14/09/2011

A Life Worth Living (or Who Can Argue with That?)

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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.

 

 

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Cláudia's picture Cláudia wrote:

Muitos parabéns pela vossa iniciativa! Vão certamente ajudar muitas pessoas!

Fanelli's picture Fanelli wrote:

Great post and great initiative!.

joel ménard's picture joel ménard wrote:

Well written!

Maggie Calkins's picture Maggie Calkins wrote:

Non-Pharmacologic Interventions – why are we defining it in terms of what it’s not?

Those of us involved in psycho-social-enviro therapies have struggled to have the therapeutic value of our work recognized as being of equal value as the medications that cost our health care systems billions of dollars. I remember a presentation several years ago by Dr. Cornelia Beck, where she compared the effect size—in well controlled RCTs (randomized control trials)—of psycho-social and environmental interventions versus pharmacologic treatments. Again and again, the psychos-social-environmental therapies had larger effect size and longer lasting impacts than the pharmacologic treatments.
So with this kind of evidence, why do we still struggle to justify the importance of our work? Why do we fall back on defining ourselves (at least for this conference) in terms of what we are not? We can do better than describing what we do as non-pharmacologic treatment. After all, our work has a greater impact on the quality of life of individuals with dementia than what medications can currently offer.
Even at this conference, which has two major tracks—one on Basic and Clinical Research and one on Health and Social Care Research—both of the Plenary/Keynote Addresses are devoted to basic cellular research. Why? I don’t mean to criticize the conference planners, but this is a prime example of the lack of respect given to psycho-social-enviro therapies within the wider academic community.
Wisdem can and will be the catalyst that will propel psycho-social-enviro therapies to the forefront of everyone’s consciousness. Be a part of that movement by getting engaged. Share your knowledge of what works. Provide links to your favorite resources. I’ll start. On my website, www.IDEASInstitute.org, there is a link where you can search our library database. Here you can find references and abstracts from over 5,000 references of both research and non-research-based resources. If you are interested in design issue, you should also check out http://www4.uwm.edu/dementiadesigninfo/. This website is a resource for designers, providers, and others to inform the creation of supportive environments for people with dementia. Dementia Design Info summarizes the environment-aging literature, puts it into easy to understand terms, and provides practical design suggestions. There are a number of excellent white papers available for free download.
I invite you to join the movement and help everyone understand the importance of psycho-social-enviro therapies for individuals and families living with dementia.

Maggie Calkins's picture Maggie Calkins wrote:

Richard Taylor’s comments this morning at the Alzheimer’s 2011 International Conference speak to prejudices that so many of us still carry about the person-hood of individuals with dementia. At the time of diagnosis, it is often presented to the family as though it were a death knell. The Long Goodbye, Losing My Mind, Life Without Meaning, How to plan to die – These are all examples of viewing the diagnosis of dementia as the beginning of the end.
It isn’t. If we—spouses, family, caregivers, professionals, society as a whole—diminish the value of these individuals, we are guilty of depriving them of their basic human rights. Richard said that when someone undergoes physical or occupational therapy, if we want to judge its efficacy, we ask the person. But with someone with dementia “we” (often the professional caregiving community) tend to decide whether an intervention is working. We don’t ask them. We tell them- or, often, rather tell their family.
THIS IS WRONG. The person with cognitive changes knows best what works. All we have to do is ask. If he or she doesn’t use words to tell us, then we need to learn to communicate via their behavior and other expressions of emotion. Everyone knows the difference between a happy or an unhappy infant or child- by facial, vocal and behavioral signs. We can use the same perceptions to read the affective state of individuals with even late-stage dementia. A smile is a smile, regardless of age.
We need to stop dismissing the individual with dementia as automatically “incapable” of participating in life, care and decision-making. We need to follow the philisophy of “Nothing About Me Without Me”

Veronica Franklin Gould's picture Veronica Franklin Gould wrote:

Congratulations to wisdem! We at Arts 4 Dementia look forward to sharing information with you, as to how engaging in arts activities is inspiring people in the early stages of dementia, elevating them above their symptoms. Seeing people drawing on maximum brain function to recall lyrics, then capture and sing them is exciting for them, their partners and for us; as through photographs they themselves bring evidence that will help combat stigma.

Veronica Franklin Gould, Arts 4 Dementia, www.arts4dementia.org.uk

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