It is estimated that the number of people with dementia living in the United States will grow from about 7 million to more than 14 million over the next 30 years. Dementia-ready or dementia-friendly communities are communities 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 people across a broad spectrum of capacity. The goal of developing a dementia-friendly community is to create a living environment that empowers adults with changes in memory or cognition to live in the setting they most desire. Dementia is not just: a health care issue, a caregiver issue, a long term care issue, a legal issue, a housing issue, a social issue, a neighborhood issue, a transportation issue, a community services issue, a nutrition issue, or a family issue. It is all of these things; every part of the community must work together.
Developing a dementia-friendly community starts with bringing community partners and service providers to the table. All participants and the community at large need to develop an awareness and understanding of brain aging and changes in memory and cognition and how these changes impact adults. To be effective, this needs to reach every part of the community that a person with dementia may encounter. Dementia is different than other variations in ability or capacity because dementia gradually changes the ability of an adult to remember information and make decisions; adults gradually need more and more help to remain safe and independent.
A second step is surveying community partners to understand what programs and services are available and what needs to be developed to help people with dementia and their loved ones. Partners should develop a commitment to bridge the gaps that exist between current services and those needed to make the community truly dementia-friendly.
A dementia-friendly community helps persons with changes in memory and cognition make choices by gently guiding, while honoring the choices of the person to the maximum extent possible. This is the concept of supported decision-making. We all do this: we don’t make medical choices without asking medical professionals for guidance. As lawyers, we hope that our clients don’t make legal decisions without asking for advice. In the same way, a person with dementia is helped and guided in making decisions by a trusted circle of supportive advisors, with the core decisions being made by the person as long as possible.
There is a major role for lawyers in developing supported decision-making for people who are experiencing changes in memory and cognition. It is one thing for a person to surround themselves with a circle of advisors, family, and friends who will help them make choices as dementia progresses, and yet another for that circle of advisors to be legally empowered to carry out those decisions. Planning ahead should include advance healthcare directives, powers of attorney, trusts and successor trustees, and authorized signers on bank and brokerage accounts. Dementia commonly progresses to the point that the person becomes unable to communicate even the most basic of choices. Careful planning allows the circle of advisors and supporters to continue to make decisions based on the beliefs and values of the person and to have the legal authority to carry out those decisions. The impact of dementia runs a huge spectrum from mild cognitive impairment to late-stage dementia, when a person is totally unable to communicate. Along this spectrum, the wishes of the person should always be a factor in making decisions.
Frequently, the first signs of changes in memory and cognition are changes in handling money. People who have always paid bills on time start to pay bills late or not at all; people who have been generous become miserly; people who have carefully saved start to give away money beyond what they can afford. Merchants, utilities, and bankers are often the first to notice changes in the behavior of a customer. Another common symptom is changes in ability to keep track of dates and times. Customers who start missing appointments without explanation or who are confused about days and dates may be experiencing changes in mind and memory. Early detection can be a key to better health care and to more effective planning for changes in memory and cognition. In a dementia-friendly community, front-line staff is trained to notice the signs of change, to guide the person with simple accommodations, and to suggest other programs and services that can help.
There are national efforts under way to encourage development of dementia-friendly communities. The United States Department of Health and Human Services – Administration for Community Living (ACL) has issued guidance and asked states to create plans for dementia readiness. The ABA Commission on Law and Aging presented training on legal issues and elder abuse as part of this effort. Resources on this effort can be found at www.acl.gov/Get_Help/BrainHealth/Index.aspx. A spinoff from this is the formation of a collaboration of more than 35 national organizations on a project known as Dementia Friendly America (DFA). The ABA Commission on Law and Aging participates in the DFA effort. DFA has created a series of toolkits and resources to help communities assess and improve dementia friendliness. DFA staff and volunteers are also available to mentor community groups involved in these efforts. This targeted effort is rapidly expanding – you can find more information at www.dfamerica.org.
So what would a dementia-friendly community look like? Let me illustrate with the fictional tale of Alice.
Alice recently got lost in her neighborhood Mall-Mart. She was in automotive and was looking for the garden center. She saw a sign that said “Garden Center” and while the words didn’t register, the illustration of blooming flowers did, and she followed the arrows on the sign. 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.” The staffer asked if she was looking for pansies 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 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.
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 delivery, asked her if she was ready for her appointment with her 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.
Dementia-friendly communities have in place plans to enable people with dementia to enjoy high quality of life, with maximum autonomy for as long as possible and in a safe environment. Dementia-friendly communities require the active involvement of the entire community. Both the public and private sectors need to be involved and trained to assist and protect adults with dementia. In the example above, Alice is 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. Her support circle is aware of her calendar and helps her go where she needs to be when she needs to do so. By tracking the GPS signal from her phone, others are able to ensure she finds her way home. The attorney will help assure that she has plans in place for additional assistance when she needs it. 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 know as home.