The Patterson Foundation Dementia Initiative Update

As promised last January, 2010 has been a year of “exploration” for The Patterson Foundation's Debilitating Diseases: Dementia initiative.

The journey began with a basic understanding of dementia, an appreciation for the statistics showing that dementia cases are going to increase dramatically in the ensuing years, and knowledge that our current system for diagnosing, treating, managing, educating, and discussing dementia is inadequate.

Throughout the past 10 months, we have been fortunate to speak with many of the best and brightest in the “dementia field” and to those impacted by dementia. This issue is not unique to Florida or even the United States. The reality is that as people live longer, the likelihood of dementia becoming a “crisis-level” problem transcends all states, regions and countries.

Throughout our 50+ meetings and discussions, we have identified a few consistent themes:

• Acknowledgment that the increasing prevalence of dementia is going to be a challenge for communities, individuals, families, providers and caregivers
• Our healthcare system is not currently structured to properly manage dementia and/or handle the number of dementia cases
• Communities are ill-prepared to handle the increase in the number of people who will have dementia
• The approach to dementia management and care is fragmented with seemingly limited interest in collaborating with other entities, groups, experts
• Each local community is different, and ultimately, patients and caregivers are impacted by their awareness of, and access to, local resources
• “What do I do now?” is the one consistent question asked by patients and caregivers at the time of diagnosis and varying times throughout the progression of the disorder.

We undertook this initiative because Dorothy Patterson had dementia.  Our objective is to determine if we can develop a plan for transforming the dementia continuum of care and to do so in a partnership/collaborative, financially sustainable and “gap filling” way. In other words, anything in which we get involved ought to leverage the resources of multiple entities/people, be a model which has long-term financial viability and works in areas where other foundations or private enterprise will not or cannot.

We have had a number of requests for funding, and each request has been legitimate and not without merit.  However, when tested against the TPF requirements of collaboration, financial sustainability and filling a gap, the requests have fallen short.  This has been challenging because we know there is a need for help, however, we are committed to making sure any resources (money, personnel, etc.) spent result in viable, lasting change. For many, this is a new way of approaching a philanthropic solution. We recognize this and believe we have the obligation and responsibility to create a new model which leads to positive change.

So where are we?

Our interest along the dementia continuum of care is the area between early or pre-diagnosis until the time of institutionalization.  We are interested in tools, approaches, etc. which can put patients and caregivers in control of dementia versus dementia being in control of them. We are interested in the quality of life during this time.  So, we continue to explore and speak to people in this space.  We continue to challenge and ask for new ideas and approaches.  We continue to search for opportunities to bring organizations and people together to develop a new approach.

We find the following website, www.dementiaweb.org.uk, interesting and wonder if it should be created for communities in this country? We wonder if brain health might be an appropriate focus of ours?  We wonder what tools and resources exist or need to be created to improve the quality of life of patients and caregivers?

We welcome input from experts….please give us your guidance.