Why do we want them to show us they know us?

frost on a wire fenceSo often I talk with people who are upset because a loved one in the later stages of dementia no longer recognizes them or other family members. Most of us find this painful. Often, we respond by trying to jog our loved ones’ memories and urging them to recognize us.

Is this logical? Is it kind? We need to think about what dementia is and what someone experiencing it has lost before we ask him or her to meet our need to be recognized. When a client fails to recognize his or her loved ones, I see shock and pain on their faces, a realization that receiving love from their spouse or parent may never happen again. Their grief is palpable, but their efforts to elicit recognition seldom bring results. Most often, the person with dementia will politely pretend to know who everyone is, while feeling bewilderment, failure, and fear.

Memory loss is a disability.

Dementia causes memory loss. It is, at present, irreversible. There may be days when your loved one recalls more than others, but the downward trend will not change. When someone has lost memories due to dementia, trying to jog their memory will not help.

People with dementia have lost the ability to retrieve memories, not just the memories themselves. Although a healthy brain can take in hints and reminders, then locate and retrieve a memory, the brain with dementia cannot. Asking a loved one to use memory to recognize you is the same as asking someone who is deaf to hear to you, or a blind person to see you. They do not have the equipment to comply. Asking them to use what they do not have is both hurtful and embarrassing.

Do what they cannot do.

You do have memory, though, and you can use it. Whether your loved one is still walking around and able to communicate verbally, or bedbound and unable to display any signs of awareness, you can use your memories to connect and share love. You can tell her who you are without demanding that her eyes fill with recognition. You can tell him why you’re so happy to see him and that you were there yesterday and the day before, too. You can recount for her a favorite shared memory from your childhood or describe for him a place he loved to visit with you.

We can enrich our loved ones’ worlds by using our skills, rather than asking that they use the ones dementia has taken away from them.

Show him you know who he is.

Particularly heartbreaking to me is the family member who waits by a loved one’s bedside for some indication – the slightest gesture or look to prove that a moment of clarity or recognition has occurred. “I just want her to see me one more time.” But the chance of being present for a moment of clarity is slim. How much better to spend our time at the bedside showing them that we know who they are, and filling their present with stories from happier times.

They experience the moods we bring them.

This is a very important truth to understand. Because people experiencing dementia are losing their rational thought processes, they cannot use recall, planning, or distraction to bring themselves out of negative moods. So, a negative mood can last a long time. However, this same lack of rational thought leaves them open to the moods we bring them. Because they still have intuitive thought, they continue to feel their own and our emotions.

This gives us, as caregivers and family members of people with dementia the responsibility of bringing positive moods and emotions to our clients and loved ones. Let’s do our grieving in private and bring to them our happiness and love. Let’s fill their present moments with the good times we recall. What we bring will last.

Help! Dad thinks I’m Mom! Dementia and mistaken identities.

purple clematis flowersWhen a loved one with dementia stops recognizing us, or responds to us as if we are someone else, it can be both disconcerting and hurtful. However, it’s important that we understand what may have caused our loved one to believe we are someone else. When we understand the changes in cognition and the perception of reality that occur with dementia, it’s less painful to deal with mistaken identities.

He’s living at some time in the past.

We know that dementia takes away memory, but do we understand that losing short term memory can move a person’s psychological present ever deeper into the past? With the dementia that results with Alzheimer’s Disease in particular, people lose all most-recent short term memories first, so that although they cannot recall the near past, they do recall the distant past. What they also lose is knowledge of the appearance of their loved ones as it has changed over the years. When knowledge of the past is being wiped out starting with today, then yesterday, then all of last week, last month, last year, it causes the person’s belief of where he is in life to recede ever deeper into the past.

If your father’s perception of what is the present is now 20 or 30 years in the past, he may see in your face the woman who was his wife and your mother in her earlier years. He expects you to still be the little girl he remembers from that time, too.

He’s forgotten what you look like.

We also know that people experiencing dementia stop recognizing their friends and loved ones due to a progressive loss of the ability to recall facts and the rational thought process of forming associations. But it may also happen because dementia is affecting the area of the brain that enables us to recognize features and familiarity in human faces.

All of us have varying degrees of expertise in the area of facial recognition. In Britain, Scotland Yard employs a special unit of super recognizers who can recognize criminals or terrorists in grainy video footage even when they are wearing ski masks. Most of us don’t have that level of facial recognition skill, but dementia can affect that area of the brain and take away what skills a person once had.

You sound like your mom.

Although people experiencing dementia lose the ability to make associations and recall faces, the ability to recognize voices seems to last longer. We often find with our clients that they won’t immediately recognize a family member who walks in the door even though they know who the person is when talking to them on the telephone. After a minute or two they often warm up, perhaps because we recognize voices in the same way that we recognize and recall music.

In any case, when you greet your father or telephone him, although you don’t look familiar, he may be hearing your mother’s tone and intonation in your voice, and so mistake you for her.

How should we respond?

The most important thing is to avoid reacting with concern or hurt. The inability to recognize loved ones is part of experiencing dementia. Grieve in private, but respond to your loved one with calm acceptance or redirection. You might be able to say, “Oh, Mom’s not here yet, but she’s coming later.” If redirection doesn’t work, just accept the mistaken identity.

One of our clients came home from a family event convinced that his son was in fact his brother. It didn’t matter that the two men had lived their lives at the opposite ends of the country, were very different in personality and age, or even that the brother had died. Our client’s belief that his son was his brother never changed. We all simply accepted this new identity designation and encouraged his love and admiration for “both” men.

On the road with dementia – getting there in one piece

Barn in snow with sunsetThe holiday season is stressful at the best of times, but taking someone who has dementia to visit family or friends over the holidays can quickly become an ordeal. Whether you plan to drive to the next town or fly across the nation, take some time beforehand to think about how travel and change affect people who lack memory and rational thought.

When people lack rational thought, they are unable to perceive cause and effect, or follow a sequence, or prioritize events or information. So, although it may be obvious to you that getting on an airplane and flying for several hours means that you will not be sleeping in your own bed that night, it isn’t likely that someone with dementia will see that as a certainty. In addition, although for most of us there is at least a semblance of logic in the process of waiting at the ticket counter to check our bags, shuffling along in a security line, being frisked by a uniformed TSA agent, having our carry-ons gone through, and then waiting interminably at the gate for an overdue flight, such sequential events are not something people with dementia can understand and plod through easily. Frustration and meltdown are more likely to occur when something seems random and unfathomable.

In addition, deadlines mean nothing when you cannot track time or read clocks, and meeting them is even less likely when you can’t see that putting shoes on is essential while drinking a cup of coffee isn’t. (In writing this I realize that I could pick a better example, because for some of us with healthy brains coffee feels more important than the shoes most mornings.)

“Where are we?”

Without memory, we live entirely in the present (see my earlier blog on the experiential self vs. remembering self). So, if we find ourselves in unfamiliar surroundings, our natural reaction is concern – or at least curiosity – and we continue to have that reaction every time we realize that we don’t know where we are. (Keep in mind that the psychological present is about three seconds.) Although a small child might be bored and ask several times how much longer the trip will last, someone experiencing dementia is likely to feel fearful in the unfamiliar surroundings and need reassurance or information constantly for the duration of the time spent away from home.

“Do you need to use the bathroom?”

When someone is experiencing dementia, s/he may not be able to interpret feelings such as hunger or the urge to use the bathroom. So, although we may be able to trust a child’s report of not needing to “go,” a loved one with dementia might say no and truly not realize that s/he did need a bathroom until after an accident occurs. Best to say you need to go yourself in hopes that being in a bathroom will prompt using the toilet, and be sure to carry wipes and a change of clothes for possible emergencies.

Getting lost in a restaurant.

Even people in the earlier stages of dementia can become flustered and lost when they walk back out of a bathroom in a restaurant or any strange place. Be sure to keep an eye out to see that your loved one finds the way back to your table, or back to their bedroom in a strange home. In the panic of not knowing which way to turn upon leaving the bathroom, they may become unable to recognize familiar faces as well, and head for an exit.

Should we leave home at all?

You may now be wondering whether you want to travel with someone who has dementia. It is a task that requires careful planning, as well as keeping a close watch on your loved one’s reactions as s/he meets so much new information and stimuli. However, if you make sure that someone is always on duty – watching for ways to ensure that security needs and understanding needs are met – travel can be enjoyable. So, try to have more than just one person available for caregiving. And recognize that stress and change exacerbate memory loss and confusion, so your loved one will function less well when away from the familiarities of home.