Need to treat person with respect and who they are. Fight stigma. Participate in any research studies available (ex: UW) Need to continue doing what we are doing to fight the stigma All of the studies involved in are paid for on her own. We need help providing financial support to those involved in studies. Q & A for panelists Q: What specific kinds of exercise programs are available and may be supported? Does routine exercise help muscle memory? Alzheimer’s association has zoo walk program and UW with NIH funding has RDAD funding to allow for exercise program (extremely important to continue funding and look further into benefits of exercise). Any exercise program that we can be involved in is paramount. Anything we can do to slow progression. Dance music programs; yoga programs. Q: Where would you most prefer to get information after diagnosis, what would be the best channels? (PCP, neurologist, website, etc.) PCP if they were given the education and training on how to give this information. Don’t believe that PCPs will ever give the appropriate information. Hope that PCPs will refer to appropriate neurologist. Hope that the PCP could be the person to give the diagnosis. Someone who can be compassionate and kind. Would hope that the PCP could be trained to this person. Q: Can you touch more on the negativity of the disease. What were your frustrations with PCP and being accused of things? Granted social security early. Think it boils down to fear and having people look at her living a good life and not understanding The variability and uncertainty after having the diagnosis. We need help making sure that everyone is receiving the follow thorough and automatically receiving appropriate referrals in hopes that we can get less variable and more accurate diagnosis. Then the PCP can continue the follow-up and make sure the process is streamline and complete. Genetic testing was very costly and had to pay a great amount of money for early testing. PET scan was what gave definitive diagnosis & was extremely costly. Working Lunch: Table Family Caregiver: When husband was diagnosed, they got sent to the Discussions and Report-Outs neuropsych who made the diagnosis. What they got was “I’m sorry this is your diagnosis,” and then nothing. There weren’t referrals or “What you
Need to treat person with respect and who they are. Fight stigma. Participate in any research studies available (ex: UW) Need to continue doing what we are doing to fight the stigma All of the studies involved in are paid for on her own. We need help providing financial support to those involved in studies. Q & A for panelists Q: What specific kinds of exercise programs are available and may be supported? Does routine exercise help muscle memory? Alzheimer’s association has zoo walk program and UW with NIH funding has RDAD funding to allow for exercise program (extremely important to continue funding and look further into benefits of exercise). Any exercise program that we can be involved in is paramount. Anything we can do to slow progression. Dance music programs; yoga programs. Q: Where would you most prefer to get information after diagnosis, what would be the best channels? (PCP, neurologist, website, etc.) PCP if they were given the education and training on how to give this information. Don’t believe that PCPs will ever give the appropriate information. Hope that PCPs will refer to appropriate neurologist. Hope that the PCP could be the person to give the diagnosis. Someone who can be compassionate and kind. Would hope that the PCP could be trained to this person. Q: Can you touch more on the negativity of the disease. What were your frustrations with PCP and being accused of things? Granted social security early. Think it boils down to fear and having people look at her living a good life and not understanding The variability and uncertainty after having the diagnosis. We need help making sure that everyone is receiving the follow thorough and automatically receiving appropriate referrals in hopes that we can get less variable and more accurate diagnosis. Then the PCP can continue the follow-up and make sure the process is streamline and complete. Genetic testing was very costly and had to pay a great amount of money for early testing. PET scan was what gave definitive diagnosis & was extremely costly. Working Lunch: Table Discussions and Report-Outs Family Caregiver: When husband was diagnosed, they got sent to the neuropsych who made the diagnosis. What they got was “I’m sorry this is your diagnosis,” and then nothing. There weren’t referrals or “What you
ADWG%20Meeting%20Minutes%20January%207%202015.docx