How to Include People With Dementia in Family Celebrations

Well, not exactly.

Gerontologist and dementia expert Juliet Holt Klinger says while it’s wonderful to go out of your way to include a grandparent with a dementia diagnosis in the lives of your kids, it’s important to go about it in an intelligent way.

“As admirable as it is to make sure your loved one with dementia remains included in family life, you need to remember one thing first and foremost: It’s not about you,” Juliet says. “People with dementia, including Alzheimer’s, experience the world differently, and things you or your kids might find exciting, they could find overwhelming.”

The goal, then, should be less about ensuring the grandchildren get the experience they want and more about creating a dementia-friendly family experience — one that balances interaction with respect for the elder’s changing needs. Juliet says, “As was once suggested by Dr. G. Allen Power, a geriatrician and author on dementia issues, just as we have built ramps to accommodate wheelchairs, we need to consider how we can build “cognitive ramps” for people living with dementia.”

So, what does this look like in practice?

For starters, nix the marching bands, fireworks and giant inflatables. What’s fun for the children could be bothersome or upsetting to a person with dementia. Experts at John Hopkins note that people with dementia can be extremely sensitive to their environment, and when they are overstimulated, whether via noise, light or activity, increased confusion or agitation may result.

Additionally, location and time of day can make a difference. “If you’re planning a family event to celebrate with Grandma, I would suggest a few things to increase the likelihood that it’s an enjoyable experience for everyone. First, consider visiting Grandma in her community rather than bringing her to you. Allowing her to stay in a place that’s familiar and comfortable can go a long way toward reducing agitation. Secondly, as you’re planning your visit, consider visiting earlier in the day. Generally people living with dementia have more stamina and access to coping skills earlier in the day,” Juliet says.

“You should also consider visiting in small groups for short periods of time,” Juliet adds. “Smaller, more intimate visits can be less overwhelming for everyone. And, when you leave the young ones with a sitter for your initial visit, you will be better able to gauge whether or not your loved one is up for the energy and activity toddlers add to the equation.”

Having young children participate in visiting grandparents with dementia as they are able can be a wonderful experience for both grandparents and grandchildren. A dementia diagnosis shouldn’t stand in the way of building or reinforcing these vital familial relationships. However, before you bring a 3-year-old on your visit, consider your audience. “The good news is that if your grandparent loved kids before a dementia diagnosis,” says Juliet, “they will likely still love being around the little ones! However, if they preferred the quiet company of a cat or dog to children, that preference is probably still there too.”

Younger children who have no memory of their grandparents before their dementia diagnosis may not require much explanation of the situation—to them, the symptoms of dementia may not even be noticeable. For older children who have an existing relationship with a grandparent, seeing a grandparent as dementia progresses could require a conversation beforehand. “Children tend to be remarkably adaptive and accepting once they grasp what is happening,” Juliet says. “Take some time beforehand to talk through their favorite memories of their grandparents, and prepare them for a somewhat different experience on this visit. Be encouraging and positive.”

“If you are concerned about your visit or you don’t know what to tell your children about dementia, there are several wonderful resources available to help families with this conversation. The Alzheimer’s Association has dedicated web resources for the families of people with dementia, including Alzheimer’s, and Maria Shriver has written a great book called What’s Happening to Grandpa? that uses a fictional account of a young girl learning about the disease following her grandfather’s dementia diagnosis.”

Finally, Juliet says, “The best thing everyone in the family can do to ensure a good visit is to adjust expectations and meet the person with dementia on their own terms. Focus on the things he or she liked to do, and do it in a setting that’s calming and comfortable for them. Even if it’s not the extravaganza you initially planned, if everyone has a pleasant time, who cares?”