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
Supports Chris Henderson What happens when a person loses cognitive capacity and doesn’t have advance planning documents in place? How are important decisions made when a person is not capable of making those decisions and has not communicated their wishes in advance? What are the key things a person with AD/dementia should consider in terms of advance planning? What are the legal tools available for advance planning? And barriers to their use? Vocabulary Power of Attorney – private document to manage decisions. Guardianship – court appointed relationship to manage decisions; someone’s rights are being taken away and given to a guardian. Advance directive/advance medical directive/living will – similar to power of attorney (private document). POSLT – Physican’s order on life sustaining treatment. Trust – private agreement to manage assets. Legal tools Surrogate decision maker/conferred authority (guardianship, POA). Conferred authority – make decisions on behalf of another adult. Granted by adult, courts or operation of law. POA – principal does not lose the ability to make decisions; principal must have capacity to sign the POA; decisions of the principal ‘trump’; revocable instrument. Directions to provider(Advance Directive, POLST). Voluntarily transferring control of assets (Trusts). Conflicts & problems with no tools or improper use of tools Lack of planning – can make it impossible to use the tools that require participation of incapacitated person; difficulty acting quickly; addressing ieeues in crisis increases probability of conflict. Multiple plans – instigated by different children. Incomplete plans. Too much authority invested in too few people. Barriers to proper use of tools Lack of urgency. Expense. Lack of knowledge. Lack of someone to name as authority. Unwillingness to discuss end of life. Overcoming barriers Q: Is an attorney under a duty not to assist if they question whether the principal has capacity? A: Affirmative duty is not completely clear. They have a duty not to do this if it’s clear or they definitely know there is a lack of capacity. Q: Does the attorney ask about prior documents? A: Yes. Q: Difference between elder law and estate planning attorneys? A: No state certification for elder law attorneys in WA; there is a national academy of elder law attorneys and WA attorneys can get certification that way. [Table discussion on how to get people to do advance planning]