In order for me to gain some firsthand experience of what it is like to live in an institutional dementia care setting, I arranged with the administration of a nursing home in the area for me to be admitted as a “resident” without the care staff knowing that I did not have dementia. We arranged that I would come in as someone who had mild dementia and needed a place to stay for a few days while my sister (with whom I lived) was out of town.
The admission process
Most of the questions during admission were posed to my sister, but only after the social worker asked permission of me to do that, to which I said yes, because I wanted to present myself as confused and withdrawn. During this process I was somewhat anxious about how I was presenting myself, since it was my first encounter with staff. (I did find it easy to act withdrawn and deferential.) Consequently, I do not actually remember very much about the questions and the initial process. I do remember the social worker saying they wanted me to feel at home here and that I could get snacks anytime I wanted to. The “drop your drawers” skin check was something I was somewhat ready for, since I had been told earlier by one of the administrative staff what the skin check would involve. I was relieved to have to show only my derriere. The nurse said she was not interested in seeing my “private parts”.
Lack of exercise and meaningful things to be involved in
This was a big issue for me. I was extremely grateful for the 10 minute walk outside each day, but I am used to much more exercise than that. (I discovered that one of the windows was unlocked in my ground floor room, and there were many times that I was tempted to take off the screen and go for a walk on my own!) For activities, the only two games in town seemed to be bingo or a card game, neither of which appealed to me in the least. Of course, I was not really bored since I had access to scrabble on my computer, and later in my stay, the internet. I also spent a lot of time simply observing and, when appropriate, interacting with some of the residents. But had I been in there for real, I would have been stir-crazy pretty quickly!
The lack of meaningful things for residents to do throughout the day is, I think, one of the biggest detriments to the well-being of persons living with dementia in a facility. While I was impressed with the relative lack of anxiety among the residents, I did notice the hours spent sitting in wheelchairs, or if ambulatory, in walking the hallways with nowhere to go. And in the evening, there are repeated conversations among some resident about where to go, where to sleep, or how to leave this place.
Directly tied to this sense of inactivity and displacement is the issue of “learned helplessness.”
Rarely did I see residents being encouraged to participate in normal activities of daily living. There seems to be a default mindset that persons living with dementia are incapable of this kind of participation. Even though I was fairly capable of doing things for myself, I was never asked to help with any of the communal activities like cooking, setting the table, clearing the table, washing the dishes—things I could have readily done. There were three notable exceptions to this general mindset. I was once asked by the activities director to help with bingo, by calling the numbers. Unfortunately, because I cannot abide bingo, I politely but firmly refused. The second was when I observed a nurse ask one of the male residents to watch the medicine cart for her while she tended to something else. He did so, with his whole being, standing guard! The third was when a younger female resident literally begged an assistant to give her something to do. The assistant brought her a stack of cloth table napkins to fold which she and another resident happily did.
Far from feeling like I was in a place with freedom of movement and connection to the outside world, I felt restricted, and mostly cut off from the normalcy of the outside world. I could, however, make phone calls. Cell phones were not allowed for the residents, but I could, at any time use the phones on the unit and was told how to place an outside call. Also, fortunately for me, after a couple of days, with the help of the administrative staff, I was given one of the facility’s laptops with internet connection.
Wearing a mandatory alarm bracelet added to the feeling of being restricted. I was told that it was for my safety, but I knew that it meant I could not leave the confines of the unit. I wondered what the reaction would be if I tried to leave the unit, but not wanting to cause a disturbance, I did not try it. Some of the staff seemed concerned that I might be bored. One of them asked if I would like to go with her on a tour of the rest of the nursing home, which I did. I was also told there was a pool table outside of the unit, but that a staff person would have to go with me. I asked about this again at some point, but no one offered to go with me.
The meals were ok, though it would be good to have many more food options for vegetarians. One of the assistants was kind enough to bring me to the main dining room so I could choose some of my own food (the last two days I was there). She also asked the server about veggie burgers. They did not have any, but I was grateful for the attempt. The food in the main nursing home seemed better than that served in the dementia unit, probably because of the number of choices I had. Since nuts are something I eat often, I had brought my own supply, and this helped me get by. If not for that, I would have been hungrier. The snacks that I had access to were, for the most part, nutritionally deficient, and often filled with the empty calories of high fructose corn syrup. (The exceptions to this were the bananas and oranges, but otherwise not much choice of simply fruit or nuts.)
Feelings of my wife and sister
Although my wife fully supported the idea of my temporary stay, she was surprised at the feelings it triggered in her while I was gone. She said, “Though in my mind I knew why you were doing this, I felt like I had lost you.” I should add here that my wife has a strong aversion—like many people—to nursing homes. She also had a very traumatic experience with placing her mother in a long term care facility a few years ago. At a deep emotive level she experienced my being in the unit as a complete separation. My sister, who agreed to be part of the admission process, also reported back to me later that she experienced a strong sense of discomfort and guilt when she left me in the unit after the admission process–in spite of knowing that I was doing this of my own free will.
These strong emotive reactions highlight the deep-learned societal fear we carry around in regard to being “placed” in the “confines” of a long term care facility. It should lead us all to ask, “How can we accommodate persons who need assistance without depriving them of personal freedom and choice? How do we create a supportive environment that both honors personal choices and builds on the remaining abilities of persons living with dementia?”
Leslie Fuller says
Wow. I wanted to read more of your experience. I am a trainer/consultant in dementia care, and I may make this required reading in my training sessions. What you have described here is the traditional ‘kind institutionalism’. I’m sure the staff were kind and compassionate, but there is so much more in life that we need. Folding towels? Why is that a standard for having someone feel useful? I would love to challenge a community (I hate the word unit – again very institutional) to run their activities programs with no bingo, napkin folding, coloring or balloon volleyball. What would they do without these? Not to say that some people may get pleasure out of any of those activities, but programming should be designed based on the desires and interests of those living there. Thank you so much for this article.
Judith Konopaski says
As a former volunteer ombudsman in Washington, I was very interested in your article. Your voluntary stay is something that I have always wanted to experience; either in a dementia unit or a continuing care unit. I was not surprised by any of the observations that you made. The question is: what can one do to improve upon this experience in existing facilities? I currently live in a continuing care community that includes AL and Nursing home facilities.
Jim Vandenbosch says
I think it starts by removing the assumption that persons living with dementia are totally disabled and have lost their ability to make choices. From there, it’s a matter of hiring and empowering care partners who know how to work with individual residents, providing the assistance for them to live a life that’s meaningful for them.