November 2018  

Advocating for an Early Diagnosis of Dementia

 

Every day we work with families impacted by dementia—sons looking for solutions for their moms that are wandering down the street, daughters worried about their dads driving, wives wondering how they can continue to care for their husbands at home while staying safe, and husbands trying to figure out how to find and pay for good care for their wives. The majority of these clients have one major thing in common: they have contacted us in a crisis, years after initially being diagnosed with dementia.

 

Crisis Intervention

Dementia is an awful disease. We watched my mother-in-law live with it for years (you can read more about her by clicking here) and have worked with hundreds of clients diagnosed with dementia.

 

An estimated 135 million people worldwide will have dementia by 2050. In 2010 the global cost of dementia care was estimated at $604 billion and estimated to increase to $1 trillion by 2030. Dementia is one of the largest causes of dependence and disability. An estimated 5.7 million Americans of all ages are currently living with Alzheimer’s dementia. And every 65 seconds, someone in the US is diagnosed with dementia. It is unlikely that any person in the US is untouched by dementia.

 

It never stops being shocking and sad to witness the loss, stress, and heartache this disease causes.  And with no effective intervention to prevent, delay or cure dementia, it is no wonder that most people avoid diagnosis. Most individuals and families ignore or mask the symptoms of dementia for as long as they can, denying that there is a problem until a crisis occurs. Our healthcare, social support and legal system are all adept at responding to crises. 

 

About 80% of our clients come to us in crisis, finding themselves with few options and no idea what to do. We have staffed our office appropriately to get families in to meet with us for an initial meeting shortly after their first phone call. We are able to create and execute legal and financial plans very quickly, and our care coordinators keep themselves available for all clients that need immediate assistance. But just because we (as well as the healthcare and social support systems) can and do provide great crisis intervention, there is a better way to be secure.

 

Acting Before the Crisis

It is becoming more and more apparent that individuals and families benefit from proactively addressing dementia issues. Getting a timely diagnosis allows for the following:

 

•   Connection with specialists that can guide appropriate use of available treatment options;
•   Creation of useful support systems that can provide respite care, educational support, and emotional support;
•   Coordination of care providers to provide effective management of coexisting conditions;
•   Meaningful participation in enriching activities and experience in safe and stress-free ways;
•   Intentional preparation of advance care plans to ensure autonomy and patient-driven care; and

•   Access to all available social and financial resources to help pay for care.