A year of exploration

The past year 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 the 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 The Patterson Foundation's more than 50 meetings and discussions, themes have emerged:

• 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.

The Patterson Foundation chose this initiative to honor Dorothy Patterson, who had dementia.  The objective is to determine if the foundation can develop a plan for transforming the dementia continuum of care and to do so in a way that is collaborative, financially sustainable and fills gaps.

The Patterson Foundation has received a number of requests for funding, and each request has been legitimate and not without merit.  However, when tested against the foundation's requirements of collaboration, financial sustainability and filling a gap, the requests have fallen short.

For many, this is a new way of approaching a philanthropic solution. The Patterson Foundation has an obligation and responsibility to create a new model, which leads to positive change.

Where will the foundation go from here?

The Patterson Foundation's interests are along the dementia continuum of care - the area between early or pre-diagnosis until the time of institutionalization. Through this initiative, the foundation is interested in tools, approaches, and more that can put patients and caregivers in control of dementia versus dementia being in control of them.

How will we move forward in our work?

• Continue to explore quality of life during this time
• Connect with more experts in the dementia field
• Search for opportunities to bring organizations and people together to develop a new approach

Look at technology platforms, tools and resources that exist or need to be created to improve quality of life of dementia patients and caregivers.