I received this email today and thought the questions/answers should be posted here:
"My family has been reluctant to agree to a brain donation with my [loved one] and I would rather have most in agreement before making that decision. However, in the event that does not happen, does having a DNA test done prove helpful (in the event this does prove ultimately to be a genetic issue)?
I think the major objection is two-fold...first, let [my loved one] be after [the] battle is over. Second, if the knowledge doesn't help as far as prevention, why pursue the knowledge...
...And, explaining to family members all that is involved. I'm just curious about how to convey any benefits in the knowledge beyond what I have already done. Oh yes, the issue of expenses involved has been mentioned, too."
Others can post their answers to these questions. Here's my reply: (please note that I'm a layperson so this reflects my simplistic understanding of things)
Q: "...does having a DNA test done prove helpful (in the event this does prove ultimately to be a genetic issue)?"
A: I'm not exactly sure on whom a DNA test would be done. If you are thinking that a DNA test would be done on blood relatives of the loved one, note that there's NO DNA test available that is diagnostic for Lewy Body Dementia. If there were, I think many of us would have taken it! If you are thinking that a DNA test would be done on your LBD loved one, the same answer applies.
The only way a genetics test for LBD could be developed is to have brain tissue. So, the idea is that researchers have a repository of brains from those with pathologically-confirmed LBD, allowing for the DNA of these (deceased) people to be analyzed. Once a genetic marker can be identified, then a test can be developed that can be used in living people.
There are four genetic mutations for Parkinson's Disease. These tests are available now. (See 23andMe.com, for example.)
I hope that others more knowledgeable will weigh in here.
Q: "I think the major objection is two-fold...first, let [my loved oned] be after [the] battle is over."
A: Everyone will have his/her own view of this. It is impossible to say what the "correct" view is. My view is that the person is dead and has no need for his/her brain any further.
My father's view was the same. Presumably, he donated his brain because I told him the knowledge derived would be of great benefit to me. My husband and I both signed up for brain donation at the same time my father did. This took the sting out of the discussion, I think.
What I did not truly appreciate until after Dad's death was how enormously proud I am of him that he did donate his brain. It is the ultimate in generosity. Not only has he helped his blood relatives but he's helped all of us by making brain research possible. My view now is that this was one very positive thing that came out of my dad's negative experience.
It's also given me closure that can only come with the certainty behind his diagnosis. The value of that cannot be minimized.
Q: "Second, if the knowledge doesn't help as far as prevention, why pursue the knowledge..."
A: I do think the knowledge derived from brain research will ultimately lead to identifying the cause and a cure.
Q: "..And, explaining to family members all that is involved."
A: Please read above as to what is involved.
Q: "I'm just curious about how to convey any benefits in the knowledge beyond what I have already done."
A: Please read Dorthea's post here:
(this link updated as of 2/15/10)
She conveys the idea that brain donation is the natural progression of caregiving.
Q: "Oh yes, the issue of expenses involved has been mentioned, too."
A: The most I've heard of people paying is $1500 for the tissue procurement. (That's what I paid for my dad's brain procurement.) Most people I've helped with these arrangements pay $600. Some families also have to pay for transportation; this depends on the circumstance.
If you live in South Carolina, there is a pathologist there who will do the tissue procurement for free. The family will have to pay for transportation.
If you live in Florida, there are some circumstances where the tissue procurement is free. Basically, a long application has to be filled out, the person has to be seen at a nearby medical facility, and the person has to agree to brain donation. This all takes time. The family may have to pay for transportation. If this "free" route doesn't work, families can still participate in brain donation; they simply pay the procurement cost.
I hope that others will share their answers to these questions.