There are two tangible approaches to helping individuals with dementia that are significant to improving their quality of life. One is creating “dementia friendly communities,” which is often assisted by applying a dementia-friendly communities toolkit or checklist to assess one’s own community. One of the major components of such a toolkit is the physical design of communities, most of which are covered by designing “age-friendly communities.” Designing age-friendly communities was described in a recent Grey Matters column by Lillian Nakamura Maguire. But “age friendly communities” design does not capture everything needed in a community to be dementia-friendly. This also includes the training of those likely to interact with people who have dementia. For example, a first responder can watch a video explaining how to recognize someone living with dementia in a crisis situation and learn appropriate interaction techniques.

One other significant factor is continuing community engagement. Whether the individual with dementia continues to interact with society and be engaged with people and projects, or whether they slip into isolation due to the dementia can make a huge difference.

Maintaining the connection with the world is essential to battling the effects of dementia

Maintaining the connection with the world is essential to battling the effects of dementia. Dr. Andrew Kaegi had a rare opportunity by being involved in the national conference. While doing brain exercises is important, Kaegi was advised by Dr. Michael Passmore, who originally diagnosed his dementia:

“You’re going to get a lot more out of the advocacy and community engagement you and Susan are doing than sitting around playing Sudoku. Doing things with others is very important. Isolation is a huge problem.”

The journey that Kaegi and Rae have taken through investigation, advocacy and responding to Kaegi’s dementia in as positive a way as possible has been difficult and exhausting, but necessary to pursue their best possible life course. Kaegi and Rae described that initial confrontation of the possibility of his having dementia:

“Susan scheduled a meeting to talk about my problem.” Kaegi started.

“Sometimes he just had that certain look, like he was just not getting it,” Rae continued. “I told him I noticed that he was having trouble describing things, thinking things through and struggling for words. He would call it a timekeeper rather than a clock. He was having trouble processing questions or information, assessing space.”

“When Susan told me what she saw happening to me I was angry. I told her that her memory wasn’t that good either and that she was exaggerating.”

Kaegi was not happy about it, but a few days later he came out and said, “yes, you are right. I think I am having problems.” 

“She scheduled an appointment with our family doctor, where I was given a series of memory tests. I actually did quite well, but the doctor saw enough from the appointment that I was referred to a geriatric psychiatrist, Dr. Michael Passmore.” 

“When it was confirmed by Dr. Passmore that Andrew had dementia, I cried and cried.” Rae said. “Knowing the path that we were going to be on. This had confirmed my worst fears.”

Kaegi’s reaction to the diagnosis seems to reflect his attitude about life, at least since this author has known him.

“Wow. This man [Dr. Passmore] knows what he’s talking about. I’m very privileged that I have this doctor to work with.”

“I thought; Well, we will just have to go through this. In fact, I was very relieved that I had this opportunity. I knew what was going on.”

Rae explained the different reaction many people with dementia have. 

“Some people who have dementia symptoms are scared or ashamed to tell their doctor; reluctant to admit to themselves that they have dementia and scared or ashamed to be open with their family and friends about the diagnosis. The result of ‘hiding it’ is social isolation, such as withdrawing from social connections and activities within social settings, which then results in decreased brain activity and the dementia worsening.”

After Kaegi and Rae did extensive research into dementia, including talking to experts in the field, they were determined that hiding it was not how they were going to tackle his dementia.

“I actually tell people what it feels like. The vast majority of social interactions where my dementia comes up have been positive. People treat me with respect.”

One exception noted by Rae was that sometimes when people talk to the two of them together, they direct whatever they are saying toward her. Rae feels that there is a stigma around dementia like there was around cancer, diabetes or heart disease 50 to 60 years ago. According to Dr. Passmore, dealing with dementia in an open and honest manner and setting aside the stigma will improve the quality of life for both people with dementia and those caregivers involved. Rae gave an example of what this approach has meant to them.

“Being involved, going out and doing stuff, having a cause is all very important. When Andrew goes out for coffee with friends, I can see the difference in him for 24 hours because he is much more alert and he remembers things. He is excited about life.”

In response to the question, if you could say one thing to the average citizen, what would it be, Kaegi thought. 

“I want to talk about how it feels to have dementia. I have some good days and some very bad days. I got up this morning and I was thinking about us getting together to talk about this and I couldn’t find the right words to describe it. It made me feel angry and sad. I often feel muddled.”

“Dementia doesn’t necessarily mean the end of quality life,” Rae said. “You can still live with purpose and joy. And for the caregiver, make sure you get respite and continue your activities and relationships. You are going to need them.”

Dementia and getting past the stigma, Part 1