Being the primary caregiver for a loved one is never easy, but a patient's diagnosis of dementia or Alzheimer's can present additional challenges of dealing with changes in behavior and mental capacity.
That is why Newton Medical Center's Avery Vogts, LMSW, and Greg Peterson, LMSW, decided to facilitate a support group for individuals who are aiding people with dementia or Alzheimer's.
"The onset of some of these diseases can be very gradual or can, potentially, be almost overnight, depending on the situation and so you have families who are thrown into a very stressful situation," Peterson said. "You don't know what to do when your loved one is completely changed."
Symptoms of the dementia or Alzheimer's often include combativeness, irritation, agitation, confusion, anxiety and depression — which can be hard to understand and accept.
"You're seeing your loved one change over time and those changes aren't necessarily positive ones," Peterson said.
"We have medicines that can help with those symptoms, but their brain is continually going to get worse," Vogts said. "They're going to continuously change and it doesn't get better."
The support group meetings give Vogts and Peterson a time to share avenues to find articles and training about caring for Alzheimer's and dementia patients.
"There are a lot of resources out there for people with Alzheimer's and dementia, but you're not aware of that until someone tells you about it," Peterson said.
"We are there for references, resources, emotional support and we always give our phone number in case (caregivers) need support outside of the meeting," Vogts said.
Vogts and Peterson do not give medical advice, but urge caregivers to check in regularly with the patient's physician. In situations where lifestyle changes are recommended for the patient, an educated assessment from a neutral third party is more likely to be accepted.
"Essentially, people with Alzheimer's and dementia are losing control," Vogts said. "...Dementia is something that we can't improve. We don't have the medications or technology to improve it, so it doesn't get better, it gets worse."
According to the World Health Organization, 50 million people around the world have dementia, and nearly 10 million new cases are reported each year. Despite that trend, not many people are trained in how to respond to those with dementia or Alzheimer's.
"I think caregivers can feel like they're being judged for not doing the correct thing because they're not sure what to do," Vogts said. "It's heartbreaking, hearing some of the stories. It's emotional. You've lost that person. They're still there, but you've lost them. It's very hard."
The support group has drawn in a mix of people who are caring for individuals in both the earlier and later stages of dementia.
"You don't know what to look for, you don't know what steps are next, you don't know what's coming next and so having other people who are going through the same experience is very comforting," Vogts said.
Over the past six months, the support group has met to provide caregivers with coffee, cookies and a time to share their stories in confidence.
"Caregiving is a very stressful, isolating experience," Vogts said. "There is a lot of pain and change that goes along with that."
"(People) want to come and talk about their frustrations and the difficulties that they're having with their loved one," Peterson said.
Getting other family members to accept the reality of a diagnosis of Alzheimer's or dementia can also cause stress for a caregiver.
"Sometimes, extended family members aren't as understanding as they can be; they think mom or dad is fine," Peterson said.
"Having that outlet where you can come for an hour and meet with others who are going through the same thing can be very supportive," Vogts said.
At the support group, attendees are encouraged to connect with each other outside of scheduled meetings.
"It's a really great resource for our community," Vogts said.
Usually held the last Thursday of each month, the support group will meet from 6:30 to 7:30 p.m. Dec. 20 in the South Conference Room at Newton Medical Center, 600 Medical Center Drive. Anyone is welcome to attend.
"It's a safe, open space to share their thoughts, feelings and experiences," Vogts said. "...If you're not ready yet, you don't have to share. You can listen."
For more information about Newton Medical Center's support group for caregivers of those with dementia or Alzheimer's, call 316-804-6117.