Q: My aunt has dementia. I have financial Power of Attorney but she doesn’t want me involved. I worry about the financial consequences if I don’t get involved, and the damage to our relationship if I push too hard. How hard should I push?
Having a conversation about changes a person sees in a loved one as they age can be difficult. Especially when the changes affect daily living. If you notice signs of cognitive decline in a family member, exercise your curiosity to look a little deeper.
In Mild Cognitive Impairment and the earliest stage of dementia, some people are still driving without risk to themselves or others. But with a degenerative disease, when is it no longer safe to drive, and what is the best way to convince a person to stop driving?
Aducanumab is designed to slow the progression of cognitive decline in those experiencing MCI (Mild Cognitive Impairment) and early stage dementia. Aducanumab is the first to actually slow the decline of dementia. But it is surrounded by controversy. Let's examine that.
Our human drive to survive may escalate symptom-related behaviors if dementia is present. Survival instincts come from the hippocampus and the amygdalae. The different ways that dementia changes their functions causes the symptoms of dementia to escalate.
Sometimes dementia-related delusions involve unhappy events, memories or fictional narratives of the present. Unlike dementia-related hallucinations, there is a plot or story line when delusions of the present occur.
Repetitive actions may be dementia-related symptoms which signal over- or under-stimulation, or an expression of undetected pain. The person with dementia may resort to repetitive actions such as fidgeting or pacing when provoked by these triggers.
When people living with dementia have verbal outbursts, it can be inconvenient for dementia caregivers, embarrassing, or hurtful. Although inappropriate, verbal outbursts are not intentional. Even if the words used are articulate, they may not express the speaker’s true feelings if dementia is involved. Verbal outbursts are a common symptom of dementia.
When a person living with dementia hits, kicks, spits, shoves, or shows other aggression towards a caregiver it may be motivated by pain, strong dislike, or fear. I recently coached a professional caregiver, Lila, who had a troubling encounter with a resident at the assisted living community where she worked.
Reality orientation is usually not recommended, unless danger threatens the person with dementia or those around him or her. And, whenever possible, scapegoats can help dementia caregivers remain trusted by their family members or clients living with dementia. A few examples...
Instead of hearing “the same old stories” you are receiving clues about what is important to the person with dementia – people, places, events, and values. These reminiscences are the artifacts of the person’s life. The narratives are often about important events – usually positive – that define their identity.
(A plea to my colleagues in dementia care.)
Occasionally, I hear a colleague say that people with dementia are like children, or are childlike, or – worst of all – that you have to treat them like children if you want to overcome challenging behaviors. (Which is an adjacent problem. My thoughts on the term “challenging behaviors” are expressed here and here, towards the bottom of each blog post.)
It’s true, when people learn a loved one has dementia, they are hungry for information about the changes it will bring in a way not unlike an expectant mother is hungry for information about her pregnancy and parenting. But that is where the similarities between dementia and children end.
As dementia experts, people listen to what we say, adopting both our ideas and our language. If we give credence to this idea, family and professional caregivers will adopt this framework as a tool to orient themselves in caregiving. And it’s a dangerous orientation.
First, some of the myriad ways a person with dementia is NOT like a child.
- A child has no life experience. A person with dementia has lived a life full of wishes, dreams, joys, disappointments, challenges, triumphs, struggles, love, hurt, tragedy, triumph.
- A child does not know what it means to work. A person with dementia has gained skill, worked toward the objectives of a higher authority, and cooperated with others to meet goals.
- A child has never been responsible for another human. A person with dementia has experienced the monumental joy and anguish of caring for another person.
- A child has never known the intimacy of romantic love. A person with dementia has been entwined in the most splendid and private bond with another human life.
- A child is far from reaching his or her cognitive peak. A person with dementia has flourished in his or her cognitive peak years, and grieves the loss of abilities slipping helplessly out of grasp.
It is dangerous to give anyone in a caregiving role such a framework. Because if we think of the person in our care as childlike, we give ourselves permission to put the person with dementia in a subordinate role, which can erode trust and threaten dignity.
We encourage children to “do better” because it is part of our role to encourage them to stretch and grow, which they are capable of doing. But with dementia, this “childlike” framework invites us to use language that is judgmental or corrective, when the truth is the person is doing the best that they can in any given moment. Any language that is not fully supportive will only frustrate or hurt him or her.
Most importantly, attending to a person with dementia as we would a child negates a lifetime of experience, an advanced sense of identity, and centers our attention on the mechanics of care rather than the emotions surrounding care needs.
More and more often, I am quoting Maya Angelou as I train professional and family dementia caregivers. I think her words apply beautifully to this topic, and I ask you to contemplate my thoughts through her lens:
“People won’t remember what you said or did, but they will remember how you made them feel.”
A call to my colleagues: As you inform and educate others about dementia and dementia caregiving, please help them to understand the dangers of comparing those with dementia to children.
Dementia destroys a person’s ability to detect and accurately process visual, auditory, and tactile data; and it makes people feel vulnerable against real or perceived threats. Vulnerability creates a victim syndrome which, when exaggerated, can trigger false accusations.
For people with dementia, everything happening now is unfamiliar, because the way they process visual, auditory, tactile, and emotional data is damaged by dementia, and so nothing seems as it once did. What is familiar is what was happening, where they were, and who they were with when they were in their cognitive peak – when they had command over their minds, their bodies, and their lives.
...a person with dementia simply cannot remember, asking you repeatedly, “When are we going to the dentist?” Short term memory is usually the first cognitive function to betray them. To the person with dementia, every time they ask is the first. So responding with “Don’t you remember?” is useless...
It can be so difficult to tell the difference between normal "senior moments" and the signals of cognitive decline. There can be several reasons for this. Off the top of my head...
The best answer to that question is it depends. You must first evaluate the overall situation. Where should an aging senior live? There are many factors that you should look at to make an informed choice. Let's explore the options for yourself or a loved one.
My caregiving clients have been asking, What should I give my loved one as a holiday gift? You might be wondering the same thing. Here are some guidelines, some idea sparks, and some examples to help you make informed choices for a loved one with dementia as you make your gift list this year.