Difficult People and Dementia

see through boxersWhen I hear the statistics about older adults living with dementia, I immediately dismiss them because I believe they are just too low. I know there are many people living with dementia that were never diagnosed and so they have never been counted.

I understand why families choose not to pursue testing. However, I also know that there are so many factors that could contribute to create symptoms of dementia that some might be living with it needlessly.

There are a host of drugs that can alone or in tandem with other drugs may imitate dementia (The Washington Post).

I recently was involved with a family who were very concerned about their father. He was explained to me as a “very difficult person.” As I met with him and the woman who helps him out regularly, it was very clear to me that he had some form of cognitive issue. However, all of those around him are just chalking up his behavior as a personality quirk. The family confirms that he did not always behave in this manner, but over the years he has got more ‘difficult’.

As I was talking with him about how I could help with some of the daily money management issues it was clear he did not comprehend where some of his income was coming from — some was from military service and had been coming to him for over 60 years. There were several small things that demonstrated to me he was having trouble comprehending and processing the information. The fact that he has been unable to pay or manage his day-to-day finances is a big clue. So often I am called after there has been a financial boo-boo that was too glaring to ignore any longer. Ideally, you don’t want to strip them of their control, but just layer in some help.

My final clue was that when I met him, he was in his boxer shorts. He lives in a high-rise complex and was down in the lobby talking to a neighbor when I arrived. As we return to his apartment, I find that I can see right through his mesh boxers to skin. I mentioned this to the woman who is helping him on a regular basis and she confirms that she will ask him to put on a second pair before they leave for lunch. He is intelligent and curious, and as a man in his 90’s, I don’t think he recognized that he is walking around in public in his underwear.

I recognize all of the reasoning we used in my family. You want to respect and honor an individual, but often, it seems to reach the point of failing to possibly address the source of the behavior changes. Maybe they are caused by medication or even hearing loss (you don’t understand what your don’t hear.) For a variety of reasons, I ask that if you find yourself in this position, you advocate to get some medical attention to eliminate possible causes for the change. Suggested. 

 

According to the World Health Organization: “Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.”

Lying to the ones we love.

Two things that should be a part of every caregiver bootcamp:

  1. An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
  2. There are times when honesty is painful for everyone when a loved one has dementia. When my mom wondered when Dad was coming home from the hospital, I initially walked her through his death and how we were all surrounding him. I still puddle at the memory of these conversations and it’s been more than five years since I had them with Mom. She relived the pain as did I. Why didn’t I just say that he would be home in a few days? I had a fixed belief that honesty was the best policy … but there were many times when it didn’t serve my Mom.

I wish I had learned and understood this much earlier in my journey as a family caregiver. It will take some time to understand and adapt. However, being armed with this information can help you be a better care partner.

When I finally learned this information and how to apply it, I promised myself that I would tell the truth once and after the initial conversation would find a kinder way to respond to Mom’s questions or demands.

Once I learned how to change, life for both of us got better. Shared.

Knowing the type of Dementia Helps Everyone

I didn’t handle the diagnosis of my parent’s well. I thought that hearing a doctor tell them they had dementia would suddenly make helping them easier for me. I finally realized that it was equally devastating to my Mom every time she was told.

For a large majority of individuals with vascular dementia – the type that comes after a stroke – they are unable to recognize their loss. My Mom had no physical changes, and for the first few months thought I was making up the fact that she had a stroke. The medical term is Anosognosia and I wish I knew and understood this when my Mom was diagnosed. She was medically unable to perceive that she had difficulty with her thinking and memory.

In the years since I lived through caring for two parents with dementia, I have found many individuals that don’t understand why a diagnosis mattered at all.

A recent story on NPR Is It Alzheimer’s Or Another Dementia? The Right Answer Matters reinforces the need to get a diagnosis. Apparently, most people default to the belief it is Alzheimer’s, and having some insight can also help the care partners manage better.

I have had a long-standing discomfort with the share of voice Alzheimer’s has taken. First and foremost is because most people don’t even know it is the most common form of dementia. I didn’t realize it until my Mom was diagnosed with Vascular Dementia, while my Dad was diagnosed with Alzheimer’s.

What I have learned is that the primary types of dementia all come with varied behaviors, risks, possible treatments and care plans. One form of dementia comes with symptoms that present more as a personality change than symptoms of dementia. In general, changes in behavior, mood, and memory should all be discussed with your primary care physician. Knowing more can help everyone and I hope you will help learn more should you be concerned about your own health changes or those in a loved one. Encouraged.

Brush away Alzheimer’s?

I can hardly wait until they have some proven options to prevent and even cure Alzheimer’s … and maybe even all of the other forms of dementia. It’s so devastating to the individuals and their loved ones.

It was hard to witness the changes in my parent’s and it was sad to slowly lose those beloved traits and quirks their dementia’s stole away.

I do see some older adults who start to skip the health maintenance tasks they regularly followed as they age. Some make sense … like the colonoscopy. Is there an age where you might stop getting this screening?

I do know my parent’s no longer wanted to visit the dentist. I fear the day when my current dentist retires. Seeing him and everyone in his office is like visiting dear family friends. Will I some day feel the same way?

Could dental hygiene be one of the best prevention’s? If you haven’t seen the news, here is a link to a recent report on the study. Hoped.

44 Million Unpaid American Caregivers

taskoverwhelmingYup, those of us doing it are often surprised to find out our friends and colleagues are in the same situation. Most of us step in and do it quietly. We may share the critical events as they occur, but often our feeling that this is a family duty usually means we don’t share the many ways that caregiving impacts us.

I was recently interviewed about the experience and am honored to be included in the stories that appeared in the NY Post, and Moneyish.

For those of us that have lived it, we know it’s overwhelming. My wish is that more employers will start to recognize and consider programs to help those stepping in to help their loved ones. Hoped.

Cognitive Life Expectancy and Women

dealwithitIn 2010, a 65-year-old woman could expect to live 14.1 years with good cognition, 3.9 years with mild cognitive impairment and 2.3 years with dementia — according to Eileen Crimmins, AARP chair of gerontology at the University of Southern California’s Leonard David School of Gerontology. I love data, and a recent article has many key facts that should encourage us to better plan for the rest of our lives.

The generation above us is failing. I saw it with my parents who planned well conventionally, but had no idea their bodies would outlast their brains. The stats sometimes lead us to believe it is not happening at the level of frequency I see it happening to my friends families.

We all should prepare for the worst, be it our bodies outliving our brains, or our brains outliving our bodies. Most likely, we are all going to need assistance before we take a celestial departure from this earth.

The stats on what a 65 year old woman can expect, were one of many key facts in an article by Judith Graham Research find seniors seem to enjoy longer brain health than in the past.

Other notable key facts:

  • Of Americans 65 and older, about 20 to 25 percent have mild cognitive impairment while about 10 percent have dementia, according to Kenneth Langa, an expert in the demography of aging and a professor of medicine at the University of Michigan
  • Notably, college graduates can expect to spend more than 80 percent of their lifetime after age 65 with good cognition, according to a new study from researchers at the University of Southern California and the University of Texas at Austin . For people who didn’t complete high school, that drops to less than 50 percent.
  • A new study from researchers at the Rand Corp. and the National Bureau of Economic Research finds that 10.5 percent of U.S. adults age 65 and older had dementia in 2012, compared with 12 percent in 2000.
    • The percent of people affected is declining which is great news, but the bulge in those over 65 means that more people in total will have dementia.

A few facts can go a long way. I hope these facts will help you and those you love plan well for the rest of your lives. Shared. 

DealingwithDementia Named a Top Alzheimer’s Blog for 2018

I’m honored to be named a Best Alzheimer Blog for the 3rd year in a row by Healthline.

For those of you that have been reading for a while, you know I kinda have a beef with the use of Alzheimer’s. It is confusing to the millions of families who have loved ones with one of the other forms of dementia … of which Alzheimer’s is one type. I found this diagram a few years ago because I was totally confused when I was told Dad had Alzheimer’s, but Mom had Vascular Dementia.

What is Dementia
Understanding Dementia

I plan to continue writing and hoping I can help make this journey for others a little easier. Encouraged.