How can we keep my father-in-law from being so lethargic?

A fellow caregiver asked...

My father-in-law, who is in the later-middle stage of dementia, is mostly content when he is watching DVDs. He has a large collection (about 300 movies) and usually spends 12 or more hours a day sitting on the couch watching them. My husband and I enrolled him in an adult day program, trying to provide some kind of social interaction for him while we work during the day (he has his own apartment in our two-flat). We made him go to the "senior club" twice a week for three weeks, but he HATED it. He would be very agitated when I picked him up, telling me he didn't want to go there anymore and even shouting and cursing at me about it. This agitated mood seemed to carry over into the evenings as well, with my FIL being generally argumentative and upset. On a couple of occasions he brought up "the club" to my husband hours later, adamantly insisting that he would not go there anymore. The staff at the center told us that he participated in some activities but spent a lot of time wanting to leave and becoming angry when told he could not. They suggested we ask his doctor for a mild dose of an anti-anxiety med, take some time off from the center, and try again in a few weeks. So he's been taking 25 mg of Seroquel twice a day for about six weeks; he's calmer these days, but has no interest in doing anything besides watching movies. I work at home, so I make sure he eats during the day, and the three of us have dinner together every night. As soon as we finish eating, he says "I'm going back to my house to watch movies," and it's difficult to get him to do anything else. He's played the accordion since he was a boy, but lately he doesn't even want to do that (although he is still quite capable and enjoys it when he does play). He doesn't talk much (aphasia is a primary symptom), so it's really hard to engage him in any conversation or activity. Watching his father's decline is very heartbreaking for my husband, and he (understandably) gets frustrated when his efforts to get his dad to participate fail. I feel like we're not doing enough to keep him active and engaged, but my husband is reluctant to try day care again. Honestly, I'm not sure that's the answer either, but I feel like if he's not going to day care, we need to find another way to regularly get him involved in something besides watching movies. Is it even realistic to think that we can achieve this goal? Or should I just accept that apathy is part of the disease and let my FIL sit in front of the TV all day? I'm really struggling with this aspect of caregiving, and I would appreciate any advice.

Expert Answer

Merrily Orsini, MSSW, was a pioneer in the business of providing geriatric care managed in-home care. She currently serves on the board of the National Association for Home Care and Hospice and is Chair of the Private Duty Homecare Association. She holds a master's degree in social work and is a nationally known writer and speaker on aging, elder issues, and in-home care.

You mention that your father-in-law is most content when watching movies. The key to caring for someone with Alzheimer's is to keep them content and avoid confrontation. Two things that bother me about his movie hobby are the sitting in one place for a long time, and the potential safety issue of his being alone without any supervision. You said you make certain that he gets food. Also he does need hydration and some exercise during his day. I always say it is better to alter the environment and work with the Alzheimer's patient rather than working against him. And I find medicating him to get him to do something that he does not want to do less than desirable. It seems healthier for him to just allow him to do what he wants and not provoke him so he becomes agitated. I would say that "active and engaged" is not what he wants at this stage of his disease. Instead I would look for some safety device, perhaps one of the new monitoring devices so you know that he is safe. These two are work looking into: and It would do you and your husband good to find and attend a support group and to read that Mace and Robbins book The 36 Hour Day to better understand the disease. If your FIL had cancer you would not want him to do things that he could not do. Think of this as similar and try and get your husband to understand that Alzheimer's is a progressive degenerative disease of the mind, and things that may seem better in a logical sense may not be what is in his father's best interest.