Still Waiting for the Golden Years: Surviving Dementia: Part Two

Why am I writing about dementia in a genealogy-oriented blog? Perhaps you need to look around you at the next genealogy conference you attend. The demographics of those involved in genealogy is just about the same as those at the highest risk for dementia.

If you have a family history of dementia, like I do, then the subject is of interest. In addition, because I deal with people interested in genealogy, I have an ample opportunity to see people who are in some stage of dementia and can usually tell if they are impaired. See Still Waiting for the Golden Years: Dementia and Alzheimer's for an explanation of my involvement.

Is dementia one of those conditions where if you have it, you don't know you have it? The answer is yes to some degree. Since there are no obvious physical symptoms of dementia, you can progress through a number of stages without realizing that you are developing the disease. However, as I have already written in previous posts, dementia may or may not be a disease.

What are the most common symptoms of Alzheimer's?

According to the Alzheimer's Association,  Alzheimer's, the most common form of dementia, progresses slowly through three stages. Other organizations have divided the progression into seven stages. Symptoms vary considerably from individual to individual. The changes to the brain that the medical community believes are related to Alzheimer's begin years before any symptoms can be detected.

In its earliest stages, some of the symptoms of Alzheimer's are common to those who have other cognitive disabilities and even common among people may not have dementia at all. For example, you may have difficulty remembering people's names but that may be some issue you have had for a long time and by itself may not indicate Alzheimer's. It is a cumulation of the symptoms that should be a concern.

Being aware of the early symptoms of Alzheimer's and other dementia-related conditions may allow the person time to live as long as possible and plan for changes in the future. There is presently no cure for dementia, including Alzheimer's.

Quoting from the Alzheimer's Association website, here are some of the early stages of Alzheimer's"

• Problems coming up with the right word or name
• Trouble remembering names when introduced to new people
• Challenges performing tasks in social or work settings.
• Forgetting material that one has just read
• Losing or misplacing a valuable object
• Increasing trouble with planning or organizing

From my own experience, I would add personality changes that include paranoia and ungrounded fear. I would also add that the person may become defensive if confronted with the possibility of impairment. Those around the individual suffering from the early stages may also be in denial about the degree of impairment. I also think the memory test, sometimes referred to as a mini-mental, can be misleading. Some people with no impairment cannot respond accurately or correctly to these ad hoc tests. In addition, there are a variety of other diseases that can cause the same symptoms. 

These symptoms blend over with and overlap with the symptoms of the moderate stage. Again from the Alzheimer's Association website:

• Forgetfulness of events or about one's own personal history
• Feeling moody or withdrawn, especially in socially or mentally challenging situations
• Being unable to recall their own address or telephone number or the high school or college from which they graduated
• Confusion about where they are or what day it is
• The need for help choosing proper clothing for the season or the occasion
• Trouble controlling bladder and bowels in some individuals
• Changes in sleep patterns, such as sleeping during the day and becoming restless at night
• An increased risk of wandering and becoming lost
• Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding

The symptoms in the "moderate" stage can be life-threatening if, for example, the person locks him or herself out of the house in the winter or drives off and fails to return home. This is also the stage when personality changes begin to be pronounced. However, it is not a good idea to focus on any one symptom. I have been known to be unaware of the date or even the day of the week for most of my adult life. 

The last stages of Alzheimer's are obvious. This is why experiencing a close relative with Alzheimer's is similar to seeing the person die twice. Quoting from the Alzheimer's Association:

At this stage, individuals may:

• Need round-the-clock assistance with daily activities and personal care
• Lose awareness of recent experiences as well as of their surroundings
• Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow
• Have increasing difficulty communicating
• Become vulnerable to infections, especially pneumonia

Why is this important to genealogists? Again, many of us find ourselves in the age group most susceptible to the disease. Many of us have years of detailed work on our family history and have gathered substantial numbers of original documents, journals, Bibles, and other important items. What happens to all this when you become impaired? Could you make reasonable decisions about the disposition of your genealogical data? Think about it now, when you can still think about it. 

I am going to write about the strategies that we can take to preserve and protect our genealogical investments. 

See the previous posts:

Part One: https://rejoiceandbeexceedingglad.blogspot.com/2018/10/still-waiting-for-golden-years.html
https://rejoiceandbeexceedingglad.blogspot.com/2018/10/still-waiting-for-golden-years-dementia.html