Few conditions are as feared as Alzheimer’s disease.
The diagnosis is a guaranteed death sentence. But before that, the disease will steal your memories, your cognition and eventually your mind. Caregivers have to watch as the person they loved slowly slips away.
But there’s more to these men and women than just a disease. They have interests, passions and personality, even in the face of Alzheimer’s.
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On Monday, what is officially the longest day of the year, the Franklin United Methodist Community is hoping to shine a spotlight on the lives of Alzheimer’s patients and caregivers. The Longest Day will feature music, games, exercise events and other activities over a 12-hour period.
The public is invited to come and meet some of the patients, to help reveal the humanity of patients who too often are defined by Alzheimer’s.
“People sometimes forget that someone dealing with Alzheimer’s is still a person. They just happen to be facing that disease as a challenge,” said Jeremy Van Deman. “They’re not necessarily identified by that disease.”
The Longest Day was created by the Alzheimer’s Association to raise funds for research and services, as well as educate people about the disease. Nealy 3,000 teams are participating in the event this year, including one driven by residents at the Methodist community.
But local organizers wanted to go further to get people to identify with the disease.
“While we’re doing some fundraising, our main focus is to have people engage patients with Alzheimer’s,” Van Deman said. “We’re reaching out to our staff, residents and their family members, and the whole community, if maybe they’ve haven’t encountered Alzheimer’s in their own lives. We want to engage them with some of our residents who have the disease.”
The activities officially will be from sunrise to sunset. But the whole event kicks off Sunday night with a showing of “I’ll Be Me,” a documentary about musician Glenn Campbell’s struggle with dementia in the midst of a monumental goodbye tour.
Participants are encouraged to come and eat breakfast, lunch or dinner with the residents of the community.
People will be able to take residents who have Alzheimer’s on walks around the Methodist community facility in wheelchairs. They can take part in an exercise class with those residents, or play a board game with them.
“I’m hoping that the people who come will interact and develop new relationships, and let these people feel like real people again,” said Jan Wood, a resident of the community and one of the event’s organizers.
A mini-dance recital will help entertain both Alzheimer’s patients and other visitors to the event. A musical concert will help wrap up the day.
“We’re trying to create a situation where people who aren’t as familiar with Alzheimer’s, or are uncomfortable with it, can engage with them in a safer way, where they don’t have to feel like they don’t know how to carry on a conversation,” Van Deman said.
One of the sponsors of the event is NuStep, an exercise equipment manufacturer. The company already furnishes their machines in the community’s wellness center, so residents will have a day-long NuStep relay, with each participant putting in 10-minute shifts.
“People are signing up to ride on the machine, so it’s constantly being used from 8 a.m. to 8 p.m.,” Wood said.
All of the activities are designed to connect the general public more fully with the effects and impacts of Alzheimer’s disease.
But at the same time, the event also will be a chance for caregivers of Alzheimer’s patients to meet each other and feel like they are not alone in their situation.
“For family members and caregivers, it’s can be such a burden. They feel like they can never rest, and never take time for themselves,” Van Deman said. “We’re trying to connect those people to get together occasionally or share stories with each other, give them opportunities to support each other.”
The Longest Day
What: A full day of activities centered around better understanding Alzheimer’s disease and dementia, as well as the people who suffer from those conditions and those who care for them.
When: 6 a.m. to 10 p.m. Monday
Where: Franklin United Methodist Community
How to get involved: The event is free and open to the public.