Wednesday, 12 February 2020

Care Partner Wednesday--How To Have Dementia Without Letting It Have You

"She's getting older. I guess some fuzzy thinking can be expected."
Did you use these or similar words to rationalize the changes you saw in your loved one? It's common to believe that someone whose age is advancing would naturally experience cognitive changes. We call them "senior moments" and laugh them off until they become more severe.

Cognitive changes are not a normal part of ageing. 

Dementia is a progressive disease which is not necessarily present in an elder. The belief that all elders experience some form of memory loss and it's just a matter of degree and time, is why ageism is rampant in our culture. But that's a subject for another blog.

Dementia is not only a cognitive disease. 

It's never just one thing.

It makes sense when you think about it. The brain, as the epicentre of our beings, controls everything. So if the brain is impaired through dementia, the effects of that are going to ripple through the rest of the body.

Because dementia is progressive, even when it strikes a healthy adult, it will eventually have physical implications. It's important to realize these and understand what can happen in your loved one's body as well as their mind. Add to all this the possibility of other diseases and their implications and you have a complicated situation.

What can you expect?

1) Cognitive changes

  • Poor decision making.
  • Erratic and unsafe driving.
  • Uncharacteristic changes (a tidy person suddenly becomes messy.)
  • Inability to participate in activities which were normal for them before (such as playing cards, reading, other hobbies.)
  • Forgetting appointments etc.
  • Inability to handle money, unpaid bills, abnormally erratic spending.
  • Withdrawal from activities which used to bring pleasure.
  • Eventually, speech may be affected and words may be elusive or come out garbled. In some people with end-stage dementia, speech is lost altogether.
2)  Motor changes
  • Unsteady gait, leading to frequent falls.
  • Eventually, walking without help may become impossible and unsafe.
3) Eating

  • Forgetting that they have eaten, an elder may want to eat all the time, causing weight to balloon.
  • Some crave sweets and diet becomes unhealthy and unbalanced.
  • Many find they have less and less interest in food and little hunger. Weakness and weight loss result.
  • Eating can become messy, and activities which wouldn't have been acceptable before (such as eating with fingers or spitting out food) are present.
  • In later dementia, swallowing difficulties make a diet change to a minced or pureed diet necessary. Your loved one may require cueing or even feeding in order to eat. Eventually, eating may stop entirely, either due to lack of interest or inability to swallow.
4) Elimination
  • Bladder incontinence is usually first, followed by bowel.  The sensation of needing to eliminate is no longer present.
 5) Mood

No two people are alike when it comes to mood and some dementias have the potential to affect emotions more than others. Your loved one may never experience fluctuations in mood, or they may be extreme.

  • Mood swings including anger, aggression, heightened anxiety or withdrawal. Sometimes all in an hour.
  • A tendency toward "sundowning" or heightened emotional expression later in the day.
  • Some people experience an inability to function outside of their "safe" area, so they are uncomfortable outside of their house. As this disease progresses, this safe area may shrink to one room.
6) Sleep patterns
  • Days and nights mixed so sleep occurs during the day.
  • Wandering at night when the person is wakeful, sometimes leading to unsafe situations.
  • A part of night wandering may include hallucinations and delusions.
Not a comprehensive list, this makes the point that the changes you see as the disease progresses can affect every aspect of life. However, as Dr. Bill Thomas says, and I've quoted many times, "If you see one person with dementia, you've seen one person with dementia." Each person is unique and it's important to see them as a whole person with challenges which need to be addressed, rather than someone who is broken.

Your challenge, as a care partner, is to know they have dementia and identify how the disease affects them, but not to allow dementia to have them.

Special thanks to Amy Rockford Hale, R.N.  for her input on this blog.


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