Wednesday, 19 February 2020

Care Partner Wednesday--How To Have Demetia and a Fulfilled Life



Remember my friend from a few weeks ago?
A short, gentle man with a soft voice, he'd admitted his wife to our care floor a few weeks ago, and now participated in his first care conference. This meeting, with all the staff who care for his wife giving input, gave him a chance to ask questions. Many questions. An intelligent man, he had no experience with dementia before this and it seemed every day he felt blindsided by some new crisis.

The time drew to a close and I'd dismissed the doctor and several others who had given their input. He turned to me and said, "I just have one more question. I smiled at him, inviting him to continue.

"Will she get better?"

My heart lodged firmly in my throat, I searched for how to answer him. The wild gyrations of my mind could only settle in one place. The truth.

"No, she won't get better. It's a progressive disease, and it will progress." I paused, gathering my thoughts. "Her disease will progress, but you've already seen an improvement in her quality of life, and yours, and I believe that can continue."

He gave me a quizzical look.

"Remember when she lived with you in the apartment and you looked after her. What were the hardest parts?"

"She slept most of the day and stayed awake all night. I was exhausted. And she wouldn't let me help her. She needed help getting dressed and with other things, and she got angry when I tried. And I was afraid of what she'd say in public."

"And have any of those things improved in the weeks she's lived on the first floor?"

"At first it was so hard not to sleep with her. But the reality is, now I'm getting more sleep. And she's starting to be up during the day more. Not every day, but at least half the week. I don't have to care for her and she's learned to accept care from the ladies who help her. She's sometimes still aggressive, but they are better at it than I was. They just go away and come back, and eventually, she cooperates. And it's really nice having dinner together every night. Almost like a date."

I smile at him. ""Our goal is to support you as well as your wife. We want both your lives to be the best they can be. You are welcome any time, and you can tell us about any concerns you have. Feel free to participate in activities together."




He looked puzzled. "You know, I couldn't believe it the first time she went to group exercise. She was never a joiner. And in later years wouldn't do anything without me. But now she goes to music groups and even flower arranging. It amazes me!"

I laugh. "She still wants to sleep all of some days, and sometimes she acts like every activity we suggest is beneath her. But I'm really pleased with how she's becoming a part of the community. There will be physical changes and cognitive ones, too, as the disease progresses. But there will be joy."

He stood and shook my hand. "That's the biggest surprise. I expected all the bad parts. But I didn't expect the joy."

As you go forward in your care partner journey, look for the joy.


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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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Wednesday, 5 February 2020

Care Partner Wednesday--How To Break Through the Agony of a Dementia Diagnosis


A short, gentle man with a soft voice, he'd admitted his wife to our care floor a few weeks ago, and now participated in the first care conference. This meeting, with all the staff who care for his wife giving input, gave him a chance to ask questions. Many questions. An intelligent man, he had no experience with dementia before this and it seemed every day he felt blindsided by some new crisis.

The time drew to a close and I'd dismissed the doctor and several others who had given their input. He turned to me and said, "I just have one more question." I smiled at him, inviting him to continue.

"Will she get better?"

The moment you hear the diagnosis, the questions flood your brain in a confused mass. What does it mean? What does the future hold? What should I do? Some questions are so elusive you don't know to ask them until later, but the answers are ones you wish you knew earlier. This month, we will look at Dementia 101 and go back to basics.

Are dementia and Alzheimer's the same?

No. Think of dementia as a huge umbrella with many spokes. It's a weird-looking umbrella, though, because the spokes aren't all the same size.

Alzheimer's Disease
If we think of the umbrella again, a large section of it would be called Alzheimer's disease, as it's by far the most common diagnosis. Alzheimer's is progressive. Although someone with the disease may have a day where they are exceptionally cognitively alert and function well, the decline in their cognitive status can be seen clearly over a period of months and certainly years. Depending on the age of diagnosis, people can live with Alzheimer's for 20 years, although eight to ten is more common. Prevalent aspects are memory loss, especially short-term memory, poor judgement, word-finding difficulty, and the need for more help in the areas of hygiene, eating, dressing and all aspects of daily living.

Vascular Dementia
Although the symptoms may look the same, vascular dementia progresses differently from Alzheimer's. Its source is from a stroke or a series of small strokes called transient ischemic attacks (TIAs) or unnoticed small vessel disease. Because its progression is based on a series of "events,"  it looks like a series of downward steps. The person with vascular dementia will continue stable for a period of time and then will have an "event" which causes a change. People often recover from TIAs, but usually have more than one, and they take their toll on cognition. Each TIA has the potential to cause permanent damage to the brain. The prognosis varies greatly.

Lewy Body Dementias
"Lewy bodies are abnormal aggregates of protein that develop inside nerve cells, contributing to Parkinson's disease (PD), the Lewy body dementias (Parkinson's disease dementia and dementia with Lewy bodies) and some other disorders."1 Lewy Body Dementia (LBD) is another umbrella term for a whole group of diseases where these Lewy bodies are present. Parkinson's dementia is one of these diseases. Lewy body dementia is another.

Parkinson's Disease Dementia
Not everyone who has PD will develop dementia, but about 70% do. The combination of the motor and other challenges of PD and the mental difficulties of dementia make this especially burdensome. Some people experience hallucinations, delusions, paranoia, vivid dreams and other difficulties. Cognitive symptoms begin at least a year after the motor symptoms and usually develop gradually.

Dementia with Lewy Bodies
Under the umbrella of  Lewy Body Dementias, is Dementia with Lewy Bodies. Confusing, right? Someone should have come up with a different name. LBD involves both motor and cognitive decline. LBD is the second most common dementia after Alzheimer's and a correct diagnosis is important.


"She has dementia. What difference does it make if we know what kind?


A significant difference. It affects treatment, medications used and many other interventions.
Some medications that are used to control behavioural symptoms in Alzheimer's can actually make the symptoms of Dementia with Lewy Bodies worse. With correct medication and treatment, someone with LBD can improve and experience a good quality of life.

My friend with the poignant question? I'll share my answer to him in the third blog of this series.

A diagnosis of dementia can bring feelings of panic. Take a step back, do some research, ask questions and talk to other care partners. Support is there for you!

1. https://en.wikipedia.org/wiki/Lewy_body

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Care Partner Wednesday--How To Break Through the Agony of a Dementia Diagnosis