Caring for a loved one with Alzheimer’s can be isolating and stressful. Getting help from support groups and connecting with other people who are going through the same things may be key to improving your sense of well-being.

“We’re all part of a group we never thought we'd join,” one myALZteam member wrote. “Our support of each other means the world!”

If you’ve been caring for someone with dementia, you have likely had moments of fear, confusion, and feeling overwhelmed. But you’re not alone. Read on to learn more about how support groups can help as you navigate this new world.

1. Receiving Emotional Support

One of the most important things a support group can do is to provide you with emotional support. You may not even realize some of the feelings you’re experiencing until you voice them. Many caregivers are reluctant to share what they’re feeling because they feel guilty.

“Feeling a bit guilty for not visiting mom this weekend,” one myALZteam member wrote. “I just felt emotionally spent and didn’t think I was up for the sadness that usually comes after my visits. I wish I could stop feeling so much guilt.”

“Try not to beat yourself up,” a fellow member replied. “We all need a break sometimes. We’re here for you.”

This type of support is essential for caregivers who are feeling the range of emotions that come with taking care of a loved one with dementia. Other people who are going through the same thing can understand when you’re having a bad day and are there to listen to whatever you have to say, without judgment.

2. Getting Education About the Disease

When it comes to a disease like Alzheimer’s, many caregivers learn as they go. Knowledge is power, and talking to others who have been in your shoes can help you know what to expect throughout the disease course.

Even if you’re well-educated about the clinical aspects of Alzheimer’s, such as what to expect during the different stages, you might learn more practical information from people who have cared for family members with dementia.

For instance, suppose your loved one gets agitated every day around dusk and you aren’t sure why. If you share this with your support group, a member might explain that sundowning — confusion and agitation starting later in the day — is common among those with dementia. Learning from other people who have had similar experiences to yours can help you better understand your loved one and their behaviors.

“It does make it easier to be a caregiver when we can receive information from the group,” one myALZteam member wrote. “It helps me to know there are others dealing with this disease.”

3. Discovering Practical Advice and Tips

No matter how skilled your doctor is, there’s a chance they haven’t experienced some of the very specific issues you face as a caregiver — but people in your support group may have this type of experience. They can offer tips, coping skills, and self-care strategies to help you find new ways to navigate your caregiving responsibilities.

For instance, if you’re having trouble getting your loved one to relax when they’re having angry outbursts, someone in your dementia caregiver support group may have practical advice that can help. Several myALZteam members have sought tips and strategies from others for a variety of real-world issues:

• “Going on a short vacation with family. The multiple, repeated questions about how we are getting there, when we are leaving, who is going, etc., are driving me crazy! Any tips?”
• “Any advice for loss of appetite? My 84-year-old dad lives on his own and I know he’s missing meals.”
• “I had my first panic attack. Hard to breathe. Hubby lashed out in anger and my body could not handle it. Any tips on how to handle your own breaking point?”

Talking to others about issues like these can provide you with strategies that you may be able to use when caring for yourself or helping your loved one.

4. Reducing Isolation

It can be overwhelming and isolating to care for someone with Alzheimer’s. In fact, one study found that 43 percent of caregivers felt isolated from their families while caring for a loved one with Alzheimer’s disease, and 35.5 percent said they didn’t seek help for those feelings.

Feeling isolated can impact your quality of life, physical and mental health, and sense of well-being. However, if you build a community with other caregivers, you may be able to reduce those isolating emotions. Just knowing that other people understand what you’re experiencing can reduce feelings of loneliness, whether your support group is in person or online.

One study found that caregivers who had access to community support resources experienced significantly lower rates of clinical depression compared to those who didn’t have that type of support.

5. Getting Referrals to Resources

If you’re looking for help with tasks like researching a memory care facility or an assisted living community, finding a health care professional who specializes in dementia, or evaluating in-home care providers, the options are potentially overwhelming. Asking for referrals within your support organization can help you identify targeted resources since members of the group have been in similar situations.

“I’ve learned so much from my community support group,” one myALZteam member wrote. “It’s at my local library. That’s where I heard about the fill-in nurse I use for my father when I have to go out of town. She’s been wonderful.”

How To Find an Alzheimer’s Support Group

You can find support groups that meet in person or online. You may be able to find in-person support groups from different sources, including:

• Your neurology team
• Community centers
• Social workers
• Other caregivers
• Social media posts

The Alzheimer’s Association offers a directory to help you find support groups by location.

Before you attend an in-person meeting, you may want to talk to someone in the group to find out what happens at the meetings to see if you’ll feel comfortable. Additional information you may want to ask about a support group includes:

• Who is this group for?
• What are the meetings like?
• What is the main purpose of the meeting?

If you don’t feel comfortable at an in-person support group meeting or you can’t leave your loved one home alone to attend one, online support groups like myALZteam are a great resource. These organizations have various formats, such as message boards, social media, and even web-call meetups. Whichever format and meeting cadence is most convenient for you is the one you should consider joining.

Talk With Others Who Understand

On myALZteam — the social network for people with Alzheimer’s disease and dementia caregivers — more than 85,000 members come together to ask questions, give advice, and share experiences.

Have you found any benefits from joining an Alzheimer’s caregiver support group? Post your thoughts in the comments below, or start a conversation on your Activities feed.