Developing Dementia-Friendly Communities and Dementia-Capable Professionals

(Note: The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 36, Issue 3.)

A Week of Intensive Training

The first week in February 2015, ABA Commission on Law and Aging Senior Attorney David Godfrey, along with Dr. Dan Marson of the University of Alabama at Birmingham School of Medicine, and Hawaii-based Title III B legal services providers co-presented a series of five workshops on developing dementia-capable legal and aging services professionals in Hawaii. Professor James H. Pietsch of the University of Hawaii William S. Richardson School of Law prepared Hawaii specific material on planning for incapacity and elder abuse. This training was a unique collaboration between the Hawaii Executive Office on Aging, the Hawaii State Bar Association, and the National Legal Resource Center National Legal Training Project hosted by the National Consumer Law Center. To assure that attorneys in all four counties in Hawaii had equal access to the training, a full-day program was presented four times in four locations to audiences ranging in number from 20 to 120.

As part of a national plan on Alzheimer’s, the Administration for Community Living has asked states to develop plans for dementia-friendly communities (learn more at: http://www.alzheimers.gov/alzheimers.html and http://aspe.hhs.gov/daltcp/napa/NatlPlan2013.shtml). These communities are prepared to help every citizen age in place with networks of trained dementia-capable staff in the public and private sector and accommodations in place for persons across a broad spectrum of capacity. In the process of developing a plan for being dementia ready, Hawaii recognized the need to train legal professionals and aging services professionals on legal issues relating to dementia and this unique training series was developed. Local bar associations including the Kauai Bar Association, the Maui County Bar Association, and the North and South Island of Hawaii Bar Associations partnered to host the events on their respective islands and outreach was done to local attorneys, other legal professionals, and aging services professionals.

The training began with an overview of a dementia-friendly community and a dementia-capable professional. Dr. Dan Marson then talked about normal cognitive aging, dementia, and understanding capacity. Then David Godfrey provided an hour focused on legal ethics when working with clients with limited or diminished capacity. There was also emphasis on balancing the empowerment individuals with protecting them from abuse. Attorneys from local legal aid and Older Americans Act Title IIIB legal services providers spoke about planning tools to be used for incapacity under Hawaii law. Legal professionals were also provided with practical case studies on planning for incapacity.

What is a Dementia-Ready Community?

To get a feeling for what a dementia-ready community looks like, let’s look at the fictional tale of Bob and Alice:

Bob has lived in Middleville for the past 75 years. He was born there, went to school there, and except for four years away in the Army has always called Middleville home. Recently, Bob got lost in the parking lot at Mall-Mart. He drove around the lot for a few minutes and couldn’t figure out which exit to take out of the parking lot. The signs all had route numbers on them and not the street names he was familiar with.

The security staff at the shopping center was concerned about his erratic driving and called the local police. The police stopped Bob, and his reaction was one of anger, followed by breaking down in tears. The police tried doing a field sobriety test and Bob couldn’t follow directions. A breathalyzer test showed no alcohol. Suspecting possible drug use, the police took him the local doctor to have blood drawn. Bob was booked into the local jail and later that afternoon the judge appointed an attorney to represent him.

The attorney interviewed Bob and couldn’t make sense of what he was saying. He kept talking about his time in the army and needing to be at the old high school, a school that was torn down 30 years ago.

Bob has dementia and his town is not prepared to help him live in the community he has called home for a lifetime; the professionals he encountered have not been trained to recognize and accommodate persons with dementia.

Alice has lived in the city of Futureville all of her 79 years except for four years away at the state university where earned a teaching degree. She taught in the local school for over 40 years. Alice recently got lost in the local Mall-Mart store. She was looking for the garden department and could not remember where it was located. When she finally saw the big sign that said “Garden Center,” it was the illustration of flowers in bloom that she recognized, not the words. She followed the arrows, finding her way to the garden center.

Alice wandered around the garden department for a few minutes looking truly lost. Store security paged Mindy, a trained staffer to help Alice. Mindy recognized Alice from the local Alzheimer’s support group and asked if she could help. Alice said, “I am looking for some… Oh, I can’t remember the name, but it is time to plant them out front along the walk.” The staffer asked if she was looking for geraniums or petunias. Alice said: “Petunias. The purple ones have always been my favorite.”

After Alice made her selection, Mindy walked with her to check out and helped Alice count out exact change. Mindy said to the store manager, "let me make sure Alice gets on the right bus and the driver knows what stop she needs," and walked with her out front. Alice showed the driver her purple bus pass, with her stop and address on the back of it. The driver knew exactly what to do when he saw the purple bus pass and assured Alice that she would make it home safely—he’d stop in front of her house only a short distance out of his way.

Later that day, the Meals on Wheels driver stopped by with Alice’s twice-weekly delivery and while checking to see that she had eaten the meals from the previous deliveries asked her if she was ready for her appointment with the legal aid attorney the next day. Alice asked the Meals on Wheels driver to print out the address so she could give it to the bus driver in the morning. Later that day, Alice’s social worker called and said “I see from your GPS records that you have been to Mall-Mart today, I bet you were buying flowers for your garden. I will call in the morning to remind you which bus to take your appointment.”

Alice has dementia and lives in a dementia-friendly community.

With a rapidly growing population of older Americans, the United States needs to be prepared for unprecedented numbers of persons with dementia. To focus on this developing issue, the Administration for Community Living encouraged state and local governments to develop plans for dementia-friendly communities. It is estimated that the number of persons with dementia living in the United States will grow from about 7-million persons to over 14-million the next 30 years. Dementia-friendly communities include dementia capable professionals.

Dementia-friendly communities have in place plans to enable persons with dementia to enjoy high quality of life, with maximum autonomy for as long as possible and to live in a safe environment. Dementia-friendly communities require the active involvement of the entire community. Dementia is not just a health care issue, or a social issue, or a legal issue--it is a community issue. Both the public and private sectors need to be involved and trained to assist and protect adults with dementia. In the example above, Alice was helped by illustrative signs, specially trained store staff, a transit system with specially trained staff and programs, home delivered meals, and a social worker who is watching over her, but not trying to micromanage her.

Dementia-friendly communities take work to develop, but pay the dividend of members of our community being able to age with dignity in the homes, neighborhoods and, communities they love.

Is Futureville possible? Yes, if we work together to develop dementia-friendly communities and dementia-capable professionals; Middleville is hopefully fading fast from the American landscape.

Training Material Highligths

Included below are highlights from the presentations given during the recent Hawaii training sessions.

Full PDF versions of the PowerPoint slides presented at the training sessions are available for download here. 

A Dementia-Capable Legal Professional

• Understands the fundamentals and common forms of dementia
  
• Understands the spectrum of capacity
  
• Has the skills to do basic screening for capacity
  
• Assures that the client understands the legal options and the implication of the choices being made before moving forward
  
• Knows the legal issues and risks faced by persons with dementia and their loved ones
  
• Focuses on empowering the person with dementia and their families, while still protecting from abuse
  
• Is aware of the ethical issues of representing a client with diminished capacity, multi party representation, conflicts, confidentiality, and competence
  
• Reassess capacity on an ongoing basis
  
• Is skilled in communication and empowerment tools
  
• Is well-connected with programs and services
  
• Provides referrals to community-based services that are dementia-capable
  
• Is sensitive to cultural differences when working with persons with dementia and their families
  

Empowering a Person with Diminished Capacity

• Assume that the person can, not that they cannot
  
• Live in the moment
  
• Talk with the person
  
• Honor long term patterns, values, and goals
  
• Understand culture
  
• Offer choices and let the person make choices on non-critical issues – even if it is obvious they are making bad choices
  
• Redirect communications
  
  • Word finding
    
  • Offer a list of options
    
  • Look for meaning in the context
    
  • It will come to you in a minute
    
  • We will come back to that later
    
  • It wasn’t that important
    
• Understand the person’s reality
  
  • The facts may not overcome perception
    
  • Logic, reasoning, and facts may only frustrate
    
  • Redirect: "not now," "we will (do/talk about) this later"
    
• Money
  
  • Discuss finances
    
  • Have the person sign checks as long as possible
    
  • Make sure the person has access to spending money
    
  • Ask what they want, and do your best to honor their wishes 
    

Webinar Resources

The Commission on Law and Aging is committed to the Administration for Community Living’s effort to develop dementia-friendly communities and dementia capable professionals. In 2012, the Commission helped present a series of webinars with ACL.

The four programs were:

• For Legal Professionals
  Working with People with Dementia and Assessing Client Capacity
  • Webinar (PPT, 0.3MB)
  • Audio (WAV, 46.3MB)
  • Handout: Attorney Assessment Worksheet (PDF, pp. 23–26)
  • Handout: Model Rule 1.14 (PDF, 39KB)
• For Legal Professionals
  Advance Health Care and Financial Planning for Persons with Alzheimer’s
  • Webinar (PPT)
  • Audio (WAV, 4.0MB)
• For Aging Professionals
  Critical Legal Issues in Alzheimer’s
  • Webinar (PPT)
  • Audio (WAV, 4.0MB)
• For Legal Professionals
  Elder Abuse, Neglect and Exploitation and Clients with Dementia
  • Webinar (PPT, 2.2 MB)
  • Audio (WMV)