BEVERLY SAID, “SHE DIDN’T CARE ABOUT ME!”
BEVERLY SAID, “SHE DIDN’T CSRE ABOUT ME!””
How does anyone other than close family/friends in first contact create an engaging conversation/interaction with a person with dementia (mid-stage or late stage) and thus develop a positive relationship? This issue struck me in a meaningful way when, several years ago, we hired women from a company to spend time with Beverly—relief for me and something new for her. This did not work well for multiple reasons, in part because there did not seem to be a person who came repeatedly. More broadly, there was the critical problem of how to engage her as a person. And this was clearly in the early-middle stage of the disease, when she still continued to have remarkable social skills and social intuition. Several times, right after one of these hired women left, she simply said, “She doesn’t care about me.” The women, of course, tried to care; they asked questions, talked about her taste in music and her children and family. But that was not enough. We can all be trained to engage someone by asking about their central interests, but that can seem fake, certainly to most of us, including people with dementia who are still socially savvy. And, despite her loving, positive, happy attitude toward others, Beverly continued to not do well with most of them; I think it was because the women really did not care.
I have thought about what would work for the person with dementia to perceive a stranger as beginning to be a friend. The starting point was, as discussed above, the hired caregiver, or the staff in a facility such as where she is now. But the matter spreads to anyone who visits her, anyone who is more or less a stranger. Certainly some simple training is important, but not enough. Asking questions and maintaining a conversation is known or can be trained . Still the person, so hired, or just visiting (including a minister, social worker, or just friend, etc.) must “care” about this person with dementia.
Faking will often fail. For many people with dementia, prior to the lateststage, there is enough social intelligence remaining to detect faking. I will put our attention to the hired visitor, but the same arguments apply to all visitors.
My experience from the many years of dealing with such visitors and with a facility leads me to a few principles, some of them obvious. First, success requires continuity, that is, the same person visits repeatedly. Despite whatever memory failing the person with dementia has, relationships can stick in memory. Few relationships bloom on first contact. And then there are clearly good and bad matches, as we all know from our everyday relationships. An agency should send the same person on a regular basis; in a facility there should be the same person assigned to a given resident as much as possible. They should also find ways to evaluate whether this turns out to be a good match. The spouse or other close family member/friend should be encouraged to be around some of the time and their honest evaluation of how this is developing should be solicited. If it is not working, another person might turn out to be a better match.
An extreme example of how effectively a close relationship can work is the man with dementia in the facility ( pseudonym Phil) who had hurt a woman he attacked in her room, after they argued over whose room it was. Phil thought wrongly that it was his room, so they argued. He became angry and struck her; and he was brought out of the room still angry. The facility went into lockdown as the nurse feared that he would attack others. I locked Beverly in her room but went into the hall to at least observe, or even help if needed. Then this very small woman aide walked up to Phil (a large and fit guy), grabbed his hand, and said in an authoritative but calm voice: “Come on, it’s time to go to your room.” He was immediately compliant, accepted her hand, and walked calmly away. I saw her an hour or so later and asked her how that went so well. She said, “I work with him regularly. He can get angry and physical. But he knows me and listens to me when I tell him not to do that.” She had succeeded at engaging “dangerous” Phil into a functional relationship; she knew and truly cared about Phil.
Ultimately it seems to come down to how to train “caring.” This is easy for some, as it seems to be a natural gift. Beverly always had that gift. And I can honestly say that living with her taught me much about how to be “caring.” The women from the agency who came to visit her had learned one of the ingredients, which is to talk with the dementia patient (or anyone) about what has been, and is, important in their lives, about their likes, etc. But they had not learned enough.
Caring requires careful attention to all that is happening in the interaction. The nonverbal aspects of communication are very significant. This requires monitoring the receiver’s reaction to closeness, eye contact, face to face talking, tone of voice, and length of talk. And, of course, the visitor should have a sense of their own nonverbal cues. Length of talk is how long one should talk before giving up a turn. With new acquaintances, it is best to keep length of talk short; with people with dementia, it should always be very short. Tone of voice with people with dementia requires eliminating that sing-song voice we reserve for young children and pets; with older people, it is called “Elderspeak.” And such talk is demeaning to older people, including those with dementia. And while simplicity is a virtue, it can also be demeaning if we fail to engage them. Yes, their thinking is generally compromised; yes, offering choices is best, that is, Yes/No or two choices at a time. Specific issues may be important, such as talking about how nice their hair looks or “What a beautiful blouse/shirt.” Expressing one’s feelings; with a stranger, it may only be “It is wonderful to see you .” For someone close, it can be, “I love you” or something comparable. Engage them!
And touch is especially tricky. If the person with dementia is comfortable with someone being physically close, it might be OK to gently touch a shoulder or upper arm. On repeated visits, this becomes more likely to be accepted. And later a brief, gentle hug may be accepted as well.
The general issue of topic is complex also; the general topics of what interests them, of particular music, food, activities, etc. Asking about family is generally top of the list. And if, in their environment, there are objects to be asked about, especially photographs and unique objects, then ask about them. It can be worthwhile to listen to some music together if a system can be used. Of course, as the dementia progresses, increasingly the topics need to be narrowly concrete.
The presence of more people than you and the person with dementia presents multiple issues. Obviously keeping the person with dementia engaged with you (and the others) limits the range of topics. The trickiest aspect is, particularly where you are working to develop a relationship with this person, is keeping the focus on them. Conversations often drift into other matters of significance to the other participants. Don’t leave the person with dementia out of the conversation for very long, as they generally drift off in a way not typical of most of us. The most critical mistake to avoid is talking about the person with dementia in front of them, as if they are not there at all. It is too easy to assume that this person is so lost that they don’t know; yet they do know. And this contributes to their isolation.
And do not forget that there Is much more going through the mind of the person with dementia than seems obvious. Time after time Beverly has shown me that I have underestimated how much she understands. For example, her childhood friend, on the phone with us only a few months ago, mentioned a troubled family they had known in their childhood. The surprise was that stating the name of the family resulted in her facial expression turning sad and her eyes being on the edge of tearing. Consider the many times she said something humorous when most (including me) would think she knew nothing about what was being said (see blog on Humor). For example, recently (October 2022) Beverly & I were on the phone with her brother Larry and it seemed that she understood almost nothing of the conversation. I mentioned to him that I had just delivered food for “Meals on Wheels.” Larry reacted by calling me a saint. Then he said to Beverly, “Isn’t David a saint?” After a pause, she said very clearly, “Maybe Not.”
The central issue is accepting that people with dementia are still human (previous blog). We should keep- that in our thinking. The fact that this person with dementia seems confused and is often non-responsive should not lull us into thinking there is no one there. If there was one principle to make central for training a caregiver to be a friend, it would be to emphasize in their training the idea that this is still a human person, now handicapped and that they are anxious and upset about how they are deteriorating. Critically, the person with dementia still wants to connect socially. The visitor who thinks that this person with dementia is no longer there will make limited effort to connect and thus certainly not succeed!
Training might require sophisticated, monitored role playing. That should encourage the trainee to read the person beyond the superficial and try to establish a real relationship. And that must include learning to find the mostly hidden mental processing by the person with dementia. Ultimately this requires a grasp that this is someone I really want to have a relationship with, someone I care about. This a person, still human, with thoughts and feelings about many aspects of their life, including who this stranger is that I am seeing now.
Ultimately this all depends too upon having empathy and avoiding pity. “Empathy” and “pity” are, in key ways, opposites. “Empathy” is about grasping the other person’s ideas and feelings. When empathy shows, it will likely result in a positive engagement. If pity shows, the likely result may be negative/or non- engagement. Can we train empathy and thus compassion? Perhaps not, but most people can engage their empathy/compassion instead of pity if they are willing to see the person with dementia as a still functioning human being, one who has reduced capacities and who is suffering and aware that they are losing their functioning and the life they have had. This all is about the state of mind of the visitor attempting to interact with a person with dementia. We do not pity a child who cannot yet say what they want; our best strategy with the child is to have compassion, not pity, and engage them enough to determine what they do want. Just so with the person with dementia. With compassion and caring, each of us can provide the best experience for us and for the person with dementia.