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

From what was possibly the first indication of cognitive disability until he died from what was most likely Alzheimer's disease, my father lived almost 16 years. In an article published by The BMJ (formerly the British Medical Journal) entitled, "Survival of people with clinical diagnosis of dementia in primary care: cohort study" the findings of the study were summarized as follows:

The matched comparison group contained 112 645 people aged 60 years and over without dementia, with 432 307 person years of follow-up. This group was younger (mean age 72.2 (SD 8.6) years) and consequently had a longer median follow-up time (3.1 (interquartile range 1.4-5.6) years) than did people with dementia (1.3 (0.5-2.7) years). In the dementia group, 41.6% (n=9372) had died compared with 17.5% (n=19 713) in the non-dementia group. More than a quarter of people with dementia transferred out of the practices (27.5%; n=6195) compared with 10.2% (n=11 490) of people without dementia. 

The median survival of people with a diagnosis of dementia was associated with age at first recorded diagnosis. The median survival for people aged 60-69 years at diagnosis was 6.7 (interquartile range 3.1-10.8) years, falling to 1.9 (0.7-3.6) years in those aged 90 years and over (fig 2⇓). The five year survival ranged from just over 50% in 60-69 year olds to 25% in 80-89 years olds.

In short, the study concludes, that "people with dementia have a lower life expectancy than do people without dementia" and "mortality rates are more than three times higher in people with dementia than in those without dementia in the first year after diagnosis."

When we think of dementia, we think of the terrible loss of productive life experiences, but there is another, just as serious, loss from dementia, that is the suffering and loss of productive life experiences on the part of the family members and others associated with the impaired individuals.

There are many progressive diseases such as cancer that rob individuals of life, but dementia in all its forms robs the affected person of life long before they die physically. In my father's case (and my mother's also) as the disease progressed, it was like watching the person disappear in stages. Finally, all that was left was the shell of a body. During the entire time of their illness, my parents were blessed with extraordinary care. But despite the high level of both medical and personal care, the inexorable progress of the disease resulted in an almost constantly worsening tragedy.

There are different types of dementia. Here is a list of the commonly accepted types. For a short explanation of each type see "What is dementia (neurocognitive disorder)."

• Alzheimer's disease
• Creutzfeldt-Jakob disease
• Dementia with Lewy bodies
• Frontotemporal dementia
• Parkinson's disease
• Huntington's disease
• Mixed dementia
• Normal pressure hydrocephalus
• Vascular dementia
• Wernicke-Korsakoff syndrome

Alzheimer's disease is the most common and affects from 60 to 80 percent of all of the people who have dementia. However, since there is no reliable diagnostic method for determining whether or not a person has Alzheimer's before the person dies, the number of actual cases is just an estimate. Another factor that affects the reported incidence of the disease is the fact that some people can have the brain changes presently associated with Alzheimer's and not exhibit any symptoms. Accurate figures would require a specific autopsy on everyone who died. 

Technically, my father was diagnosed as having Alzheimer's and my mother was diagnosed as having Dementia with Lewy bodies, but neither of these diagnoses was confirmed by an autopsy. 

My father was an attorney who graduated from Harvard University Law School. He practiced law in Arizona for almost 50 years. The earliest account of a problem with my father's cognitive ability was about his getting lost while driving. However, this was not at all that unusual, we had been lost a number times on trips. Having now lived in the East for almost a year, I can certainly related to getting lost while driving even with GPS. I am hoping this is not a symptom of dementia. However, as the disease progressed, we started to see personality changes and mild memory loss. During the entire course of the disease, he never admitted to having a problem and became belligerent if the subject was brought up. 

What can you do to minimize the impact of dementia for yourself or for those around you? Unfortunately, if the person suffering from dementia denies the problem, there may be little you can accomplish. But if you have a history of dementia in your family or even if you don't there are quite a few things that you can do that will lessen the impact on you and your family. This series will talk about the ways you can prepare for old age, regardless of the onset of dementia or not but the focus will be on the effects of cognitive disabilities from my own experiences both as an attorney who was actively involved in the issues of old age disability and from our family's experience.