2010-12-03 / Columnists

Health & Harmony

Dementia
By Dr. Nancy Gahles

There. I said it. The dreaded word. Dementia. The diagnosis that no one wants to receive. The words that follow go something like this, “there is nothing to do for this condition.”Lovely. Here we have another state where conventional medicine has no answer for us. In fact, neither does alternative medicine.

Aricept is a prescription drug that purports to slow the progression of the disease. That is, once you have been diagnosed with it already. This is a bit like closing the barn door after the horse has run away. Too little, too late. Complementary and alternative medicine offers treatments for the effects of dementia, that is, behavioral and mood changes associated with the cellular deterioration in the areas of the brain responsible for cognitive and executive functions as well as their sequelae, anxiety and depression.

In 2011, the baby boomers will turn 65. The generation that heralded change in society through peace demonstrations and sit-ins, are now in the vanguard of early onset Alzheimer’s and senile dementia. Here they have arrived at well deserved retirement age only to discover that a plethora of chronic diseases with no cure awaits them. Dementia is one of these conditions that are devastating to the person walking that road. It exacts a huge toll on the family caregivers. I remember when “senile” was a word for grandma or grandpa. It was gently spoken to understand why they couldn’t remember our names or where we went to school. They would ask you the same question over and over and we were taught to be compassionate. I remember being stoic about it as I gave the requisite number of minutes in their company while I fidgeted to run out the door and join my friends. Today, I had lunch with my dear friend, and sat stoically in her presence while we plotted a course of care for her early onset Alzheimer’s.

Never the one to take no for an answer, I am plumbing the depths of my knowledge of neuroanatomy and neurophysiology for answers. Always positive that there is a solution that simply hasn’t been thought of yet, I am searching the literature for a clue. Ever compassionate, I am standing by her as she closes her practice after 30 years, and assuring her that there is another phase of life ensuing that can be equally as productive. Hope springs eternal, right? But she forgot where we were meeting and got lost in the cab en route. Perhaps, this is a familiar scenario for you or someone you know and love.

Dementia. There. I’ve said it again. Now what do we do? It isn’t grandma anymore. It’s your Mom or Dad, your husband or wife or your peers. I wondered what the new infrastructure will be once she retires. For all of us, when we leave the familiar routine of a 30- year career, there is a state of confusion until we get adjusted. I suppose most retirees go through this phase. What happens when you have cognitive impairment and can’t negotiate the transition? Familiar routines serve to dampen the effects of memory loss. Once those routines are removed from life as you knew it, you are confronted with a world of unknowns, uncharted territory. Anxiety, loneliness and despair accompany this change. The stress exacerbates the memory loss and all symptoms. Cortisol, a stress hormone, further damages brain cells. At all costs, we need to reduce the stress.

I made a few calls to elder care specialists inquiring about state-of-theart programs for this emerging population of our boomer friends. I was told that services are available in home or placement can be made in an assisted living institution. Institution? Is that what is state-of-the-art? Basically, what we, the collective community of healthcare providers and services, have to offer is assistance with activities of daily living. ADLs is what it is called in that world. This means that someone comes into your home and helps you shower, toilet, shops and prepare meals for you. ‘Basic’ is the operative word here. There may be transportation provided to out-patient facilities for therapeutic programs. ‘Patient’ is the operative word here. My friend is a young 64-year-old. She isn’t grandma. She is an intelligent, accomplished doctor, artist, photographer. She doesn’t belong in a nursing home program weaving baskets with 90-year-olds. And surely, she will not go to such programs. Her plight is one that the baby boomers with early onset Alzheimer’s or dementia will all face.

The family caregiver is the one to whom the task falls to coordinate an environment of comfort for the person who is in transition. In the case of early onset, where an assisted living ‘place’ is not yet necessary, the burden of care rests on the spouse or partner or child. Usually, care will consist of employing someone to be with the person while the family caregiver is at work. Many caregivers are long distance ones. That means that they travel to and from the ‘patient’s’ home on a daily basis, tending to their needs for shopping, food preparation, cleaning and personal hygiene. Often, the psychological and emotional needs of the person with dementia go unaddressed. There aren’t enough hours in the day to tend to that. The emotional, physical and psychological toll that caregiving exacts from the family member is enormous and yet another consideration in this complex issue.

As I recall my conversation with one eldercare specialist, whose specialty it is to place people in assisted living, I asked her what was the cutting edge practice for early onset dementia. She replied that placement in assisted living WAS the cutting edge. Lord help me and save me! You have GOT to be kidding me! Truth is stranger than fiction. Where have we been all these years? What have we been thinking? Why has there been no foresight in this regard? So, that’s me, wailing at the wall. And I return to my original premise. There must be a better way. There is a huge pool of talent in these people. The brain is plastic. There are other ways to exist purposefully without specific cognitive functions. It’s a brave new world out there. We are not limited to the confines of the tried and true neural pathways. There is a vast complex Universe of interconnectedness waiting to be explored. What about Stephen Hawkings? What about quantum physics? What about whole systems theory? ‘Brave’ is the operative word here. Bravery to explore.

There will come a tipping point when the population of 65 and over increases to a majority of people living in this state. Do we wait for that point? I say we start now. Create think tanks in your community. Support groups abound for people with ‘conditions’ that are chronic and progressive. We can give these new meaning when we create a new paradigm. Think tanks instead of support groups. Support smacks of enabling. Think tanks suggest that one can still think. One can consider options and create new ways of being from their own situation. Just because you can’t remember certain facts or names doesn’t mean you are totally brain dead. Other areas of your brain are functional. Areas that perceive color and visual stimuli from art is one place I would begin. Studies show that the perception of light and colors stimulate feelings of happiness. Let’s look closely at that piece. Off-loading feelings is healing, for sure.

Talking about what you are feeling and how you are processing those feelings can be part of the think tank. Taking those feelings and creating solutions is productive.

Everyone needs meaning and purpose in his or her life. Especially toward the end, whatever the end is. If we suppose, from all that we know and have seen, that dementia and Alzheimer’s is a long road into darkness, then let’s start now to create a light bright enough to lead the way. Let us not fail in our duty to find that spark of light in everyone affected and fan the flame. Let us not be faint hearted on our path. We are all in this together. And, yes, you will get your turn to be on the receiving end. What goes around, comes around. It’s the wheel of life. Make your trip count!

May The Blessings Be!

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