, a local man said he’s having difficulty making a living, as he had to quit his job to care for his ailing parents. Sadly, his father recently died, but he is still caring for his mother, who has multiple sclerosis.”
The man is on COBRA, but doesn’t have much left. He is responsible for maintaining his home, as well as his mother’s home.
“I have no regrets – they are my parents,” he said. “But I just don’t know what to do.”
To help, Roberts mentioned a program, Right at Home, which offers in-home care and assistance. However, the receiving caregiver can’t be legally responsible for the person who needs care, that is, a child or other relative may qualify, but a spouse cannot. More about Right at Home can be found at rightathome.net.
Spremulli felt his pain.
“My needs were on hold,” Spremulli said. “I had family support. I was lucky.” She said online blogs written by people in similar situations also made her feel better. “The personal stories helped me. I advocate and that helps.”
Roberts feels the same. She said finding online resources is a great way to cope.
“Google is a wonderful thing,” Roberts said.
Another woman suggested creating a respite group made up of doctors, nurses, social workers and volunteers to assist and direct people accordingly.
“The average person cannot afford daily daycare, transportation or assisted living,” she said. “We need to help these people.”
In the meantime, Roberts and Taylor said they will remain committed to the cause. Their report is due to the General Assembly by July 1, 2013.
“July 1 is not the last day of work – as long as we are breathing and active, we’ll be chipping away at this,” Taylor said, with Roberts adding, “If there’s legislation, it will be the following year.”
While three sessions have already been held in Warwick, Portsmouth and Providence, three more will be held during the next week or so. They are as follows: tomorrow from 12 to 1:30 p.m. at the Woonsocket Public Library at 303 Clinton Street in Woonsocket; Thursday from 6 to 7:30 p.m. at the Bayside YMCA at 70 West Street in Barrington; and Dec. 18 from 12:30 to 2 p.m. at the Peace Dale Library at 1057 Kingstown Road in South Kingstown.
For more information, email firstname.lastname@example.org (write Alzheimer's in the subject line) or visit www.ltgov.state.ri.us/alz.