I have been asked numerous, numerous times what is dementia. Is it the same as Alzheimer's or is it different? So with the help of the Alzheimer's Association and the Association for Frontotemporal Degeneration (AFTD), I will try to explain the difference and what it means in our lives.
Dementia is not a specific disease rather it is a general term for a decline in mental ability severe enough to interfere with daily life. It's an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. Memory loss is an example. Alzheimer's is the most common type of dementia and accounts for 60 to 80 percent of cases.
Greg specifically has Frontotemporal Dementia or FTD.
The word frontotemporal refers to the two lobes of the brain that are damaged in this form of dementia. The frontal lobes of the brain – situated behind the forehead – control behavior and emotions, particularly on the right side of the brain. They also control language, usually on the left. The temporal lobes – on either side of the brain – have many roles. On the left side, these lobes control the understanding of words. In Greg's case both lobes of his brain are affected.
Frontotemporal dementia occurs much less often than other forms of dementia (such as Alzheimer’s disease or vascular dementia). However, it is a significant cause of dementia in younger people (under the age of 65). Frontotemporal dementia is probably the third most common cause for people in this age group. It affects men and women about equally.
Frontotemporal dementia is most often diagnosed between the ages of 45 and 65, but it can also affect younger or older people. This is considerably younger than the age at which people are most often diagnosed with the more common types of dementia such as Alzheimer’s disease.
There are three types of FTD:
-----behavioral variant FTD
-----progressive non-fluent aphasia
------semantic dementia
We have never been told which type Greg has. In doing some research I have not been able to pin point which type I believe he has.
In contrast to Alzheimer’s disease, people with early-stage frontotemporal dementia tend not to have problems with day-to-day memory or with visuospatial skills (judging relationships and distances between objects). It is unusual for a person with frontotemporal dementia to be aware of the extent of their problems. The symptoms are more often noticed by the people close to them. As with most forms of dementia, the initial symptoms can be very subtle, but they slowly get worse as the disease progresses over several years. The rate of progression of frontotemporal dementia varies greatly, from less than two years to 10 years or more. Research shows that on average, people live for about eight years after the start of symptoms. As frontotemporal dementia progresses, the differences between the three types becomes less obvious.The cause of frontotemporal dementia is not known. Experts assume that the disease reflects a mixture of genetic, medical and lifestyle factors.
Autopsy studies show that the death of nerve cells in the frontal and temporal lobes is linked to clumps of abnormal proteins inside the cells, including one called tau. The tau protein may take the form of Pick bodies, which gave frontotemporal dementia its original name of Pick’s disease.
Frontotemporal dementia runs in families much more often than in the more common forms of dementia. About one third of people with it have some family history of dementia.
About 10–15 per cent of people with frontotemporal dementia have a strong family history of it, with several close relatives in different generations affected. In contrast, strongly inherited early-onset Alzheimer’s disease affects less than 1 in 1,000 people with Alzheimer’s. Typically in these cases, frontotemporal dementia is inherited from a parent as a defect (mutation) in one of three genes: MAPT, GRN or C9ORF72.
Frontotemporal dementia can be hard to diagnose, because it is uncommon and does not initially cause memory problems. Doctors may also not suspect dementia in a middle-aged person.
Frontotemporal dementia may be misdiagnosed as atypical Alzheimer’s disease (a form of Alzheimer’s disease without early memory loss). Behavioral symptoms may be mistaken for depression, schizophrenia or obsessive-compulsive disorder. Problems with language or movement may be misdiagnosed as stroke.
After a person dies, it is possible to make a pathological diagnosis of frontotemporal dementia as the changes to the brain can be directly seen at a post-mortem.
Researchers are working to find effective new treatments for frontotemporal dementia, but there is currently no cure and the progression of the disease cannot be slowed.
Greg is mainly affected with his short term memory and his language---he can not remember the names of common objects and he does a lot of word searching.
Our biggest fear is that because FTD is thought to be inherited our sons will be diagnosed with FTD someday. I pray daily that they will find a cure for this disease and that there will be better awareness that Alzheimer's and dementia. I also pray that this curse will be will be broken so that future generations do not have to be burdened with disease.
A quote from Brenda Bernard, Greg's cousin
" How many of us are affected? Two relatives right now ... Already lost my dad and 2 uncles. What have I learned? Caregivers are gifts from God, but their journey is incredibly hard. Let's pray for their strength and a cure!!
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