Caring Currents

What Is Someone With Dementia Thinking?

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Parents are known to gaze into their babies' eyes and wonder, What's going on in there? Those of us who are caring for loved ones who have Alzheimer's disease or another dementia do the same thing.

I know, because I found myself wondering about my own dad's self awareness just the other day. A recent stroke left him wheelchair-bound. This is a big change for someone who was in a bowling league 'til this spring, at 87. But the stroke also seemed to worsen his dementia. He's living in a rehabilitation facility for now, and when I visit and find him lined up with other wheelchair-bound elders in the dementia unit, watching TV, I can't help thinking that he's doing exactly what he swore he never would: "sit around with a bunch of old people who don't know any better." Thing is, he doesn't seem to mind it.

As Alzheimer's, a progressive disease, worsens, it robs the ability to have conscious awareness. What does that mean for caregivers?

In early/mid stages of Alzheimer's:

  • Most people are aware of initial cognitive changes in themselves (whether they say anything about it or not).

Self awareness doesn't disappear overnight. Research has shown that many people are relieved by a diagnosis of Alzheimer's, rather than upset, because they finally have a logical explanation for something unnerving that's dogged at them.

What helps: Taking action. Take expressed concerns about memory loss or other mental-functioning changes seriously. Recommend an evaluation, given that early interventions can help slow Alzheimer's progress. With someone already diagnosed, press the importance of making decisions regarding the future handling of health and legal affairs while the person is still able to express preferences.

  • The sense of self struggles to understand the changes, at first.

Some people try to explain it away: "I guess I'm getting old" or, "I never did have a good memory for detail." Some people willfully ignore changes, to the point where they don't seem bothered by them at all. Others actively and pragmatically work around failures of memory or cognition: They write notes, cede tasks that are too difficult, work crosswords or buy computer games to stimulate their brains.

What helps: Empathy and understanding. Don't pooh-pooh such observations. Look for ways to support the person's shortcomings: More clocks, a notebook in every room for keeping track of things, multiple pairs of sunglasses or tissue packs, or whatever seems to get misplaced often.

  • Awareness of the dementia effects can come and go.

Like my dad, one day, the person may seem quite out of it, but the next be more engaged and "like his old self." Sometimes he used to catch himself, as if he realized this was the fifth retelling of an anecdote (though then he'd tell it anyway!).

What helps: Knowing these fluctuations are normal. Just because the person had clarity one moment, doesn't mean it will persist. Although the disease is progressive, it brings good days and bad days, a graph that would look more bumpy than slanted down a bit more each day.

In later stages of Alzheimer's:

  • The person is often or always oblivious to their condition.

The excuses or justifications fade away as self awareness fades. This can be a dangerous thing (as in the person who continues driving) or a blessing (as in the case of someone like my dad, who would be far more distressed about the extent of his condition if he were conscious of it)

What helps: Trust your gut. If the person seems content and uncomplaining, he or she may indeed be content, living in the moment. If the person is oblivious to the dementia but a threat to himself or others, you can't wait for clarity to kick in; you have to take action.

  • Emotional responses flatten or become misplaced "“ but remain.

I blogged recently about the amazing strength and importance of emotions in those who suffer with Alzheimer's, even for people deep into the disease process. You don't have to be aware of your limitations to be depressed or frustrated by them.

What helps: Physical contact. Touch is a messenger of reassurance and love. Offer a hug. Touch the person on the back or knee before you speak to avoid alarming them. Advanced Alzheimer's patients often find it soothing to stroke a tactile stuffed animal or hold a blanket.

  • Social skills and inhibitions fade as the social self unravels.

As a growing child learns what's socially appropriate, he shows fewer problem behaviors, like stripping off clothes on a whim or saying whatever pops into one's head. For someone who has Alzheimer's or, in particular, frontotemporal dementia, the opposite occurs. The social self unravels. A sense of what's appropriate or other sensibilities one once believed disappear, causing the person to say or do things that distress (hypersexual behavior, accusations of stealing, etc).

What helps: An ongoing social life. Even when it gets trying because of social inappropriateness, maintaining a social life (visits with relatives, conversation, the companionship of a pet) is important. Many researchers believe social connections help slow the disease process. It's not a cure, obviously, but like hugs and understanding, it never hurts.