The biggest change in people’s attitudes is an increase in apathy. People with dementia gradually become less responsive, harder to talk to, emotionally flat. They lose interest in their jobs, their family and friends, their homes, even themselves.
Perhaps some of the problems of memory loss and difficulty concentrating are caused by apathy. Lisa said her husband, Glen, lost his «sparkle» and became less affectionate, gave short answers to questions, and couldn’t get interested in a conversation.
She described a typical conversation: «I’d say, ‘What are you thinking about?’ He’d say, ‘Nothing.’ I’d say, ‘What did you do today?’ He’d say, ‘Rested, watched TV, read the newspaper, that’s about it.’ I’d say, ‘Anything interesting on the TV or in the paper?’ He’d say, ‘I can’t say so.’ I’d say, ‘Are you hungry?’ ‘No.’ ‘Are you thirsty?’ ‘Hard to say.’» Lisa’s daughter agreed:
«Dad was always happy to see me, but he’d lose interest. He was real dull, not enthusiastic about anything. He just seemed to go through the motions. When I’d call him on the phone, we’d talk a minute and he’d just hang up. We used to talk for a while. If I didn’t call him, we wouldn’t talk for a week.»
Caregivers routinely report that people with dementia seem content just to sit and stare. When people are in the later stages of dementia, their apathy becomes even more distressing for the caregiver. People with dementia gradually become disconnected from the world, stop laughing or empathizing or showing affection, and finally become so disconnected that they will not speak.
Even though apathetic people seem depressed and unhappy, they say they are not. They are satisfied with their quietness. They are not sad, not frightened, not lonely, only disconnected.In the early stages of AIDS dementia complex, people who are apathetic can often be drawn out.
Mental health professionals say they do not know whether being drawn out decreases apathy or just makes the situation less distressing for the caregiver. In any case, they say, it can’t hurt. Lisa found that trying to draw her husband out often helped:
«I’d try to talk to Glen about recent events, or someone I saw that day, or what happened around the neighbourhood. That often got him talking. When he became less affectionate with the grandchildren, I’d remind him of the good times we’d had with them, and then bring them over, one at a time, and that seemed to work.
When he got less affectionate with me, I began sitting on the arm of his chair and snuggling against him, and he seemed to like that. Or I’d talk about our memories, like when we were dating or got married, and that got him talking too. But sometimes I just let him be disengaged.
I think he needed some of it.» Dean says he doesn’t socialize well any more and that other people do more of the talking, though he enjoys listening to the talk. «But I can’t handle strange social situations,» he says, «no company picnics, no big parties.» Because people with dementia are both apathetic and have difficulty concentrating, they need help making decisions.
They can’t pay attention for long, they become confused, and they don’t care much about the outcomes; as a result, they make decisions slowly or not at all. Lisa’s husband needed several days to make a decision.
«If a friend called and asked us to eat dinner that night,» she said, «he couldn’t answer because he couldn’t make a decision that fast. In those cases, I made the decisions. When the decision was important or when we had two or three days to make it, then he could make up his mind.»
When the decision is important—like deciding when to apply for disability insurance or how to provide for children—the person with dementia has difficulty both making the decision and acting on it. Caregivers need to present the options one by one, slowly, discussing each one, the way Lisa did with the decision to lend the lawnmower.
They should repeat the options until the person with dementia understands, even if that takes days or weeks: «Should the child live with your mother? Your sister? Should the child be adopted?»
Once the person has made the decision, caregivers need to write down the list of things to do, the steps to take, one simple step at a time. If the person seems to have trouble carrying out the decision, the caregiver should remind him: «We talked about this and I know you want it done.
Shall I call the lawyer for you? Shall we do it together tomorrow? Shall I come over at ten?» Decisions may need to be repeated, gently and sympathetically, for days.*147\191\2*