Living well with any chronic, progressive condition is difficult; yet to live well with one that carries with it a stigma and so many misconceptions creates a bigger challenge still. How can we, family and care partners, support the people we know living with dementia and help them to live well and thrive? Unfortunately, it isn't as simple as one answer, one way, or one lifestyle. To start, we have to think about what facets of life are important to living well. In my opinion, there are several common indicators that define a life well lived.  

• Is there satisfaction in relationships with those around us?
• Do we have the opportunity to engage in our own personal interests and activities?
• Is there an active belief that life is worth living? Things we hold to, for example, that are valuable and important to us. These can be appreciated only by the perceiver, or might even be a shared value with those who are important to us.
• Do we dream and create? We need to imagine the possibilities, plan, and then reflect.
• Are we experiencing joy every day? Joy can be found in big or small things alike, or simply to be a part of a moment. We need these moments each day.
• Is our life making a difference to someone?

Now, let's consider the systems and language generally used to describe and talk about dementia. The most commonly used system is called the Global Deterioration Scale. Developed by Dr. Barry Reisberg (NYU School of Medicine), this scale focuses on difficulties, inabilities, and uses terms such as mild, moderate, moderately severe, severe, and profound losses. Its descriptors are primarily based on progression and loss patterns specific to Alzheimer's; not changes typically found in other dementias such as Lewy Body, Fronto-Temporal, or Vascular dementia. There are other existing scales but, similarly they also emphasize loss and inability.

How can living well be an expectation for someone who is being defined by words and scales (sometimes even inaccurate ones) describing what he or she can no longer do in this life?

I have opted to see things a little differently in my efforts to help. Instead of looking back on what a person was capable of, and lamenting on the losses in their life, I see great value in shifting the focus to what is possible now. Ask yourself if you have ever considered what a person affected by dementia is capable of at any given moment. The truth is all people change. Those living with dementia, however, are typically changing much more dramatically and more often. And yes, this can be surprising so there is even more need in these circumstance to place your focus on capabilities.

How is the person attempting to relate or connect with you or others? What are they interested in now? What skills and talents are available to them today? Which communication cues and prompts are helpful to them and working at the moment? What environmental supports or activities are making a positive and beneficial difference to those in your care?  This is the approach I take, to ensure that someone is living well when experiencing brain change and I am committed to sharing my vision with others.

I created the Living GEMS approach to help us see a person with rapidly changing abilities as precious and unique, like a gemstone. Envision your hands filled with sapphires, diamonds, emeralds, ambers, rubies, and pearls; they are dramatically different from one another, but are also all valuable and beautiful. Each individual gem is formed on its own and will never be exactly like any other; however, each group of gems have similar characteristics and will require the right setting and care to shine.This is also true for anyone living with brain change. Instead of focusing on who a person used to be, we need to observe who they are now so we can change alongside them and learn how to help them shine. This shift in approach has been vital in my efforts to truly support and help someone live life fully and well under any changing circumstance.

The importance of providing an ability-based approach of support and care cannot be overstated. The way you think of and respond to the changing journey is critical to supporting any life lived with a form of dementia. It will reflect your acceptance of change, and also a refusal to accept that change can define the value of a person's life. The GEMS™ approach defines that a person living with brain change is different from who they once were, but always valuable and living. Transitioning from one Gem™ ability to another does not represent a loss in their value; instead it represents a new and different opportunity to shine.

It is encouraging to look around the world at what others are doing to help bring about awareness and knowledge related to living well with dementia. We are seeing progress but, in my opinion, we still have a long way to go. Conversations and dialogues about dementia should no longer begin and end with how to find a cure. To me, it starts with listening and valuing those who are living with dementia and opening our hearts and minds to new ideas that will encourage and help them shine.

We would like to celebrate and dedicate this month's Journal to those advocates and individuals who are making amazing strides choosing to do it differently, and LIVE WELL WITH DEMENTIA.