Dementia takes away a sense of self—but we can give it back (part 1 of 5)

SnowdropsAt DAWN, we see ourselves as being both remembering selves and experiential selves. We know that people with healthy brains are able to both live in the present (experiencing what is happening in the moment) and also to use recall to remember and reflect on things that have happened in the past. We know that a lot of what gives us a sense of self—that story of where we come from and who we now are—comes from our remembering selves. It is also our means of feeling nostalgia and recognition, and of sensing the familiar.

Our clients are not so lucky. With dementia, because they are losing not just memories but also the ability to use memory, they lose their remembering selves. The past experiences and memories that have shaped who they are become unattainable. They become unable to recognize what is familiar and feel perpetually not at home.

Become a storyteller.

When we understand this, we can help our clients and loved ones feel more comfortable and at peace in the present by bringing to them their happy memories. We can tell them their memories and recall our mutual good times for them—in the form of stories.

If you love someone who is experiencing dementia, become their personal storyteller.

Be the person who comes with joyful memories rather than sorrow. Instead of hurt feelings over what they can’t remember and concern about their failures, bring stories of earlier times. Be a companion who cheerily recounts good times and happy stories from their childhoods and earlier years.

This is the first step toward helping someone who is experiencing dementia retain a sense of self. Over the next four weeks, I’ll detail four more areas in which we can help our loved ones and clients feel more comfortable and at ease.


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.