Anthony Cirillo, FACHE, ABC

Being diagnosed with dementia doesn’t mean your life is over, nor does it mean family and friends should treat you differently than they did prior to your diagnosis. That’s the theme of a unique Toolkit including two booklets released todayday in Tallahassee, Florida, by the Dementia Action Alliance (DAA).

With one booklet intended for the person living with dementia and the other for family and friends, the two booklets work in tandem to move beyond the fear and realize life can still be full of fulfillment, happiness and fun. The key is knowing dementia can affect one’s life but does not have to control it.

Dementia is an umbrella term that includes many different forms such as Alzheimer’s, Lewy Body, frontotemporal, vascular and mixed dementia. There is an abundance of information available publicly about cognitive and functional changes that can occur with dementia, but there is very little information about LIVING life with dementia.

“We know when diagnosed many people retreat from their existing lifestyle to one far more reclusive and debilitating,” said Karen Love, Executive Director of the DAA. “It doesn’t have to be that way. People with dementia and their families were interviewed from around the country for the Toolkit. An overarching sentiment expressed by all was that a dementia diagnosis is not a death sentence, and people can and do continue living productive and fulfilling lives when supported by knowledge and understanding of the condition.”

The Toolkit provides the supportive information and resources needed, including two easy-to-read booklets, Living with Dementia: An Unexpected Journey, for people living with early to moderate dementia symptoms and Living with Dementia: The Indispensable Handbook for Family and Friends for those who care about them, a deck of Caring Conversation Cards that make it easy to have conversations about dementia, and a moving DVD, “Person-Centered Matters,” produced by a former National Geographic filmmaker.

Brian LeBlanc, a member of the DAA’s Advisory Council who was diagnosed with early onset Alzheimer’s at the age of 54, is an outspoken advocate for those with dementia. “Learning you have dementia is like receiving an unseen hook to the chin. You fall to the mat and hear the referee start the count… 1… 2… 3.” Brian got up before the 10-count and wakes up every day with the pledge to make a difference by speaking out for so many that are being counted out. “I can still choose how active I want to be. I’m still here and want to enjoy life as much as possible.”

“Here in Florida, by 2020 we project one in five over the age of 65 will have some form of dementia,” said Florida State Senator Bill Montford. “That’s a very big number and we want to do what we can to improve the lives of those with dementia in addition to their families and friends.”

The Toolkit is being launched in Tallahassee because Alexander “Sandy” Halperin, a nationally honored Tallahassee advocate and Westminster Oaks resident, was the inspiration for the Toolkit. Westminster Oaks and the Area Agency on Aging for North Florida were valuable partners in the Toolkit development.