A New Opportunity

In July of 2009 I launched my blog page project. It was meant to serve as an outlet for what I was experiencing and learning as a caregiver for aging parents with dementia / Alzheimer’s. It has also grown into an outlet that served my desire to communicate and educate others by means of my writing.

To date, I have written over 50 essays and articles advocating caregivers, positive motivational topics, and articles and posted another 20 about the science and research at work behind the scenes looking first for a  means of halting AD, and then, eventually, finding a cure.

Now a new opportunity has arrived that will enhance my blog with the addition of a new feature.

Within the past month, I was invited by Book Nook, a division of Louise Hay’s Hay House Publishing Group, to begin reviewing books written by their stable of both established marquee writers and speakers such as Louise Hay, Dr. Wayne Dyer, Gregg Braden and Sonja Choquette  as well as the work by some of their newest authors.

After reading and reviewing each book of my own choosing from their newly released titles, I will post my review upon my blog web site as well as at Amazon.com.

I have been a fan for many years of both Louise Hay and Dr. Wayne Dyer and count 5 of Dr. Dyer’s recent books among my favorites. 2012 marks the 25th Anniversary of Hay House Publishing.

I am most excited about this opportunity and look forward to completing and sharing my book reviews along with my continued work as a dementia caregiving advocate.

Thank You Hay House Publishing and Book Nook for this wonderful project!


Jeff Dodson
June 26th 2012                                                                                              

Looking For A Sign - I Love You No Matter What

Each day they arise and get ready to make the trip from their homes where they live alone to the nursing homes where their spouses now reside.

For  one, a round trip of twenty miles; for the other the round trip comes close to sixty miles.

Canes, walkers and crutches are taken as part of what walking steady nowadays requires.  Walking any distance is taxing, it hurts and adds to the possibility of an accidental fall.

Sometimes the trip made is every day, sometimes it is only three times per week.

The goal is always the same. To visit with and comfort their life partner as much as is still possible. Last week they were not recognized, but on Monday she called out my name: leaving the men folk thrilled to the core. They drove home sitting taller, bothered less by the arthritis and spurs up and down the back, bothered less by the diabetes that taxes there energy. Inside they know that final recognition of them is close to finally evaporating: just another part of the dementia destruction process.

Both wives, you see, have Alzheimer’s disease. One has been a nursing home resident for nearly six years; the other for almost nine months.

For their generation, the vows of “for better or for worse, in sickness and in health,” meant vows that you lived with for life as they stood resolute on that wedding day some sixty plus years ago with their new brides.

The disease has been devastating to both couples yet they remain loyal, steadfast and dependent upon each other, drawing spiritual energy as a life line of hope.

As caregivers for all four of these parents, we marvel at their strength and reserve of endurance. On some days, I can almost hear playing in the background, the artist Yanni’s song entitled, “Until the last Moment,” as our fathers come and go in support of their dying wives.

As caregivers, my wife and I salute and admire both sets of parents who are teaching us every day about what raw courage, guts and tenacious resolve is all about.

These kinds of attributes are often written about in times of war and upon the battlefield. They also arise among folks fighting a fatal disease in having to face their own pending mortality or that of their loved one.

Our parents have been and will always remain our remarkable unique teachers.

With Love, Devotion and Admiration.


Jeff Dodson
June 17th 2012

The World Health Organizations Report Dementia: A Public Health Priority Part II

This is Part II in a blog series about the World Health Organizations’ recent report entitled, Dementia: a public health priority, released in early April 2012. Part I was posted on April 19th on this blog site.

So what is a current definition of Dementia?
The WHO report on Dementia: a public health priority provides the following detailed narrative of what neurological science considers dementia:

“Dementia is a syndrome due to disease of the brain - usually of a chronic or progressive nature - in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgment. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behavior, or motivation. This syndrome occurs in a large number of conditions primarily or secondarily affecting the brain.

Alzheimer’s disease is the most common form of dementia and possibly contributes to 60 -70% of cases. Other major contributors include vascular dementia, dementia with Lewy bodies, and a group of diseases that contribute to frontotemporal dementia. The boundaries between the subtypes are indistinct and mixed forms often co-exist.

Dementia affects each person in a different way, depending upon the impact of the disease and the person’s pre-morbid personality. The problems linked to dementia can be understood in three stages:

early stage - first year or two:
middle stage - second to fourth or fifth years;
late stage - fifth year and after.

These periods are given as an approximate guideline only - sometimes people may deteriorate more quickly, sometimes more slowly. It should be noted that not all persons with dementia will display all the symptoms.”

The WHO report goes on further to list the following symptoms that are associated with each of the early, middle and late stages of dementia syndrome.

Early Stage
Becoming  forgetful, especially regarding things that just happened

May have some difficulty with communication, such as difficulty in finding words

Become lost in familiar places

Lose track of time, including time of day, month, season, or year

Have difficulty making decisions and handling personal finances

Have difficulty carrying out complex householding tasks

Mood and behavior:
- may become less active and motivated and loose interest in activities and hobbies

- may show mood changes, including depression or anxiety

- may react unusually angry or aggressively on occasion

Middle Stage
As the disease progresses, limitations become clearer and more restricting, an individual becomes very forgetful, especially of recent events and people’s names

Have difficulty comprehending time, date, place and events; may become lost at home as well as in the community

Have increased difficulty with communication (speech and comprehension)

Needs help with personal care: (i.e. toileting, washing, dressing)

Unable to successfully prepare food, cock, clean or shop

Unable to live alone safely without considerable support

Behavior changes may include wandering, repeated questioning, calling out, clinging, disturbed sleeping, hallucinations, (seeing or hearing things which are not there)

May display inappropriate behavior in the home or in the community (e.g. disinhibition or aggression)

Late Stage
The late stage is one of nearly total dependence and inactivity. Memory disturbances are very serious and the physical side of the disease becomes more obvious.

The person is usually unaware of time and place

Have difficulty understanding what is happening around them

Unable to recognize relatives, friends and familiar objects

Unable to eat without assistance, may have difficulty swallowing

Increasing need for assisted self-care (bathing and toileting)

May have partial or complete bladder or bowel incontinence

Change in mobility, may be unable to walk or be confined to a wheelchair or bed

Behavior changes may escalate and include aggression towards caregiver, nonverbal agitation (kicking, hitting, screaming or moaning)

Unable to find his or her way around in the home

The preceding  was quite a sobering list of symptoms outlined in the 3 stages.

The purpose of this report is to raise worldwide public awareness about the scope and breadth of this disease as well as advocating greater governmental action and involvement nationally and internationally.

Final comment
The Alzheimer’s Association of America released a projected statistic this past week about Alzheimer’s (which represents up to 70% of all dementia cases) that was stunning:

the cost of dealing with Alzheimer’s disease during the next 40 years will cost 20 trillion dollars.

Dementia which includes Alzheimer’s disease is a worldwide scourge that must be stopped.


Jeff Dodson
April  24th 2012

Dementia: A Public Health Priority Part I

The World Health Organization (WHO), a branch of the United Nations, and Alzheimer’s Disease International, just issued a 112 page report entitled,  Dementia: a public health priority.

It is a well crafted and well written report that warrants first hand reading if you wish to educate yourself further about the spread of this fatal disease.

Because of the amount of information contained in this report, I have decided to share the most informative aspects of it in two parts.  Part One, here, will highlight the more basic worldwide statistical data on dementia and what the report suggests ought to be done.  I will devote a second followup blog; Part Two, devoted to what dementia is and an outline of its symptoms.

Alzheimer’s has finally gotten big enough, scary enough and definitely lethal enough to individuals and society as a whole that it has captured the attention of most of the world governments. In the report, there is a lot of language about dementia prevalence or how widespread it has grown.

Listed under the opening section of the report called the Executive Summary are some frightening statistics that follow here.

In 2010 the total number of people with dementia worldwide was estimated at 35.6 million with a projection to nearly double every 20 years. By the year 2030, the total will be 65.7 million and by the year 2050 the total will come to 115.4 million.

The total number of new cases of dementia each year worldwide is nearly 7.7 million, implying one new case every four seconds.

In 2010, the worldwide estimated costs of dementia was approximately $604 billion (in US dollars).

The following quote from the report speaks to risk factors associated with dementia.

“Research identifying modifiable risk factors of dementia is in its infancy. In the meantime, primary prevention should focus on targets suggested by current evidence. These include countering risk factors for vascular disease, including diabetes, mid-life hypertension, mid-life obesity, smoking and physical inactivity.”

A secondary headline portion of the report listed as Key  Messages contains takeaway facts for

everyone.

Dementia is not a normal part of aging.

35.6 million people were estimated to be living with dementia 2 years ago. There are 7.7 million new cases of dementia each year. The accelerating rates of dementia are cause for immediate action, especially in low and middle income countries.

The huge cost of the disease will challenge health systems to deal with the predicted future increase of prevalence. The 2010 costs, noted at $604 billion, are set to increase even more quickly than the prevalence.

People live for many years after the onset of symptoms of dementia. With appropriate support, many can and should be enabled to continue to engage and contribute within society and have a good quality of life.

Dementia is overwhelming for the caregivers and adequate support is required for them from the health, social, financial and legal systems.

Countries must include dementia on their public health agendas. Sustained action and coordination is required across multiple levels and with all stake holders - at international, national, regional and local levels.

People with dementia and their caregivers often have unique insights to their condition and life. They should be involved in formulating the policies, plans, laws and services that relate to them.

The report summarizes what I would refer to  as a ‘call-to-arms-list’ of steps to be taken.

These include:

Promoting a dementia friendly society globally by:

Making dementia a national public health and social care priority worldwide.

Improving public and professional attitudes to, and understanding of dementia.

Investing in health and social systems to improve care and services for people with dementia and their caregivers.

Increasing the priority given to dementia in the public health research agenda.

There are world nations ahead of the curve with respect to this disease as well as many that are well behind it. 

Japan is one that is ahead of the dementia curve having developed it’s own public long-term care insurance system in April 2000. 

Austria is another nation that has developed a program well ahead of many other nations. Austria offers a two week respite program for caregivers and people with dementia that includes time off and an educational program for the caregiver and a package of cognitive memory training, occupational therapy, and physical training for the person with dementia.

There is still an urgent need to stir up public awareness and understanding of what dementia is and what it is not across all levels of our world society. Raising awareness and advocacy are two of those basic first steps. 

Part Two of this blog series will focus on an up-to-date definition of dementia and its symptoms.

Jeff Dodson

April 19th 2012

      

Stepping Into Their World

To be sitting in a doctor’s office waiting for news of a diagnosis is frightful. To then hear the spoken phrase: “it appears that you have dementia of the Alzheimer’s type,” ramps up the fear and terror factor even more. That spoken phrase was a game changer. Life as you have lived it, enjoyed it and taken it for granted up to that point in time just changed: irrevocably changed.

The very fabric of your world comprising what you think, how you think, what you think about and the lifetime of memories that it is all foundationed upon will all start to unravel. The awful part about it is that the unraveling had already started some 10 to 15 years previously. No pain, no discomfort, no real obvious clues as to what was headed your way.

The degenerating changes underway and those to come conspire to remove you from a healthy cognitive world and transport you into a smoke filled, murky nether world.  In time, you become completely adrift upon the dark waters of this realm. Your only contact with anyone really is via a proverbial life rope and buoy provided by a dedicated caregiver.

You cannot swim out of the world in which you are now floating within. Your caregiver has the potential to come and go between the world where they remain and the world you now inhabit.

The challenge for them is to learn the language and behaviors that comprise how you survive in Alzheimer’s World. By making this extra effort, this extra commitment, your caregiver gains the ability to step through the doorway dividing the normal world from the realm of Alzheimer’s.

Learning the language and behaviors of AD is no easy task. While it is one primary language, there are perhaps thousands of different dialects within it. Each dialect is the result of how one individual adapted to AD and attempted to create and put in play their own desperate survival measures. 

The language course for AD has no end. Not in a quarter, a semester or in a couple of years. For the devoted and compassionate caregiver, it is a life course: governed solely by the remaining life span of the person under their care.

I couldn’t help but thinking today that perhaps it was an inability to make this transition between our world and AD world that lead to the blog news article entitled, “Man Kills Wife Suffering with Alzheimer’s and then Kills Himself,” that appeared on Bob DeMarco’s Alzheimer’s Reading Room web site.  The gentleman featured in the article, now deceased by his own hand, may not have been able to ever reconcile and allow for the changes that befell his beloved wife.  I do not judge this individual for the action he took. Neither do I condone the path that he chose. I do feel compassion and heartache for the both of them and their families. May this couple rest in peace and grace.

As a married caregiver that works in partnership with his wife with two AD family members for the past 8 years now, I can only say that it is absolutely crucial to learn the language of AD. It will enable you to then travel between the two worlds. It is the responsibility of someone to be able to do this, since your loved one cannot reenter our world again. 

Learn the language: be the scout or pathfinder that stays connected to your family member. 

You will not notice it at the time. You may not notice for awhile after they are gone. Eventually though you will notice that something worthy and honorable has changed the who you are on the inside.

Find the courage to be that person.

Jeff Dodson

March 30th 2012

The 2012 Alzheimer's Report

The 2012 Alzheimer’s Disease Facts and Figures Report was released in February 2012 by the Alzheimer’s Association. It provides the latest statistical information regarding this disease including it’s effect upon those who have it, those who must care for them, and the economic cost of it all.

Out of this 71 page report emerge a few facts that remain scary and disturbing.

The diagnosis of Alzheimer’s Disease still carries with it an eventual death sentence. 

There are still only 5  FDA approved medications that can be taken for AD. All of them merely act to slow the advance of the disease for a short while only. None of them stop it completely and none of them will cure it.

5.4 million Americans is the estimated number of people who have been diagnosed with AD.

Almost two-thirds of Americans with Alzheimer’s are women.

Every 68 seconds, someone in America develops AD. In 2009, this occurrence rate was one every 70 seconds. Over just the past 3 years, that’s an increase of thirty-seven more people each second developing the disease.

Between 2000 and 2008, deaths attributed to Alzheimer’s disease increased 66 percent, while those attributed to the number one cause of death, heart disease, decreased 13 percent.

Over 15 million Americans provide unpaid care for a person with AD or other dementia's.

Eighty percent of care that is provided at home is delivered by family caregivers.

In 2011, these folks provided an estimated 17.4 billion hours of unpaid care, a contribution to the nation valued at over $210 billion.

At least 800,000 people in the United States who have Alzheimer’s disease are living alone, and people who have other forms of dementia add substantially to that total.

All of these statistics are incredible and unacceptable. 

Over the past 30 years,  our citizenry, scientists, and government rallied and united to  wage war against heart disease and breast cancer. It paid off.  The odds of surviving these diseases has risen dramatically along with the opportunity to return to productive lives. Not so yet with AD.

It’s time for a change in our thinking and awareness about AD and cutting loose the purse strings of government research investment dollars. For 2012, government funding for AD research stands at $498 million. The Alzheimer’s Association scientists have called for spending to be increased to $2 billion.  It should be bumped up to $5 billion.  Let’s get busy.

Jeff Dodson

March 27th 2012

Spiritual Nutrition

On the way to taking my wife to work this morning, we stopped at one of our Elk Grove Starbucks. I grabbed a Pike’s blend to go. While stirring in some sweetener, I noticed some tri-fold brochures entitled Nutrition By The Cup. Hmmm. A rundown on the calories and nutrients contained within? Educate their patrons and give them additional reasons to purchase Starbuck’s products? Great ideas. I know I’m already hooked.

Contemplating this further, it occurred to me that a substantial focus in our country lately has been upon personal health. Take care of our bodies. TV shows and magazine articles are all buzzing about getting healthy, staying slim and looking good. We are instructed to be mindful of what we are eating, how we are exercising, and the need for making positive changes. All in the effort to improve the quality of our lives and enhance our longevity. Get busy fixin up your looks, your weight and your stamina. All worthy goals.

What about looking at the nutrition topic from a different angle? What are we collectively and individually doing about our Spiritual Nutrition?

What active and consistent nutritional programs do we have in place when it comes to our spiritual awareness and well-being?  What positive energy meals and exercises are we offering to the spiritual side of who we are? Regardless of your faith or religious preference, good health on the inside is a must-have proposition as well as good health on the outside.

Perhaps it’s time to strike a balance. Feed the body. That’s one half of who we are: the outer package.

Time to feed and take care of the nutritional needs of the other half of who we are: that glorious software that powers us up.

You may consider the spiritual side of who you are as a primary internal core application.

Feed and cultivate an appreciation for it. And don’t forget to listen in for those whispered alerts from your Source signaling  incoming downloads and updates!


Jeff Dodson
March 9th 2012