A Life Worth Living (or Who Can Argue with That?)
The UK, France and several other countries have National Dementia Strategies—concerted country-wide efforts to make sure their citizens with dementia have information, access to services and that there is money allocated to research for a cure or symptom-reducing treatment. The United States Congress has just passed and President Obama has just signed National Alzheimer’s Project Act aimed at the US developing such a strategy. Information, access and research! Who can argue with that?
No one. But there are some things missing from this picture.
First, dementia is seen almost universally as a terrible, negative downwardly-spiraling disease that everyone should be afraid of and avoid at all costs. With no effective treatment available today, this way of seeing dementia puts those with dementia—upwards of 5 million in Europe, the US and China, and another 20 million world-wide—in a no-win catch-22 situation. The millions of people living through the first decade of dementia and beyond who want to remain active and engaged in life, to have a good life, have nowhere to turn. The stigma surrounding dementia makes it almost impossible for them to have any hope at all.
No one embraces a dementia diagnosis. Everyone needs hope. The hope that even with such a diagnosis, they will be able to remain full citizens and that society will accept them. The first thing, therefore, that is missing from this picture is the positive message: If we work together and truly support each other, those with dementia and their care partners can enjoy the best life possible.
Second, there is little information available about what people living with dementia can do to remain active and engaged—how they can truly have quality of life. Sharing information is positive or negative depending on having the right information to share. What creative approaches are there to personal engagement? What services are available to keep those living with dementia part of society—engaged in the lives they have known since childhood? What urban settings are designed to keep these people as safe as possible when they go out to shop? How might cultural institutions such as theatres and museums do to welcome people with dementia as participants? What can be done in public places like schools, libraries and parks to give people with dementia a life worth living? This is the type of information that needs to be shared.
Third, dementia knows no national boundaries. Dementia is a global problem requiring a global strategy. As long as each national strategy mirrors what other countries are doing—information, access to services, and primarily pharmacological research—each is duplicating the work of the other. In the realm of nonpharmacological interventions for dementia—the focus of this website—global sharing is essential. The only way to create the necessary critical mass of innovation, creativity and good will is to share globally. Innovations in a Greek day centre, design guidelines in Australia, museum access programs and intergenerational schools in the US, technologies that Mexican researchers are exploring—all these know no boundaries and the more they are shared, the more people living with dementia can have a life worth living.
And for all of this we need more research—to fine tune and learn from these nonpharmacological interventions. What makes the Thessaloniki day centre as effective as it is? How does the theatre program in Madison, Wisconsin engage those with dementia? What environmental design principles are most transferable from one setting and one culture to another? What works best? We need research methodologies suited to answering these questions.
Solving these problems of information, access and research—refocusing them onto positive efforts and a life worth living—is what we can do to help most. wisdem is going to do its utmost to be a platform for such sharing. wisdem’s Global Scientific Committee is dedicated to sharing evidence-based approaches and methodologies. wisdem’s global reach—building on new social media and internet connectivity—will be put to the service of all countries and all peoples, reflecting the truly global nature of living with dementia.
What can you do? Take part in this information sharing. Tell us about what you have learned, what works for you? Advocate locally, nationally and through wisdem globally to increase research into nonpharmacological approaches and interventions—so that together we can create the global critical mass necessary to truly give those with dementia and their care partners a life worth living.