What we may have not touched on enough on this blog is the sense of crisis whenever Alzheimer’s is diagnosed, and just how people can deal with this eventuality. This is especially true for people with early onset who will be fully cognizant of their potential deterioration. Alzheimer’s can be a slow-developing disease, which means patients can have “episodes” while functioning normally at other times.
For many people over the age of sixty – if not younger – developing Alzheimer’s is one of their greatest fears. What needs to be addressed in an early Alzheimer’s patient is the emotional turmoil of feeling they have to face this disease for the remainder their days. Indeed, that emotional turmoil could very well be more pronounced than the symptoms of early onset. To put it another way, while one may not be symptomatic 100% of the time, they will be cognizant of having the disease 100% of the time, so this must be addressed.
This is not to say that early onset Alzheimer’s is just an emotional issue. The symptoms of early onset can be pronounced:
The early indicators of early-onset Alzheimer’s disease are similar to those of late-onset Alzheimer’s. These symptoms include regularly losing items, difficulty executing common tasks, forgetfulness, personality changes, confusion, poor judgment, challenges with basic communication and language, social withdrawal and problems following simple directions.
However, the stereotype of Alzheimer’s Disease is that people with the disease are non-functioning, and this is not actually true. While a person might have episodes, he or she will also be able to function normally. Renowned writer Terry Pratchett is a good example of this. He has recently been featured in a BBC documentary that is a must-see, “Terry Pratchett: Living With Alzheimer’s”:
The 60-year-old writer invited television cameras to follow the “dark path” of his condition over the course of a year for a BBC Two documentary.
Viewers will see him struggling to write his Discworld books and trying out experimental “cures” as he attempts to stave off the symptoms of the degenerative brain disease.
Pratchett was diagnosed with early onset Alzheimer’s in December 2007 and donated $1 million to fund research into the condition.
Here’s a speech Pratchett gave to the Alzheimer’s Research Trust in 2008. His life has held tremendous difficulty since his diagnosis, but he’s entirely lucid and thoughtful – which may not be most people’s conventional wisdom about how the disease operates. The most soothing words you can tell an Alzheimer’s patient may be that their life is not suddenly over – even if there is no immediate cure. As Pratchett says himself, never losing his wit, “Everywhere I go, people expect me to be some kind of a wreck and it’s beginning to get on my nerves.”
Treating Early Onset Alzheimer’s
It is important to recognize that there is pharmaceutical treatment available for early onset AD:
A class of medications called cholinesterase inhibitors delays the worsening of symptoms for an average of 6 to 12 months for about half the people who take them. According to the Alzheimer’s Association, these medications work by supporting a neurotransmitter called acetylcholine. This chemical increases communication between nerve cells. It is thought that the breakdown of this communication may cause Alzheimer’s symptoms.
Brand names of this type of medication include Aricept (donepezil), Exelon (rivastigmine) and Razadyne (galantamine). Each medication is approved for specific stages of the disease, which range from mild to severe.
Another medication, called Namenda (memantine), works by supporting a different neurotransmitter, called glutamate. Namenda, approved in 2003, is the only medication in this class.
While the research into Alzheimer’s Disease medication may be heartening to those who fear developing the disease, there’s a pressing timeline in the here-and-now for those already diagnosed. It is important to note there are some treatments available, and to understand that it is possible to function normally to a high degree for some time. There is time to plan, time to live one’s life, contrary to some common beliefs. In addition to the above-listed medications, psychological counseling for the patient and anyone closely involved is important as well. Even with early diagnosis of onset, coping with the disease will require the support of family members, colleagues and friends.
This post will be the first in a series on coping with early onset Alzheimer’s disease, including how the biotechnology industry is addressing early onset specifically, the potential increase in early onset cases because of better diagnostic procedures, and further information regarding how patients can best cope with the disease using the methods now available.
