Emily and I are spending a week of respite in Cleveland between our travels around the country sharing the lessons we’ve learned from living with early onset dementia. Before heading to Boston, I want to share some upcoming events you may want to attend, as well as an excerpt from my op-ed published in The Plain Dealer on Sept. 2 - On living with dementia - a call for hope and urgency:
Like millions around the globe, I now live with a neurological condition that is not fully understood, and for which there is limited treatment but no cure.
Dementia is in my DNA. My mother, maternal grandfather and two aunts all died with it. I watched my mother and others hide their dementia, ashamed and embarrassed, as if it were a weakness, a punishment, or even a sin. I liken dementia to cancer in the 1960s or AIDS in the 1980s – spoken of in hushed voices with an undercurrent of blaming the victim. If only she had eaten less red meat and more green vegetables; if only he had done a crossword puzzle every morning; if only she had practiced yoga or meditation for the past 10 years; and so on. No wonder people with dementia want to hide it.
I refuse to live with dementia on those terms. For me, denial isn’t useful; honesty is important; early diagnosis can result in a higher quality of life; and transparency makes life easier for everybody involved.
Early diagnosis allowed me to exit work gracefully, put our legal and financial affairs in order, and make plans for the future. It also gives me the opportunity to do what I love and spend time with those whom I love. Honesty affords me the time, space, incentive and willpower to be intentional about self-care, exploring ways to manage and perhaps even slow the progress of my disease. As a pastor and theologian, transparency helps me make sense of dementia: to consider its spirituality, to give it meaning and purpose, and to share my learnings with others.
Dementia doesn’t care about race, creed, income or education; it truly doesn’t discriminate, but access to quality care does. Americans are projected to pay $1 trillion for Alzheimer’s care by 2050. Frankly, I worry that as baby boomers age, if we don’t act, Alzheimer’s and other age-related dementias could bankrupt Medicare and Medicaid, and we will start warehousing those who can’t take care of themselves.
Some 50 million people around the globe have dementia, and it’s expected to grow to more than 130 million by 2050, according to the World Health Organization. Dementia is the 7th leading cause of death in the world, and it’s also the leading cause of disability and dependence among the elderly.
Take action by encouraging your Senators and Representatives to support the BOLD Infrastructure for Alzheimer’s Act. This bipartisan legislation would create systems to advance effective interventions, encourage early dementia detection and diagnosis, prevent avoidable hospitalizations, reduce health disparities, support the needs of caregivers, and offer comprehensive care planning.
You can also act by supporting the Cleveland Walk to End Alzheimer’s on Saturday, Oct. 13. I will be the honorary chairperson for this event and would love to have you walk with us or start a team of your own to help us raise awareness and funding for the public health crisis of dementia. To visit our “Team Tracey” walk page, click here. The services and support of the Alzheimer’s Association are available to anyone affected by any form of dementia.
Another upcoming event you can attend is the City Club of Cleveland “Dementia from the Inside Out” Luncheon Forum on Friday, Nov. 30. I am pleased and honored to be asked to speak on this historic stage, and I hope to see all of my Cleveland friends in the crowd.