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Monday, November 10, 2008

This article from NW University Website http://www.brain.northwestern.edu/mdad/frontal.html

Notes in Red are personal additions based on our family experience

Psychosocial Issues

The psychological, social, family and financial issues that affect individuals with frontotemporal dementia are drastically different from those that affect individuals with Alzheimer's type dementia. When dementia occurs earlier in life, issues such as working, teenage children and financial stress are different from the issues dealt with by individuals who are older and most likely retired. Planning for the family's financial security and for the education of children becomes a difficult prospect when an individual is faced with a dementing illness in the prime of his/her working career. The nature of the symptoms themselves are often embarrassing to family members and there may be loss of friends and other sources of social support. [If we had only known, but this family didn’t. Michael and Patsy masked the symptoms very well for years. The docs told us, because they were intelligent and had a strong work ethic, they were able to function more effectively and longer. The docs asked us if they drank alcohol alot...oh yea they did. Docs said it was common for FTD patients to drink, they do it to cover up the slow creeping symptoms they don't know how to handle. When Michael retired, his decline was more rapid, again the docs defer to “not keeping the brain active”. Once he retired, he wasn’t feeding his brain; socially, educationally, or literally (good foods). Patsy took time off from work to write and publish an instructional manual for Windows 95 & 98 (she was a Microsoft Certified Systems Engineer). Because she moved away from the normal work environment into an home office environment, she wasn’t feeding her brain socially, educationally etc. When she tried to reenter the workforce, her skill sets had declined and was not able to secure the same level of employment. She worked as an admin assistant, but was let go when they claim she made several errors like ordering too many lunches etc. She gave me information (proof, which might dispute some of the reasoning they used to let her go, but I never did anything with it as we were so busy just getting through the days. I figure Humana (the company she worked for) just didn’t know what was going on with her and some of her odd behaviors. Once we moved her to be closer to us, she was not able to get a job, although did volunteer work. This did help her maintain daily functions until the wrong medications were given to her.]

Finally, most adult day programs and residential care facilities are not equipped to address the special needs of the younger patient, especially if the behavioral symptoms are difficult to manage. As more is known about the disease, more policy changes may come into effect. Some residential care and adult day programs are recognizing the needs of the younger dementia patient and are beginning to offer services to meet their needs. Before making any decisions, it is best to investigate your options. [When this happen to our family, there were really no options or assistance for a young person with this illness. Her son and daughter-in-law first took her into their home, until her suicide attempt. Then we took her in for a bit, but almost impossible due to her increasing agitated state and nonstop wandering. When a doctor diagnosed her with “brain shrinkage” we were able to move her to a nursing facility. The facility was not set up for a young adult with this condition. Patsy would memorize the security codes and let her self out of the facility daily].

Depending on severity, a patient with impaired comportment may not be able to manage their daily activities without supervision. They may be at risk for harming themselves or being victimized because they would not be able to recognize their limitations or use proper judgment. Driving is usually unsafe for persons with this diagnosis. [Both Patsy and Michael’s driving habits changed. Michael became more aggressive and Patsy became more tentative and careless. Patsy also claimed a couple times that someone made unwanted sexual advances. Once was during a visit to Virginia. She accepted a ride with a man during one of her walks. She later told me he tried to fondle her breasts. I asked her why she rode with a man she didn’t know and she said she didn’t know, I tried to find out who it was, but she wasn't able to tell me].

Fortunately, there are steps that can be taken to provide a secure environment for the diagnosed person and obtain help for family:

Obtain a psychiatric evaluation from an individual with experience treating people with dementia. Certain medications can help with behavior problems such as agitation and hostility.
[The doctor that finally did this for us
, called my sister directly and told her to come into his office. He told her (without any family in attendance) her brain was shrinking. Imagine a Doctor sitting you down and telling you this with no family support, hard to believe. INSIST on a SPECT or PET scan of the brain, it was not until I INSISTED it be done, the real diagnosis came in. The doctors in Houston told us most doctors are not skilled at diagnosing FTD from MRI’s (which are what Michael and Patsy both previously had). They said you can tell activity, but you really have to know what to look for, whereas a SPECT or PET scan show more definitively what is going on in each area of the brain].

Share information with family and friends. This will help them better understand the patient's behavior and provide an opportunity for them to offer the diagnosed person and their family some support and respite. [Both Michael and Patsy lost many friends due to the illness. The friends just didn’t know why they had changed so much, and understandable so….the family members didn’t know either. Had we known, we certainly would have been more aggressive in getting answers and been more patient].

Encourage the person to attend an early stage support group. Even if the support group is geared toward the person with early Alzheimer's disease, much information will also be relevant to Frontal Lobe Dementia. [The doctors told us FTD patients like Michael and Patsy do not understand or comprehend what is going on..they just accept it. So not sure what a support group for them would do, other than give them a social outlet. I guess this varies due to type of dementia etc.].

Meet with an attorney or financial consultant and make sure Durable Power of Attorney forms have been completed for both health care and finances. Give copies to your doctor. An "elderlaw" attorney who is well-versed in these issues is still an appropriate choice to help you draft these documents or you may obtain the forms at many stationary stores and complete them on your own. [My sister had to be bailed out financially by our mother several times and my brother was allowing mom to pay for things where in the past (his normal behavior) would never have allowed it].

Attend a caregiver support group. Listening to others who are going through similar experiences can be very comforting. They may also aid you in developing new caregiver techniques and learn about different resources within your community. [There was no such critter for us back then, the doctors even suggested we try to get one going…but we were way too tired most days to do anything so ambitious. Now I see there are more options out there…in fact the AFTD site has a support group attached which I have been going on and can see it is a great support for people navigating their way around this challenge - http://www.ftdsupportforum.com/].

Try to remain physically and mentally healthy. Be sure to get regular health check-ups for both the diagnosed person and family. Exercise and eat nutritious meals. Build in time for things that allow you to rejuvenate. [Absolutely essential, or you’ll just go crazy. I had been working in the high tech arena from a home office….I eventually realized, it was necessary to get out of the house and get back to a job where I could socialize and have time away from FTD. When I wasn’t working, I was researching on the Internet for really long periods of time….I was learning a lot, but was also consumed with the illness. The grief from already loosing my brother and slowly loosing my sister was just too much. For the first time in my life I had to seek out a doctor’s assistance to give me DRUGS for depression. I took a medication for 9 months and it made a huge difference for me. Friends that understand can give you the respite you need probably better than anything].

Obtain a driving evaluation: Contact your local Alzheimer's Association for the driving evaluation program near you. [I can see this would be hard to deal with. We finally took the car away from my sister, she didn’t seem to mind. I can see this would be a case by case basis].

1 comment:

Grayson's Mom said...

I can't believe all the information you have on the site. Keep it up! Highly interesting and helpful.