Thinking About Navigation Tools for Individuals, Families and Caregivers with Questions about Alzheimer's, Dementia or Related Disorders

Having returned this month to Pennsylvania following a wonderful experience as a visiting Fulbright Scholar at the University of Ottawa in Canada, I'm digging into the next part of my ongoing research. I have a lot to think about, having been inspired by more than 35 interviews or presentations I observed during my four months in Canada.

Law professors, especially those involved in public outreach projects, tend to attract "questions" from the public.  Most of the callers who reach out to me stop short of asking for legal advice. In fact, I've realized that most of the inquiries I receive are from people asking, "What do I do next?"  They are seeking practical guidance. 

I actually had more time than usual to listen to some of these informal inquiries while in Canada.  I'm always careful to clarify that I cannot and do not give legal advice when contacted in this manner.  At the same time, I usually learn that the questions are often more of the "how to do I find the right advice and is it even legal advice I need?" variety.  Examples:

• One call was from a husband and wife who were seeking to understand and manage the financial consequences of a senior living contract they had signed.  Both halves of the couple had been diagnosed before signing the contract with "early" stages of dementia. As it turned out, the wife had no true understanding of the contract and was refusing to "go."  This call involved multiple states, and "choice of law" questions.
• One call was from an attorney who was asked by neighbors and family members of an older person to assist an older person who seemed to be struggling financially, possibly because of third-party exploitation.  The facts were complicated, but the attorney was calling because the living situaton, though far from ideal, might be with the "consent" of the individual. 
• One call came after a Fulbright presentation I gave at the University of Ottawa where I explored the question of "Protection versus Autonomy" when facing concerns for older people -- or sometimes involving similar questions from adults who are "younger." The caller this time was concerned that clear wishes of an adult family member regarding "end of life" were being ignored by an appointed guardian.   

From my earlier work as the founder of an Elder Protection Clinic for Penn State Dickinson Law,  I recalled that we would often begin any responses to such questions from actual clients in a "step-by-step" fashion, such as:

A. Is there a threshold need for a "safer" setting for the person under consideration?  If so, what options exist?

B. Is there the potential that that impaired cognition is a reason for the person to be unable or unwilling to take self-protective actions?  If so, is there a need and an option for the person's capacity to be evaluated?

C. If a longer term plan is needed, are there "legal" components to the plan, and do those legal components benefit from medical or social supports?  If so, what accessble options exist for the person in need?  

When considering these calls while I was in Canada, I realized I was already seeing a new generation of relevant navigation tools under development in Ontario. For example, I learned about "apps" that provided navigation suggestions for individuals with heart conditions, or cancer, or Parkinson's Disease. The experts making the presentations were deeply impressive.  Many of these "path-finding" apps were directly tied to answers supported by Artificial Intelligence (AI). 

On the other hand, my observation is that most of these "apps" were "just" medical, or "just" social services in nature.  Would it be possible to design a broader-based "App" for older individuals, their families and their caregivers that can offer a wider array of possible approaches, including law-related options?  Jokingly, I ask myself, can AI help me "clone" myself and clone other people who serve as navigator tools in age-related fact patterns? Can an individual U.S. state -- Pennsylvania? -- be a leader in creating a jurisdiction-specific format?  

That's part of what I'm thinking about now, as I continue my Fulbright Fellowship research, with the inspiring examples provided in Canada, and especially with examples coming directly via my hosts at the uOttawa Center for Health Law, Policy and Ethics. Thank you, Director Vanessa Gruben and Associate Director Dina Idriss-Wheeler! 

Feel free to send me your own thoughts (probably best to do so via email as the "comment" function on this website is quirky).