Caregivers of dementia patients can also easily be called “managers.” Believe me, there are always countless matters that need urgent management. But even with all the doom and gloom, I have found a bright spot! I have met and befriended several people, diagnosed for many years with different types of dementia, who are doing extremely well. Are they suffering from cognitive impairment and other multiple symptoms? Yes, but they manage it very well. Through getting to know these folks I have found a common thread that connects them. It is that they are strong advocates for dementia awareness, actively working to spread not only consciousness but also the common sense ways to handle this mind robbing disease.
Now, let me clarify this; I don’t believe that it’s simply their activism in this worthy cause that helps them to handle their symptoms better than most, I’m convinced that it’s the socializing that benefits them. Unlike most dementia patients they get out of their homes and practice public speaking. While educating others about what it’s really like to have dementia by running support groups and not living in a shell, they are, themselves, profiting.
I’ve learned from experience that it’s crucial to have loved ones with dementia maintain a run-of-the-mill lifestyle. This serves to keep their anxiety and confusion at bay. However, maybe we could find a happy medium with which to keep them socially active and maintain somewhat of a routine. Just because they have dementia doesn’t mean they still can’t lead a life of quality.
A good friend told me that when he was first diagnosed with dementia he thought his life was over. Conversely, after he realized it was more of moving into a new phase of life, he persuaded himself to learn how to adapt to his new symptoms. That was nine years ago. He’s still teaching others about dementia nearly every day. Does he have bad days and horrible moments? Of course, but he has learned to pace himself.
Sadly, it is way too common for these folks and their caregivers to start noticing their social network of friends beginning to disappear, one by one. While caring for my dad, within a year my phone virtually stopped ringing. It is essential to put forth an effort to sustain a social world. It may not be a familiar one as now it will likely include people who are sharing the same dilemmas.
It’s important to realize this: I’m not suggesting trying to change the lives of patients when they’re already in the latter stages of the disease. Instead, they need to remain social from the early stages and as far into the disease as possible. Just the fact that they know they still have friends and outside support may be the best medicine they can find.
This is the concept of the Memory Cafés that are popping up all across the country. These groups are designed for those with dementia to have an hour or so of a social gathering with others who are in the same boat. Whether the word, “disease” does or doesn’t pop up during these meetings is fine.
The need for social contact is part of the human condition, whether we have dementia or not.
