Wednesday, June 6, 2018

Continued Growth in Understanding Dementia / Alzheimer's and Supporting Those Who Live With It

My comments to Kate after watching her presentation on Dementia in Singapore. 


Just finished watching your Singapore presentation. Magnificent!

Not to ride on your coat tails but in so many ways I feel that we are telling the same story, you from the point of view of one diagnosed with dementia and me from the point of view of loving the person who received the diagnosis. In some ways might I be so bold as to say WE ARE THE YING AND YANG OF DEMENTIA CARE? KINDRED SPIRITS?

In your presentation you talked about so many of the ways that I was able to intuitively support Gregory. 

In some ways I believe that your “attitude” towards the necessary “care giver” better called “care partner” have changed. Also, you have begun to refer to some of the serious changes that occur towards later stage Dementia and allude to how “care” at those later stages can change so dramatically and often times, become necessary even at the risk of loss of autonomy for the person diagnosed.

Since each person is a unique individual; anything we think, say, or propose about supporting those with the diagnosis and those loving those with the diagnosis is almost like a “shot in the dark.”

"A shot in the dark" especially since the day to day expression of the disease can change so dramatically and sometimes so quickly: Sometimes here, sometimes diminished, sometimes returned as of old, sometimes returned but somewhat weaker, eventually gone forever.

Sometimes the interactions are so convoluted that the care partner not only is at a loss to interpret what is going on but also how to interact with and deal with the experience. 

Sometimes the slow "loss" of the person you love so much is life changing and at times disabling to the care giver when no one and nothing can really "help" except maybe faith that things will be better in the morning. 

Sometimes the day to day, minute to minute energy that the care partner must give to supporting and monitoring the person with Dementia is exhausting and affects the carer's health, making the giving even more difficult.

There is NO one right answer and most often people are looking for that ONE “silver bullet, correct” answer. There is the obvious list of how to go about the care partnering (love, respect, understanding, compassion,etc) but no details donot automatically fill in. 

One of my new quotes might be "As in life, as in Dementia … just a little more complicated.” In some ways the Dementia is not the problem, living a good life no matter what shows up is the problem!

The trajectory and progression of Dementia complicates matters more, leaving us feeling so helpless. Since it is a disease that affects the brain; logic, understanding, thinking, processing, cognition, etc --  it complicates things even more -- let alone the effects of the physical, physiological,  and emotional for everyone involved.

The work of changing the world's attitude towards Dementia and how we support those with Dementia is in some ways just beginning and feels almost impossible.

Going from seeing the person and not just the disease, going from care communities to community caring, providing support and techniques to care giving partners, seeing the disease as a diability and providing support to live as well as possible, providing emotional support to all parties affected, educating medical practitioners, etc will get better and will take time ... we just want it now!

Kate, I so look forward to spending some time with you in Chicago. I have so much to learn from you and still have so many questions or maybe just a good hug and sitting together quietly over a glass of wine will be enough! Be well,



Most of what I was able to do for Gregory came directly from my love for him, our respect for each other, the humanity in both of us. People often said I did such an amazing job of being his care partner and my reply is always, “How could I have done any differently? 

For me, what I did is also touched on by the Buddhist principals of The Four Nobel Truths and the Eightfold Path. Spirituality of any type helps us cope. Faith in something helps as well. For Gregory it was not his Catholism and for me not my Judiasm but for both of us Buddhism did provide some peace of mind!


  • The truth of suffering (Dukkha)
  • The truth of the origin of suffering (Samudāya)
  • The truth of the cessation of suffering (Nirodha)
  • The truth of the path to the cessation of suffering (Magga)


1. The Right View
By right view, Buddha means seeing things in the right perspective. Seeing things as they really are, without any false illusions or pretenses. He wanted his followers to see and to understand the transient nature of worldly ideas and possessions and to understand that they can attain salvation only if they practiced the right karma.

2. The Right Thought

Buddha says that we are what we are because of what we think. What goes on inside our minds (our thought process) determines our course of action. It is, therefore, necessary to follow the path of Right thought or Right Intention. To have the Right Intention or the Right Thought, a person should be aware of his purpose or role in life and is studying the teachings of Buddha.

3. The Right Speech

Buddha asks his followers to speak truth, to avoid slander and malicious gossip and to refrain from abusive language. Harsh words that can cause distress or offend others should also be avoided while also staying clear of mindless idle chatter which lacks any depth.

4. The Right Action

Behaving peacefully and harmoniously; Right action, according to Buddha, lies in adherence to the following guidelines:
- Staying in harmony with fellow human beings
- Behaving peacefully
- Not stealing
- Not killing anyone
- Avoiding overindulgence in sensual pleasure
- Abstaining from sexual misconduct
- Not indulging in fraudulent practices, deceitfulness and robbery

5. The Right Livelihood

By laying down this guideline, Buddha advises his followers to earn their bread and butter righteously, without resorting to illegal and nefarious activities. He does not expect his followers to exploit other human beings or animals or to trade in weapons or intoxicants.

6. The Right Effort

Buddha believed that human nature imposes undue restrictions on the mind at times, causing a person to harbor ill thoughts. So we have to train our mind to think in the right direction if we wish to become better human beings. Once we gain control over our thoughts and replace the unpleasant ones with positive ones, we shall be moving in the right direction.

7. The Right Mindfulness

The Right Mindfulness, together with the Right Concentration, forms the basis of Buddhist meditation. By proposing this, Buddha suggests his followers to focus mentally on their emotions, mental faculties, and capabilities while staying away from worldly desires and other distractions.
It refers to the ability of the mind to see things as they are without being led astray by greed, avarice, anger and ignorance.

8. The Right Concentration

This eighth principle laid down by Buddha is fundamental for proper meditation. Zazen (or, Zen meditation) is the way used in Zen to reach the right concentration or "state of mind". Needless to add, this is the most vital of all the aspects stated in the Noble Eightfold path since, without proper meditation, an individual cannot move on to a higher level of well-being.

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